tag:blogger.com,1999:blog-36375636009683167692024-02-21T04:43:17.580+00:00A Drake's ProgressDrakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.comBlogger518125tag:blogger.com,1999:blog-3637563600968316769.post-21862652153747599222022-03-18T23:20:00.007+00:002022-03-18T23:32:51.020+00:00Stunned<p></p><div class="separator" style="clear: both; text-align: left;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhs0km24gDg7YhTobU6kaVI9hx97iq71WEsIdkcuICv9fpY7X3Iqa1VGuiaXXwSimzF5qLOs2GJquSwyAFcb5-3YiLtlMcU-pJpAG2ewEVbTVdvVl25G6yushW08H4crFLLJ8f1m8BGWqlb_D5TAOmN1YvEY_lk-NwT4_SM2terYygdhmKh-OqNNU5Y=s3622" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="2293" data-original-width="3622" height="203" src="https://blogger.googleusercontent.com/img/a/AVvXsEhs0km24gDg7YhTobU6kaVI9hx97iq71WEsIdkcuICv9fpY7X3Iqa1VGuiaXXwSimzF5qLOs2GJquSwyAFcb5-3YiLtlMcU-pJpAG2ewEVbTVdvVl25G6yushW08H4crFLLJ8f1m8BGWqlb_D5TAOmN1YvEY_lk-NwT4_SM2terYygdhmKh-OqNNU5Y=s320" width="320" /></a></div>It's not often you're left stunned in the supermarket. </div><p>I mean, there was that one time I queued up at customer service behind a grown woman wearing a dinosaur onesie, who became irate when she thought the member of staff wasn't 'taking her complaint seriously', but apart from that, a grocery shop is usually stun free.</p><p>But today I was properly shocked. Gobsmacked. Then livid. And all in the space of 15 minutes at a till.</p><p>I joined a queue, chatting absent-mindedly to my daughter, not paying too much attention to the woman in front of me, or her trolley (which would unexpectedly turn out to be a TARDIS that seemed to be actually producing whole new ranges of products). A young girl squeezed past me to join a tribe of tweens and teens in the packing area, and I thought: "Ah, that's good, that woman's got an sh*t-load of shopping but a sh*t-load of helpers, so this might not take too long." (Yes, my inner monologue is casually sweary, don't f***ing judge me).</p><p>It took ages. The woman started to ask the cashier how much the shopping had come to, and began to separate out some items. I idly wondered if she was going to put them aside because she didn't have enough money, and then realised with a start that this was probably the most likely explanation for what was happening. For a minute, I thought about stepping forward and offering to pay for the handful of items, you know, out of the goodness of my heart, and maybe to make myself feel good, smug lefty virtual signaller that I am.</p><p>Then I got a bit distracted by my daughter, who was shyly waving. "Who are you waving at - oh, is one of the girls waving at you?" I asked, assuming one of the tribe of kids was being friendly. My girl smiled, "Yes." "That's nice," I said, rummaging in my pocket to check that my purse was handy.</p><p>By the time I'd clicked back into paying attention, the family were paying up and bustling away, with the woman apologising over her shoulder for taking so long, and me replying: "No problem."</p><p>"I'm really sorry about that," the cashier said, looking quite serious. </p><p>"Ah, we all pick the longest queue by mistake sometimes," I replied.</p><p>"No, not just that - I was trying to get them through as quickly as possible because they were being really horrible about your daughter, saying nasty stuff," she said.</p><p>It felt like a punch. "What?" I thought of how my girl had waved. How she'd smiled shyly. What had these f***ers been saying? How DARE they? WHY hadn't the mum stopped them? How was this remotely acceptable or understandable? But what was it they said? What nastiness had they spewed out? I was desperate to know, and yet, desperate not to. Thank God my daughter couldn't read the situation correctly and hadn't twigged that what had happened was not friendliness but prejudice. Thank God I hadn't twigged.</p><p>A hammering heartbeat or two. "I wouldn't have said 'no problem' if I'd have known," I said, slowly.</p><p>The cashier gave me a sympathetic look.</p><p>A thought or three. Then my conclusion: "I'm glad I didn't hear, or you might have had a bit of an incident on your hands." </p><p>I thanked the staff member for her kindness. Somehow I'd cushioned my shock. Somehow I hadn't sprinted out of the store after them. (I say somehow, but with my dodgy knee, if I'd have set off, I'd have had to stop for a physio session before I got to the self-service tills). We left.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgicRcpRdVw1RELr_1g7gz8vkcDwfXbv0CJlt_4GVaRVQq66wOuwp7H9Im-CHo76Hc05ata55b3ztiKjxfiNRbEdpsVFGbkM-wguZeCLczlL9LHxMRo5qeJzL-WKM-ux92-r4SVeF-h-sEpPQefr_tgONNFwJiHVKhLS4DdRcxbXYYRTuH14cHPkz-q=s3411" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="2433" data-original-width="3411" height="285" src="https://blogger.googleusercontent.com/img/a/AVvXsEgicRcpRdVw1RELr_1g7gz8vkcDwfXbv0CJlt_4GVaRVQq66wOuwp7H9Im-CHo76Hc05ata55b3ztiKjxfiNRbEdpsVFGbkM-wguZeCLczlL9LHxMRo5qeJzL-WKM-ux92-r4SVeF-h-sEpPQefr_tgONNFwJiHVKhLS4DdRcxbXYYRTuH14cHPkz-q=w400-h285" width="400" /></a></div>Tonight I took my girl to the joint birthday party of a couple of friends we'd not seen for ages, and my cold, cold anger melted.<p></p><p>This. This bunch. These different, beautiful people. Surrounded by those who love them. </p><p>Holding on to anger does no good. It'll eat you up. I'll just stick to the beautiful.</p><br /><br /><p><br /></p><p><br /></p><p></p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="240" src="https://www.youtube.com/embed/hZw23sWlyG0" width="426" youtube-src-id="hZw23sWlyG0"></iframe></div><br /><p><i>Video is The Clash - Lost In The Supermarket</i></p><p><br /></p><p><br /></p>Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com1tag:blogger.com,1999:blog-3637563600968316769.post-88869590002781430322021-05-16T14:03:00.009+01:002021-05-16T14:12:20.292+01:00Escalate<span style="font-family: verdana;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEsZx4vQtLRcULAwsSLG8RacNbZrO6Ml3MhKHFiVWa6b5A1C0VYcMIlEt0POCL8ryBQklWk3saLHYABVZdUe2hOB3GV0QY0ICikAXSOqKQqV9rY5Whk7Qcq9sBfLwGQunzV72X6Rp8BjQ/s2048/IMG_7483.jpeg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="2048" data-original-width="1511" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEsZx4vQtLRcULAwsSLG8RacNbZrO6Ml3MhKHFiVWa6b5A1C0VYcMIlEt0POCL8ryBQklWk3saLHYABVZdUe2hOB3GV0QY0ICikAXSOqKQqV9rY5Whk7Qcq9sBfLwGQunzV72X6Rp8BjQ/s320/IMG_7483.jpeg" /></a></div><br />Prader-Willi Syndrome is a train ride. An old-fashioned, steam-billowing, noisy,
tooting train ride. Staying on the tracks is tough, cornering can sometimes be
tricky, and when you hit hills you have to shovel coal like crazy to get the top,
but the trip, the exhilarating trip, is worth it. </span><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">Except when you crash. </span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">My
daughter’s train has been teetering for some time and this week, it’s gone off
the rails. Fittingly, it just so happens to be both Mental Health Awareness Week
AND Prader-Willi Syndrome Awareness month, so I’ve got to hand it to her for
being totally on-brand. I’ve had phone calls and meetings with the college about
my girl’s unusual and uncooperative behaviour. She’s had out of character
outbursts, episodes of defiance, tears, and wild-eyed conversations about ideas and
mis-conceptions that have been swirling around in her head. </span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">It’s been a
throwback to a terrible time, eight years ago, when - out of the blue - my
daughter flipped the flipping flip out, smashed stuff, became hallucinatory, and
scared the living bejesus out of us, as we thought she might have a brain tumour
or some other terrible condition causing her to be almost unrecognisable. </span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">Then,
after tests, appointments, and spates of more unusual behaviour, she was
diagnosed as having a mood disorder on the spectrum of bi-polar. She was
prescribed mood stabilisers, and they worked. They’ve worked ever since. They’ve
put a safety lid on the highs, and a cushion under the lows, and we got our
daughter back. </span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">Now, however, the lid’s blown off. Whether it’s the cumulative
effect of lockdown, with her anxieties building and building and building over
the past 14 months, or whether it’s the fact she’s finishing college in just a
few short weeks, and the huge life changes that will entail, or whether it’s a
chemical thing I don’t know. I just know that it’s hard not feeling able to
leave her in her room on her own. I just know it’s tough having to hold her
hands for an hour to stop her scratching herself until she bleeds and to prevent
her throwing things across the room (the score is 1-1 in the dodging objects
Olympics - I ducked under the TV remote, but her headphones got me right on the
bonce). I just know it’s impossible trying to reason her when she says people
have said things to her that I know they haven’t. I just know it’s upsetting to
hear her say she thinks ‘something is inside the floorboards trying to get in’.
I just know it’s heartbreaking when she tells me: “My head feels funny and tells
me to say things. It keeps making funny noises and it’s going round in circles”. </span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">Pyschosis is the word that is circling in my head. I know full well that people
with Prader-Willi Syndrome are more susceptible to psychosis. This could be it.
But it also could be the freaky deaky effects of a lack of sleep, as I
discovered back in 2013. Let’s face it, we’re all prone to breaks from reality
and hearing voices if we’ve been awake night after night - and she has admitted
she’s not been sleeping well. So, yes, essentially, I’m telling myself anything
I can think of to keep calm, as I stand by the tracks, covered in soot, with the
train carriages strewn around me. And yes, I’ve gone back to the train analogy.
Give me a break, I’m knackered. </span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">On Monday, when things were at a less serious
DEFCON level, I spoke to my daughter’s very kind and understanding consultant
psychiatrist (who she’d been discharged from, because she’d been on an even keel
for so long). He told me to log everything in a behaviour diary, so we can
identify try patterns and triggers, and to contact him if things escalated in
the meantime. Well, they’ve escalated. Me and my escalating Excel sheet (already reaching
biblical proportions of word count) are getting back in touch. </span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">I hate to post
this picture of my girl from yesterday. It seems too raw, too private. But at
the same time I can’t sugar coat things. Sometimes people need to see the worst
to appreciate the best. She’s smiling, watching The Yorkshire Vet, as I type
this. I think she slept better. </span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">She doesn’t look the photo today. She looks like
herself. </span></div><div><span style="font-family: verdana;"><br /></span></div><div><span style="font-family: verdana;">We’ll get her back to herself.
<br /><br /><br /></span><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="320" src="https://www.youtube.com/embed/YPn8pt6FWVs" width="480" youtube-src-id="YPn8pt6FWVs"></iframe></div><br /><i>Song is Get Back by The Beatles</i></div><div><i><br /></i></div><div style="text-align: center;"><div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"><div style="text-align: left;"><span style="font-family: verdana;"><span class="s1" style="font-kerning: none;"><i>The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. They are in desperate need of funds - and they are a lifeline. If you can spare just a couple of quid, it would be hugely appreciated. The link to my fundraising page is here: </i></span><i><a href="https://www.justgiving.com/fundraising/carolyn-drake5">https://www.justgiving.com/fundraising/carolyn-drake5</a></i></span></div></div></div><div><div class="separator" style="clear: both; text-align: center;"><br /></div></div>Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com3tag:blogger.com,1999:blog-3637563600968316769.post-73979043909815490962020-10-04T18:01:00.001+01:002020-10-04T18:01:21.996+01:00'Erriot<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2FOXPO823RLH-lz5AToH3jMhyyJaGjxwRZEdZyTCOV-i4DCX7oW2eMCzPYX1Sa1KzhmJoVrzrSUfC-fcfOTCHax4Sh98a8hKcqBvK_vq5fXDaepMDf6ZTi0tSyalooO97IGDYRj5orN0/s2016/IMG_6314.jpg" style="clear: right; display: block; float: right; margin-bottom: 1em; margin-left: 1em; padding: 1em 0px; text-align: center;"><img alt="" border="0" data-original-height="2016" data-original-width="1512" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2FOXPO823RLH-lz5AToH3jMhyyJaGjxwRZEdZyTCOV-i4DCX7oW2eMCzPYX1Sa1KzhmJoVrzrSUfC-fcfOTCHax4Sh98a8hKcqBvK_vq5fXDaepMDf6ZTi0tSyalooO97IGDYRj5orN0/w300-h400/IMG_6314.jpg" width="300" /></a></div>My girl is 22 today. As you can see from the photo, hair-brushing was not first on the agenda this morning, but opening presents was. Her love of unwrapping gifts has not diminished over the years, unlike her bookshelf space. Double-stacking is now a thing in her <strike>library</strike> bedroom, with rows of books hidden behind rows of books. A rotating system might need to be instigated.<div><br /></div><div>We’re off out shortly for a curry, although it’s just a small family gathering because of Covid-19 number restrictions. We have had time to prepare her for this, and as long as she gets her tikka, and a spoonful of her Dad’s spicy dhansak sauce, she can cope with this, as food beats friends in the world of Prader-Willi Syndrome.</div><div><br /></div><div>Before that, we’re making a start on one of the 89 episodes of the surprise present I got her: the complete DVD box set of the original All Creatures Great And Small. It wasn't actually on her...shall we say...quite <i>detailed</i> and extensive birthday list (see photo below). Going ‘off-list’ isn’t always advisable and neither is me accidentally getting her the <i>wrong</i> edition of the Usborne Elizabeth 1 book, but that’s a whole other story. However, she’s mad on the new remake of the 70s TV programme so I took a punt - and it paid off. She's shaking with excitement at seeing the original cows’ arses that James Herriot stuck his arm up. </div><div><br /></div><div>The theme tune is starting up and bloody hell, I’m <i>transported</i> back to being a little kid of seven or eight, watching this with my mum. I’d give anything to have her sitting on the sofa between us, cuddling her granddaughter and laughing at Mrs Pumphrey’s Tricki Woo. </div><div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikLcSiOHRx8npsGQGnRakgstL2Np-6plCm6hfUwPSWG-klv81UKHfOo-Coe5XkpnQuVQpr7SSgGX5gOVT0xUwc_FXBhiHGMfDx3Qe629JZO7UQK_plHvabYF5m0labbMKydGVc5xPaJYg/s2016/IMG_6318.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2016" data-original-width="1512" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikLcSiOHRx8npsGQGnRakgstL2Np-6plCm6hfUwPSWG-klv81UKHfOo-Coe5XkpnQuVQpr7SSgGX5gOVT0xUwc_FXBhiHGMfDx3Qe629JZO7UQK_plHvabYF5m0labbMKydGVc5xPaJYg/s320/IMG_6318.jpg" /></a></div></div><div><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="320" src="https://www.youtube.com/embed/m6aquEsK_JQ" width="480" youtube-src-id="m6aquEsK_JQ"></iframe></div><div><i>Video is the opening credits from All Creatures Great And Small. </i></div>Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com0tag:blogger.com,1999:blog-3637563600968316769.post-68863491632599541962020-06-10T18:54:00.001+01:002020-06-10T18:55:23.109+01:00Vulgar<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">My daughter spent a long time tackling a college task today; she had to write independently about how she has been affected by life in lockdown.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLmyds-fpMy4PHe4n_Jf5iN3n2sTmi5m4BKFSpdm_C6LWTgUKvSdfTZ4BVC5zp2fIeGA1VxoSR4H4lyavY2tlLE48xEgpwIemhR4eJQSly8foU2nNWGTfmnctmbOy5J2915W23KUUWO4Q/s1600/Lockdown+Experiences+Sheet.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Once she finished, I helped her correct just a handful of the more obvious spelling mistakes, including the most...um...shall we say...‘glaring’ example in the first line of the text.</span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIZkSPAwnv1Z3narPLJQbkYXYE-fiXvgBYK_NnFL8KBKA0doiwflSrBWIMcMOKD0D_WDOfXWxvhHqVRKuDHT_DcYssSxS1HaotQ32tw8THnKv4ztcCSuCS5APJSZHKfDzDNvg8GWVXIhE/s1600/Lockdown+Experiences+word+highlight.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="72" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIZkSPAwnv1Z3narPLJQbkYXYE-fiXvgBYK_NnFL8KBKA0doiwflSrBWIMcMOKD0D_WDOfXWxvhHqVRKuDHT_DcYssSxS1HaotQ32tw8THnKv4ztcCSuCS5APJSZHKfDzDNvg8GWVXIhE/s400/Lockdown+Experiences+word+highlight.jpg" width="400" /></a></div>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I think we can all agree that, until the crossing out, the most surprising effect of the pandemic seems to have been her finding hitherto undiscovered skills in turning vulgar nouns into adverbs. </span></span><span style="font-family: "trebuchet ms" , sans-serif;">Either that or she has accidentally stumbled across a startlingly self-aware entry in Dominic Cumming's lockdown diary.</span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Here's the whole thing. She's submitted it now, so if you spot any more accidental ****s or ****s, it's too late to amend it.</span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLmyds-fpMy4PHe4n_Jf5iN3n2sTmi5m4BKFSpdm_C6LWTgUKvSdfTZ4BVC5zp2fIeGA1VxoSR4H4lyavY2tlLE48xEgpwIemhR4eJQSly8foU2nNWGTfmnctmbOy5J2915W23KUUWO4Q/s1600/Lockdown+Experiences+Sheet.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLmyds-fpMy4PHe4n_Jf5iN3n2sTmi5m4BKFSpdm_C6LWTgUKvSdfTZ4BVC5zp2fIeGA1VxoSR4H4lyavY2tlLE48xEgpwIemhR4eJQSly8foU2nNWGTfmnctmbOy5J2915W23KUUWO4Q/s640/Lockdown+Experiences+Sheet.jpeg" width="392" /></a></div>
</div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div style="text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/zSEafij6XIs/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/zSEafij6XIs?feature=player_embedded" width="490"></iframe></div>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i><br /></i></span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i>Song is Roisin Murphy - Dear Diary</i></span></span></div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com0tag:blogger.com,1999:blog-3637563600968316769.post-83621182249173792692020-05-21T20:16:00.001+01:002020-05-21T20:21:47.099+01:00Day Twenty Six <div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/qfk_DFLhSnI" width="480"></iframe><br />
<div style="text-align: center;">
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br class="Apple-interchange-newline" /></span></span>
<br />
<div style="text-align: left;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">So it’s done.<span class="Apple-converted-space"> </span></span></span></div>
</div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<div style="text-align: left;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
</div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<div style="text-align: left;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">After 25 blogs in 26 days I rashly vowed to let my son loose on my hair with electric clippers in what was effectively a mum sanctioned revenge attack.</span></span></div>
</div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<div style="text-align: left;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
</div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<div style="text-align: left;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">The proviso was that my fundraising total for the blogathon for the Prader-Willi Syndrome Association UK needed to tip over the £1000 mark and hit £1250 by this afternoon.<span class="Apple-converted-space"> </span></span></span></div>
</div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<div style="text-align: left;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
</div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<div style="text-align: left;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I mentioned this yesterday teatime. The Just Giving notifications began to ping like a bleeding Nintendo game. We passed the target, you utter bastards. Thank you, thank you, thank you. I can resent you and thank you at the same time, can’t I?<span class="Apple-converted-space"> </span></span></span></div>
</div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<div style="text-align: left;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
</div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<div style="text-align: left;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Here’s the video. I do recommend watching all the way through, as my boy is on top smart-arsery form, and my daughter is providing a classic PWS demonstration of just how easily slight panic can set in in a new and unfamiliar situation.</span></span></div>
</div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<div style="text-align: left;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
</div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<div style="text-align: left;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I keep rubbing my head. My boy thinks I do NOT look like Sinead O’Connor, but DO look like Matt Lucas.<span class="Apple-converted-space"> </span></span></span></div>
</div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<div style="text-align: left;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
</div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<div style="text-align: left;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">However, my husband and I just came up with a better lookeelikee. We’re going to do some painting next week and we have just realised we can now re-enact the decorating scene from The Royle Family. And yes, I’m Twiggy.</span></span><br />
<br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-family: times; font-size: large; text-align: center;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"></span></span><br />
<br /></div>
</div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<br /></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo059dCgYjH1PzAMkDm5SezYlZ2R2viMBqipt7Q5mot2dOPGZ1XBOgWBr10dbdK_Et_sGkGnnhxHSkKHuAPUXdmUrgaLIW_7jCIRwe9bJ5suorbJMrwnkzwi3i9bPlLzngXVmcPf47WSo/s1600/Royle_Family_boogie.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="380" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo059dCgYjH1PzAMkDm5SezYlZ2R2viMBqipt7Q5mot2dOPGZ1XBOgWBr10dbdK_Et_sGkGnnhxHSkKHuAPUXdmUrgaLIW_7jCIRwe9bJ5suorbJMrwnkzwi3i9bPlLzngXVmcPf47WSo/s320/Royle_Family_boogie.gif" width="490" /></a></div>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i><br /></i></span></span>
<br />
<div style="text-align: left;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i><i>The Royle Family - Jim & Twiggy</i></i></span></span></div>
<br />
<span class="s1" style="font-kerning: none;"></span>
<span class="s1" style="font-kerning: none;">
</span><span class="s1" style="font-kerning: none;"></span>
<br />
<div style="text-align: left;">
<span class="s1" style="font-kerning: none;"><span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i style="font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I wrote 26 blogs in 26 days, then let my boy loose on my hair with electric clippers. </span></i></span></span><i style="font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living.</span></i></span></div>
<i style="font-family: times;"></i><br />
<div style="text-align: left;">
<i style="font-family: times;"><i style="font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">Please give something if you haven't already.</span></i><i style="font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">Thank you to each and every one of you who have donated. </span></i></i></div>
<i style="font-family: times;">
</i></div>
</div>
<div style="text-align: center;">
<br /></div>
</div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com0tag:blogger.com,1999:blog-3637563600968316769.post-81745414615462083872020-05-20T16:50:00.001+01:002020-05-20T16:50:25.538+01:00Day Twenty Five<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfFfP-Aev4a_iZvw4nV9hN-rw14iAAQh5RwDnRqLLdqACOzvWRt-0bx0tiL20JlYEV7Mbdes5rsAEN2qJH47BIyzln92HVrGRozVSX9W1uG4XA3uPz74Fhgngnsp54m1mMgIOF2JI0Flo/s1600/Baldy.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="132" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfFfP-Aev4a_iZvw4nV9hN-rw14iAAQh5RwDnRqLLdqACOzvWRt-0bx0tiL20JlYEV7Mbdes5rsAEN2qJH47BIyzln92HVrGRozVSX9W1uG4XA3uPz74Fhgngnsp54m1mMgIOF2JI0Flo/s320/Baldy.jpeg" width="320" /></a><span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I like a big finish.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Tomorrow will be the last of my 26 blogs in 26 days to raise money for the Prader-Willi Syndrome Association, the charity closest to my heart and soul.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Other people may have chosen more physical feats for their 2.6 Challenges, but I firmly believe that prattling on has its place in the world, and I have planted my prattling on flag here with pride.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">As I write this, the total on my fundraising page stands just shy of a grand. This is amazing.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">But I’ve decided to make a rash promise to try and squeeze a few more quid out of people.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">This could be because of my altruistic nature. It could possibly have more to do with my befuddled lockdown brain finally running out of things to say as I lose the plot entirely.<span class="Apple-converted-space"> </span>You can examine the evidence if you like - I just had a re-read of all the posts so far and I’m frankly surprised today’s doesn’t just say ‘All work and no play makes Jack a dull boy’.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">So I’m making a pledge. If I can get another £250 for the PWSA UK by tomorrow afternoon, I will shave my head.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Or rather, I will let my 11-year-old son loose on me with the clippers. Which will be an extreme act of revenge for him, as I gave him a very bad buzzcut near the start of the lockdown, which he still hasn’t forgiven me for eight weeks later. I’m started to wish ‘gloating glee’ hadn’t been my go-to demeanour. The words ‘suck it up, baldy boy’ are going to return to haunt me, aren’t they?</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I know this is not an original idea. People have shaved their heads for charity since as long as I can remember.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">But what you have to take into account is my big old potato face, which has filled out considerably due to reckless levels of beer as I have inventively interpreted government advice to Stay Home as being Stay Home and Get Pished. (This is making the Stay Alert bit much more difficult, I can tell you).</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Mine is not an elfin visage, with delicate features. As much as I would love<span class="Apple-converted-space"> </span>to end up looking like Sinead O’Connor, I have more than a sneaking suspicion I will bear a far greater resemblance to Varys from Game of Thrones. Or that bald woman out of Total Recall.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">So look, 100 of you, divvy up. £2.50 each. Let’s say £2.60 to tie in with the 2.6 theme.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">And you can all have a great big laugh at my great fat head.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Oh God. I’m going to regret this. Share away, you bastards, share away.</span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-family: times; font-size: large; text-align: center;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a></span></span><br />
<br /></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/istJXUJJP0g/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/istJXUJJP0g?feature=player_embedded" width="490"></iframe></div>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i><br /></i></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i>Song is James Brown - Payback</i></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/4lQ_MjU4QHw/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/4lQ_MjU4QHw?feature=player_embedded" width="490"></iframe></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<i><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></i>
<i><span style="font-family: "trebuchet ms" , sans-serif;">Film clip = 'All work and no play...' - The Shining</span></i><br />
<br />
<div class="p1" style="-webkit-text-stroke-width: 0px; color: black; font-family: Times; font-size: medium; font-stretch: normal; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; line-height: normal; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;">
<div style="margin: 0px;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i style="font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. I love each and every one of you who donated. But I will have a little bit of hate for those of you who contribute in this little last push if you manage to force me to look like an idiot for the next few months. You do realise that if you make me do this, a cure will be found instantly for Covid-19 and millions of people will be getting their hair done by professionals, who would NEVER let me do this.</span></i></span></span></div>
</div>
<i><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></i>
<i><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></i></div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com0tag:blogger.com,1999:blog-3637563600968316769.post-65879799426682512502020-05-19T17:53:00.004+01:002020-05-19T18:23:49.093+01:00Day Twenty Four<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOQmY0C-NM60cN81LFFFxXQpJ2ESuBijstvohG97PQiLe9VCzwP6NpNzNiCWp31hkZW5Dd_JfUxdpgJM12Fe4uAUYUyVNDWTEJmj8Wj_DoEmvq01VOr73dS_5j17wMBZR7rNKoSFK_ZiI/s1600/Josie+incubator.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOQmY0C-NM60cN81LFFFxXQpJ2ESuBijstvohG97PQiLe9VCzwP6NpNzNiCWp31hkZW5Dd_JfUxdpgJM12Fe4uAUYUyVNDWTEJmj8Wj_DoEmvq01VOr73dS_5j17wMBZR7rNKoSFK_ZiI/s400/Josie+incubator.jpg" width="400" /></a><br />
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I just fell through a portal into the past.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">The sight of our newborn baby girl in an incubator in the hospital's Special Care Baby Unit, captured in this photo from 21 years ago, was skin-tinglingly visceral.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwEKrkW7t-AcCb1sfEm7Qb_TgKyRRMv5nZxQJGPTZI1kqOrmJnLnVbyGrt7W1XAQznJDOH8crRtb29XkPYvGlcDGmvbjVAfdDKb-UTHYnZeJNN-qgdZtnRs70O3aQMEbtJkPIHMx-gf4s/s1600/Josie+on+nappy+mat.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwEKrkW7t-AcCb1sfEm7Qb_TgKyRRMv5nZxQJGPTZI1kqOrmJnLnVbyGrt7W1XAQznJDOH8crRtb29XkPYvGlcDGmvbjVAfdDKb-UTHYnZeJNN-qgdZtnRs70O3aQMEbtJkPIHMx-gf4s/s400/Josie+on+nappy+mat.jpeg" width="276" /></a><span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I can feel the oppressive heat of the room, hear the competing beeps from the various machines, remember how overwhelmed, how tired, how shell-shocked I was, and how tiny and helpless she looked.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Those early days were hard. The diagnosis of Prader-Willi Syndrome was still a few weeks away. No-one could explain why our girl was so weak and floppy, and was unable to feed without a tube.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Those little porthole doors gave us access, to hold her tiny fingers, and sit and stare and worry and hope.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">The worry and hope has never gone away. We anticipated then that life was going to be different, and it is, and always will be.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">She’s in the next room, talking to me as I write this. She loves to suddenly start speaking to me with no warning from a completely different area of the house. In the spirit of this post, I should tell you that my heart was filled with joy at being able to hold a conversation with the woman this little baby in the picture has grown up to be. I should tell you that, but my actual reply was: “Will you give it a rest? I am NOT having a conversation with you when you’re in a different ROOM!” Don’t judge me, it’s bloody annoying.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Yeah, life is different, just as we expected. But it’s unexpectedly better. Better than we ever thought it could be back then, through that portal, holding her hand, just managing to hold on.</span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-family: times; font-size: large; text-align: center;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/Cche-h83qNQ/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/Cche-h83qNQ?feature=player_embedded" width="490"></iframe></div>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i><br /></i></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i>Song is Nick Drake - Time Has Told Me</i></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i><br /></i></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i style="font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. In those difficult early days, they were there for us. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. Two more days, two more days, we can do it. </span></i></span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span></div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com0tag:blogger.com,1999:blog-3637563600968316769.post-38026018457305035882020-05-18T18:59:00.002+01:002020-05-18T19:03:15.675+01:00Day Twenty Three<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY0cwP6vuSqubzuuK7BrJnJczzez50rXmhm-AGNrwypi1YI_JeH031M3iwvK8bs2uOOWAAkZKM1wkzfcez4ul4y51D6BwyCl0RlWVqrUMh2dP2Glxh6aUdXe-IlV6IMNdwPgtwmCEKfgI/s1600/Hitler+%2526+Arnie.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="163" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY0cwP6vuSqubzuuK7BrJnJczzez50rXmhm-AGNrwypi1YI_JeH031M3iwvK8bs2uOOWAAkZKM1wkzfcez4ul4y51D6BwyCl0RlWVqrUMh2dP2Glxh6aUdXe-IlV6IMNdwPgtwmCEKfgI/s400/Hitler+%2526+Arnie.jpeg" width="400" /></a><span style="font-family: "trebuchet ms" , sans-serif;">I am used to random queries from my daughter. </span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>
<span style="font-family: "trebuchet ms" , sans-serif;">My favourite ever was: “Is Hitler in the school toilets?” The answer, which should come as no surprise to you, was no. Let’s face it, however desperate a time-travelling Hitler was for a fuhrerdumpf he’d never have got past reception, would he?</span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Today’s question, which has been unravelling nicely over lockdown, like my sanity, wasn’t quite to that standard.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">“If I sleep on my back, I won’t get taller, will I?” my girl asked, several times. Phase 1 was launched.<br />“No. You won’t,” I replied.</span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">“Mum, if I sleep on my back, I won’t get taller, will I, and that’s good if I don’t get taller, isn’t it?” Phase 2 had been initiated.</span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">“Yes.”</span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">“Mum, if I sleep on my back, I won’t get taller, will I, and that’s good if I don’t get taller, isn’t it, because I can still ride my trike and my feet can reach the pedals.” Boom! Phase 3 was deployed and detonated.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I don’t know where to start with the flaws in her logic. Quite how choosing to sleep on her back could affect her height is beyond me. And wouldn’t it be getting shorter, not taller, that would make reaching the pedals a problem? There's also the small matter of her being 21, so her growing years are over, let alone the fact she had spinal fusion surgery at the age of 10.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">But pointing this out would be a dangerous plan. Best not to get sucked in. A Prader-Willi person on a questioning jag reminds me for some reason of that quote from The Terminator, you know the one...</span></span></div>
<blockquote class="tr_bq" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<i><span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;">"That terminator is out there. It </span>cannot be bargained with. It cannot be reasoned with. It doesn't feel pity, or remorse, or fear. And it absolutely will not stop, ever, until you are dead.".</span></i></blockquote>
<span style="font-family: "trebuchet ms" , sans-serif;">Actually, on second thoughts, that's a bit extreme. A PWS person would stop when it was teatime. But you get the picture; they can go on a bit. </span><span style="font-family: "trebuchet ms" , sans-serif;">The best tactics in this situation, is to agree, firmly, and leave the room quicker than Adolf jettisoning his kampf.</span><br />
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">The only problem today was the Second Front. Running away from one child only put me in the line of fire from the other.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">My boy had decided early on that this Monday would be an ‘appalling, anarchic attitude and backchat during his home school lessons’ kind of Monday. </span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><span class="Apple-converted-space"><br /></span></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><span class="Apple-converted-space">Attempting to supervise him on a piece of work that should have taken just a few minutes saw me eventually resort</span></span></span><span style="font-family: "trebuchet ms" , sans-serif;"> to several embarrassing clichés, including: “It’s your own time you’re wasting.”</span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">But the smart little bastard can always burst my bubble. Right when my emotion level was bubbling around ‘abolutely livid’, I warned him: “Don’t laugh. If nobody else is laughing then it’s not funny,” I said.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">He didn’t miss a beat: “Tell Uncle Ian that.”<span class="Apple-converted-space"><br /><br /><a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-family: times; font-size: large; text-align: center;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a></span></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><span class="Apple-converted-space"><br /></span></span></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/rPqwUITSUT8/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/rPqwUITSUT8?feature=player_embedded" width="490"></iframe></div>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><span class="Apple-converted-space"><br /></span></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><span class="Apple-converted-space">Song is Johnny Nash - There Are More Questions Than Answers</span></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><span class="Apple-converted-space"><br /></span></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><span class="Apple-converted-space"><i style="font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. You've got three more days of this and then I'll stop, I mean that's worth something, isn't it?</span></i></span></span></span></div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com0tag:blogger.com,1999:blog-3637563600968316769.post-66837662329672394252020-05-17T18:46:00.001+01:002020-05-17T18:52:30.390+01:00Day Twenty Two<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivMHCBN37JUrCYsdSzT6S5a-YfIUblTrh-yaFoJKpBxdar2Bugp6aHE7C3GdudjpM_2khRXP3Gvz2uOSmFGl8qCTYCURefmVFHynQtecOxxMpxWxJ7g0oDYkuh9C5JwQdMVVxUPC72hRA/s1600/Shield+copy.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="318" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivMHCBN37JUrCYsdSzT6S5a-YfIUblTrh-yaFoJKpBxdar2Bugp6aHE7C3GdudjpM_2khRXP3Gvz2uOSmFGl8qCTYCURefmVFHynQtecOxxMpxWxJ7g0oDYkuh9C5JwQdMVVxUPC72hRA/s320/Shield+copy.jpg" width="320" /></a><span style="font-family: "trebuchet ms" , sans-serif;">I’ve been thinking about shields.</span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">This may be because my son and I are up to Captain America: Civil War in our marathon watching of the Marvel films in chronological order of narrative. The little nerd.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Or it could because the most vulnerable have been asked to obey a ‘shielding’ strategy and not leave the house for 12 weeks to protect themselves from the risk on contracting Covid-19.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">But I understand shielding.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Never mind this current madness, in normal times all I want to do is protect my daughter from the dangers and risks of everyday life. And for that I have a shield.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">My shield is invisible. It’s not made up of vibranium (Note to self: have Ann Summers released a Marvel Pneumatic Universe tie-in edition of the Rampant Rabbit called the Vibranium? If not, why not?).</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">No, my shield has been constructed out of every little piece of my Prader-Willi Syndrome experience painstakingly stockpiled over the last 21 years.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">It’s every fragment of knowledge, every mistake I’ve learned from, every tip and trick I’ve been told. Bonded together, these pieces give me the power to deflect most of the missiles life bombards us with.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I’m no superhero. I think I’ve proved this with the way this lycra skin-tight Avengers costume is disappearing up my bumcrack.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">No, all I’m saying is I’ve been armed. I’ve been given PPE.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">The Prader-Willi Syndrome Association has distributed Personal Protection Equipment to me and thousands like me over many years. Knowledge. Advice. Shared Experience. Love. That’s the shield they’ve given me.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I would have preferred Thor’s hammer but you can’t have everything. And</span></span><span style="font-family: "trebuchet ms" , sans-serif;"> yes, that is a euphemism.</span><span style="font-family: "trebuchet ms" , sans-serif;"> </span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-family: times; font-size: large; text-align: center;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a></span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/tUiP5eyx3NM/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/tUiP5eyx3NM?feature=player_embedded" width="490"></iframe></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i><br /></i></span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i>Song is The Breeders - Divine Hammer</i></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i><br /></i></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i style="font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. Finally, a quick message to Jacqueline Gold, CEO of Ann Summers. If you introduce The Vibranium to your range the PWSA UK needs to get 50% of all profits, luv, or I'll sue the arse off you.</span></i></span></span></div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com0tag:blogger.com,1999:blog-3637563600968316769.post-1556485793681228852020-05-16T16:54:00.000+01:002020-05-16T17:06:05.571+01:00Day Twenty One<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0C5kQ2hEC1RjNnZxtp8TNDH8p7uc_F8ZVZb_LUQGd5F0t0efj_M6OpkxtH5NPjEFZzLEG-QnTjpONuASy3f2pI4xhnVqTHTVPYKzOF3IJ50NVBei3eNG6Rz0W1XSc8hich3atoAS_29M/s1600/Jazz+in+trouble.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0C5kQ2hEC1RjNnZxtp8TNDH8p7uc_F8ZVZb_LUQGd5F0t0efj_M6OpkxtH5NPjEFZzLEG-QnTjpONuASy3f2pI4xhnVqTHTVPYKzOF3IJ50NVBei3eNG6Rz0W1XSc8hich3atoAS_29M/s320/Jazz+in+trouble.jpg" width="292" /></a><span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I have discussed my daughter’s fascistic tendencies before. I am convinced if we lived in different times that her love of rules would have seen her indocrinated into the Hitler Youth in a flash. There’s little doubt she would have sold me and her dad down the river, the little Nazi.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">We get told off. For doing things we shouldn’t. For not doing things we said we should. For not doing things we said we should when we said we would. You get the picture.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">We have a labrador. A patient, well-behaved, 11-year-old labrador. He’s only lived with us for nine months, but he’s part of the family.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">My girl is in charge of his food. Boy, oh boy, is she in charge of his food. He receives a cup of dried dog food in the morning, meticulously measured to the line, and the same again in the evening. Once every three days, he is allowed a small treat.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">If my daughter hears the cupboard being opened and the rustle of the snack packet (which she can do from several rooms away), her accusatory voice rings out: “Jazz is NOT allowed a treat today. He WILL NOT get overweight.”</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">People with Prader-Willi Syndrome have to have their food intake strictly controlled, to prevent them becoming morbidly obese. Their bodies don’t convert fat to muscle efficiently, so have to be on less calories than average, which is especially challenging as they never physically feel full up.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I think my PWS daughter, whose own mealtime and snack regime is so rigid, is enjoying being in control. She has no real agency over her food, so she’s channelling her inner frustration to take a controlling interest in the dog’s diet.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Today, Jazz, being a labrador, rebelled. At lunchtime, my son had a slice of bread cut up into soldiers sitting next to his soup bowl - a little too close to the edge of the table. The dog spotted his chance, and snaffled a finger of bread.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">He got told off, in no uncertain terms.<br /><br />“It’s just not good enough. You will be banned from the house for a day for this behaviour,” my girl informed him.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Harsh. So very harsh.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">(I let him back in. I’m not a monster).</span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-family: times; font-size: large; text-align: center;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/EjTxIlpT_UY/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/EjTxIlpT_UY?feature=player_embedded" width="490"></iframe></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i>Song is The Fall - Who Makes The Nazis?</i></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i><br /></i></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i style="font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. If you don't do it, my daughter might report you to the SS or something. A huge thank you to the anonymous donor who I'm half convinced might have made a mistake with the amount yesterday. Get in touch if this is the case! </span></i></span></span></div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com0tag:blogger.com,1999:blog-3637563600968316769.post-76928985987494223822020-05-15T19:37:00.000+01:002020-05-15T19:37:18.496+01:00Day Twenty<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNx7aSw8qSn3wINjuXAJ1l-OBx8UhX3HVPC8qGNK0iCMkwLIssyn3XaTY3rBg5_YRg3-6PM81gKfN9VEVikCwfES9-ps9eNudyBudElajzmYG1CRagkHDLiM6PfXUSyIvNBq5fjaOEEE0/s1600/IMG_5066.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNx7aSw8qSn3wINjuXAJ1l-OBx8UhX3HVPC8qGNK0iCMkwLIssyn3XaTY3rBg5_YRg3-6PM81gKfN9VEVikCwfES9-ps9eNudyBudElajzmYG1CRagkHDLiM6PfXUSyIvNBq5fjaOEEE0/s320/IMG_5066.jpg" width="320" /></a></div>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Once a biker, always a biker.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p3" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s2" style="font-kerning: none; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">I first wrote about </span><span class="s1" style="font-kerning: none;">The Sons & Daughters Of Anarchy (East Bedfordshire Division) on this blog a few years ago <i>(See the bottom photo).</i></span></span></div>
<div class="p4" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p3" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">There’s been a few tattoos and meths busts since then, and Knuckles and Pugface have had their share of beefs with the West Bedfordshire Division (splitters!)</span></span></div>
<div class="p4" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMLUHWz3psAQq00jtIW0HBaXgUgRzyqIv2xQZzlCmh6CNKBfr2i8s_4fHzJQPGzuem4bK_G4_EhVejEmNpAI6gV1jYYirM4poKQngZmx6ht5WMnX_emhn8Ikb8t-W76LdDV10J3PO1RGA/s1600/IMG_5056.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMLUHWz3psAQq00jtIW0HBaXgUgRzyqIv2xQZzlCmh6CNKBfr2i8s_4fHzJQPGzuem4bK_G4_EhVejEmNpAI6gV1jYYirM4poKQngZmx6ht5WMnX_emhn8Ikb8t-W76LdDV10J3PO1RGA/s320/IMG_5056.jpg" width="320" /></a><span style="font-family: "trebuchet ms" , sans-serif;">Now my girl has some new wheels, the gang have got a bloodthirsty new attack dog, Fang, and today they were ready to hit the mean streets of... our small market town.</span></div>
<div class="p4" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p3" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Their biker gang is so intimidating, people actively cross the street to avoid them. Well, they do at the moment, but that’s probably got something to do with Covid-inspired social distancing.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p4" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p3" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeAgf1bPeS0w49wCKNxVXBpnvYVNeHKbVtAIJ5URSeimzi4ERd7-63xBLzyeG-4LGsUPISXnQmrSEd5Bzr6gLQMiZJtMJ6vJtyE-8482kMS4qrKg6J736eFKH2kuC-KEU1owiZlS1wlrE/s1600/bikes.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="886" data-original-width="589" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeAgf1bPeS0w49wCKNxVXBpnvYVNeHKbVtAIJ5URSeimzi4ERd7-63xBLzyeG-4LGsUPISXnQmrSEd5Bzr6gLQMiZJtMJ6vJtyE-8482kMS4qrKg6J736eFKH2kuC-KEU1owiZlS1wlrE/s320/bikes.jpg" width="212" /></a><span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">But there’s no doubt they are dangerous. My boy’s levels of insouciance leave previously confident passers-by feeling strangely inadequate. And my daughter - who gets easily distracted by someone in her periphery and then unthinkingly steers that way as she turns her head to be nosy - has a good chance of mowing down anyone who steps within the 2m zone.</span></span></div>
<div class="p4" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p3" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Today there were no hit and runs, and no run-ins with the law. I suppose I should be disappointed, seeing as I am the the gang’s leader, Bad Ass Mother Drake (<i>number of tattoos</i> - one; <i>number of kills</i> - at least three goldfish; <i>time taken to squeeze into leather trousers</i> - 45 minutes including 5 minutes of actual passing out).</span></span></div>
<div class="p4" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p3" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I should protect my rep, and not get soft. But watching my girl on her trike, sorry, hog, makes me very happy. Due to her Prader-Willi Syndrome, her weak muscle tone and poor balance means cycling is a problem, but the three wheels gives her the solid base she needs. She’s a bit heavy on the braking, and you have to occasionally move like lightning to direct her towards the middle of a drop kerb, but once she’s on a safe flat path, she can pedal along in her fiercely determined way.</span></span></div>
<div class="p4" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p3" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">It makes me fiercely proud.</span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-family: times; font-size: large; text-align: center;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a></span></span></div>
<div class="p4" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span class="s1" style="font-kerning: none;"></span><br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/TAAcLNkJvxk/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/TAAcLNkJvxk?feature=player_embedded" width="490"></iframe></div>
<span style="font-family: "trebuchet ms" , sans-serif; font-size: small;"><i><br /></i></span><span style="font-size: small;"></span><span style="font-family: "trebuchet ms" , sans-serif; font-size: small;"><i style="font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">Song is The Supernaturals - Motorcycle Parts</span></i></span><br />
<span style="font-family: "trebuchet ms" , sans-serif; font-size: small;"><i style="font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></i></span>
<span style="font-family: "trebuchet ms" , sans-serif; font-size: small;"><i style="font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. And if you can't, Mama Drake will send the biker gang round to persuade you, just as soon as I do up these leather trousers.</span></i></span></div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com0tag:blogger.com,1999:blog-3637563600968316769.post-62102458720375753912020-05-14T17:48:00.002+01:002020-05-14T17:48:44.313+01:00Day Nineteen<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmtdDqkxF8D_HY_PlWCKfh87iWD_wR-qQWTxOvELY9fLG6ZuQQ0S4UBAnEk1-sUOmuL0Y43n_xXG-2r_RPupJm1M40zyPufh3parlvNmX7a6hIrBWRcDJvZ9zXw2_QB4Dx4VRALV0vbn8/s1600/pixellated.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmtdDqkxF8D_HY_PlWCKfh87iWD_wR-qQWTxOvELY9fLG6ZuQQ0S4UBAnEk1-sUOmuL0Y43n_xXG-2r_RPupJm1M40zyPufh3parlvNmX7a6hIrBWRcDJvZ9zXw2_QB4Dx4VRALV0vbn8/s320/pixellated.jpg" width="272" /></a><span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Being in a household with a Prader-Willi person means you do learn to filter stuff out.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I can wilfully, skilfully ignore a level of background blatherings that would cause a random visitor (remember them?) to remark: “How can you hear yourself <i>think</i>?</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">When my husband and I do our unspoken tag team thing - otherwise known as when I sidle out of the room just after my daughter corners him in a particularly repetitive conversation cycle - I still</span></span><span style="font-family: "trebuchet ms" , sans-serif;"> vaguely register the conversation, but unconsciously filter it out to a background hum.</span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">This happened yesterday, but my filter gradually failed as my daughter’s voice grew more panicky, and my husband’s started to sound as if his teeth were being well and truly gritted. I flipped my ear switch from ‘ignore’ to ‘earwig’, as I detected potential entertainment.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Her dad seemed to be explaining to her what ‘pixellating’ meant. He sounded like he was coming to the limit of the number of times he was prepared to answer the same question. I surmised this was what the last 15 minutes of ‘background hum’ had been about, but I couldn’t work out the context.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">“I’m not going to tell you again, because I’ve already explained it, A LOT,” he said firmly, his exasperation clearly audible. “If you want me to watch ‘The A Word’ with you, you need to stop asking me that and PLAY the programme!”</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Cue another anxious barrage of questions from her about ‘pixellating’. I started heading towards the door, motivated by a combination of nosiness, support, and the desire to take the piss. And just as I got there, the mystery of where the question had come from was solved.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">“But it says in the listings that Joe is pixellated on his teacher!” said Josie, the confusion clear in her voice, possibly because she was trying to understand why Joe’s face would need to be disguised.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">“All this time you didn’t think to tell me it’s in the listings?” came my husband’s accusatory voice, followed first by a pause as he located the remote and checked the programme synopsis, and then by a very large sigh.<span class="Apple-converted-space"> </span>“No,” he said, in the voice of a soldier, tired of war, “it doesn’t say that. It says Joe is fixated on his teacher. Fixated!”</span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">"Oh!" came her unabashed reply. "Well, I know what <i>that</i> is."<br /><br /><a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-family: times; font-size: large; text-align: center;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/AbAArShgnTg/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/AbAArShgnTg?feature=player_embedded" width="490"></iframe></div>
</div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span style="font-family: "trebuchet ms" , sans-serif;"><i>Song is </i></span><span style="background-color: #f9f9f9; color: var(--ytd-video-primary-info-renderer-title-color, var(--yt-spec-text-primary));"><span style="font-family: Trebuchet MS, sans-serif;"><i>Céu - Amor Pixelado </i></span></span><i style="font-family: "trebuchet ms", sans-serif;">- if you watch the video, you'll see she starts off well with the social distancing, but lets herself down by the end. Where's your 'common sense', woman?</i><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><i><br /></i></span>
<span style="font-family: "trebuchet ms" , sans-serif;"><i style="font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. I know I keep banging on about it. You could say I'm pixellated on it.</span></i><i><br /></i></span></div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com0tag:blogger.com,1999:blog-3637563600968316769.post-27269925322625841002020-05-13T19:59:00.000+01:002020-05-13T20:09:24.084+01:00Day Eighteen<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAc9GLTkdl69OLLhv3VvDaIz1vnsJDBgWk8WX89LwniyPKXWsoLySFJ3utHDxeZ6lv_vWJdr1WeL5-HKw9QIZbxcVzhDv8e7BIN1OqbtqwfQy6pblOqWrW59E3oDGCDB6IarDo_CQRiZE/s1600/Nurse.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="126" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAc9GLTkdl69OLLhv3VvDaIz1vnsJDBgWk8WX89LwniyPKXWsoLySFJ3utHDxeZ6lv_vWJdr1WeL5-HKw9QIZbxcVzhDv8e7BIN1OqbtqwfQy6pblOqWrW59E3oDGCDB6IarDo_CQRiZE/s320/Nurse.jpg" width="320" /></a><span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">The amount of forward planning that goes into these blogs ranges from negligible to non-existent.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">But I did actually think about today’s subject in advance, noting that it would be particularly appropriate for International Nurses Day. Yep, the International Nurses Day that was yesterday.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I’ll blunder ahead anyway.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">It’s a simple story, about one encounter with one nurse. It’s not about the palliative nurse who took such care to explain everything when my mum was dying. It’s not about the nurse that helped distract my daughter as she had to fast for a morning when doctors tested her growth hormone levels. It’s not about the nurse that put her arm around me as my girl went in for her spinal operation and I almost crumpled. It was a definite crump, but not a full crumple.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">No, it’s this one.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Seven years ago, I spent five hours in a waiting room on a busy Saturday morning, hoping a consultant paediatrician was covering what seemed like half the wards in the hospital could hold good on his promise to squeeze my daughter into his list. It was at a time when my girl had started going through bouts of sleepless nights, culminating in hallucinations, outbursts of laughter, anger, and even swearing. For f***’s sake, no-wonder I was worried - she hates swearing. Yes I do know it’s hard to believe with her being the daughter of Potty Mouth McGrew here. The sudden, terrifying, and totally uncharacteristic behaviours had me desperately worried that she might have a brain tumour. Spoiler alert: she didn’t. It turned out to be a mood disorder, which has since been managed fantastically well with medication.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p3" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s2" style="font-kerning: none; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">Soon after we arrived, e</span><span class="s1" style="font-kerning: none;">xhausted from four nights without any real sleep, feeling pretty hallucinatory myself, </span><span class="s2" style="font-kerning: none; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">I asked to speak to a nurse in a side room, away from my daughter, so she couldn’t overhear. I told her what had been happening, </span><span class="s1" style="font-kerning: none;">and everything hit me and I broke. I absolutely broke. I’m not certain if I actually fell, but if I did the nurse caught me, because I ended up being held up and hugged tight. I couldn’t speak, she didn’t offer any platitudes, she just held me and waited. It took a while.</span></span></div>
<div class="p4" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p3" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">That’s it. There’s no spectacular ending for you. She didn’t perform a life-saving operation. She didn’t discover a hitherto unknown medical disorder. She just did exactly what was needed. Then got me a cuppa.</span></span></div>
<div class="p4" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p5" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s3" style="font-kerning: none; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">And that’s why nurses</span><span class="s1" style="font-kerning: none;"> are f***ing awesome.</span></span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"><br /></span></span>
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"><a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-family: times; font-size: large; text-align: center;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a></span></span><br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div style="text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/OueyaMoUUt4/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/OueyaMoUUt4?feature=player_embedded" width="490"></iframe></div>
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"><i style="font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></i></span></span>
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"><i style="font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">Song is Etta James - Something's Got A Hold On Me</span></i></span></span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"><i style="font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;"><br />As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. The PWSA UK works with medical professionals, you know, to help them know exactly what do when it's a little more specific to Prader-Willi. </span></i></span></span></div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com1tag:blogger.com,1999:blog-3637563600968316769.post-50830719896859657592020-05-12T19:14:00.002+01:002020-05-12T19:14:29.744+01:00Day Seventeen<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEic1OWso3N-xHwh8PlxqUFh7f103zGq1e2w-pRkJXCPoBV1xdnl1lPPyiKDC_TaBa5E-SJC-HtlS3bWFjHEz7-zaXBFd7oeLc37tnj0sz7yA3XkmV5FBJUyvUNFBMOa1DuK0jxdyBQS8JE/s1600/Josie+Rovers+Return.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEic1OWso3N-xHwh8PlxqUFh7f103zGq1e2w-pRkJXCPoBV1xdnl1lPPyiKDC_TaBa5E-SJC-HtlS3bWFjHEz7-zaXBFd7oeLc37tnj0sz7yA3XkmV5FBJUyvUNFBMOa1DuK0jxdyBQS8JE/s400/Josie+Rovers+Return.JPG" width="400" /></a><span style="font-family: "trebuchet ms" , sans-serif;">I don’t know about you, but I could really do with a pint.<span class="Apple-converted-space"> </span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">My phone served up a random memory from my photo feed today - the lovely sight of my girl manning the pumps behind the Rovers Return. Although I would have preferred it if it had actually served up a pint, instead of a pic. When is technology going to match my expectations? Yes, we’ve got the internet, but why can’t I materialise a Mojito in my hand? Is it too much to ask? And while I’m at it, where the hell are our jetpacks? I blame Elon Musk. I don’t know why; maybe it’s because he looks like a waxwork dummy of Rick Astley that’s been left next to a hot radiator since 1987, but I blame Elon Musk.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">My hostelry-yearning has been sparked by lockdown life and my daughter <i>plaguing</i> me about going to the pub.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">“When will the pubs<span class="Apple-converted-space"> </span>open Mum? When can we go?”</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">If social services overheard the number of times she’s asked this in the past few days, I’d be put on both a reckless mother list and a 12 Step programme.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Perseveration, it’s called. People with Prader-Willi Syndrome often perseverate. It’s when an idea, a word, a phrase, or a question gets stuck in their mind, and recurs, even when the stimulus is no longer there. My girl just can’t shift gears sometimes, and repeats and repeats and repeats herself. Answering the question doesn’t help, even if you’ve got a nice black or white response. She’ll still repeat her query, over and over - and when the answer is ‘I don’t know’, then we’re in for Perseveration, The Director’s Cut.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">“So when will the pubs open, Mum? When can we go?”</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I probably should explain: her desire is actually for a specific family tradition - various members heading to the pub on a Saturday morning to have a coffee with Grandad. My uncle and aunt are regulars. Different combinations of nieces and nephews of mine intermittently attend. And my daughter is a stalwart of the pub troop. The coffee is often followed by a Guinness for Grandad and half a cider for my girl, possibly not unconnected with the fact that the Saturday Club has also been witness to some extremely ‘interesting’ pronouncements, declared by my daughter at high volume in no filter mode (telling her cousin she needed to visit a sperm bank, being one of the most memorable).</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">“So when will the pubs open, Mum? When can we go?”</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I don’t know, sweetheart.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">The pub club is on hold, like so many things are at the moment. thanks to the insidious Covidious coronavirus.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Like Covid-19 her perseveration is catching. She keeps reminding me of what I’m really missing: the warmth, the company, the hugs, the laughs, and the simple loving heart of these visits.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Plus the beer.</span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-family: "times"; font-size: x-large; text-align: center;"><a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-size: large;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a><br /><br /><i><span style="font-family: "trebuchet ms" , sans-serif; font-size: small; text-align: start;">Related blog posts: </span><a href="https://adrakesprogress.blogspot.com/2016/11/corrie.html" style="font-family: "trebuchet ms", sans-serif; font-size: medium; text-align: start;">Corrie</a><span style="font-family: "trebuchet ms" , sans-serif; font-size: small; text-align: start;">, </span><a href="https://adrakesprogress.blogspot.com/2018/12/baster.html" style="font-family: "trebuchet ms", sans-serif; font-size: medium; text-align: start;">Baster</a></i></span></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div style="text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/IEpzqLPwG7Q/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/IEpzqLPwG7Q?feature=player_embedded" width="490"></iframe></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i><br /></i></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i>Song is Amos Milburn - One Scotch, One Bourbon, One Beer</i></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i><br /></i></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-family: "times";"><span style="font-family: "trebuchet ms" , sans-serif;"><i style="font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. And while you're at it, write to Elon Musk, would you, and get him to knock the space travel on the head and invent a beer materialiser, please. </span></i></span></span></span></span></div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com0tag:blogger.com,1999:blog-3637563600968316769.post-22901630084224759112020-05-11T19:47:00.000+01:002020-05-11T19:47:48.512+01:00Day Sixteen<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghsI6X_KeES4ZCj8N7QsnJAlxgLtPdn6oWv3xRnHpO64Xo4jjZ_XwtRaUtGa6DYvAdyLH6Ohcva1vMS1C5EqnhkcU129Q9D0yxO9OahxUXCt4cIDeVz2mHmtTDZXWIdPUKzCEmkbgk2BA/s1600/Josie+giggling.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1219" data-original-width="1310" height="296" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghsI6X_KeES4ZCj8N7QsnJAlxgLtPdn6oWv3xRnHpO64Xo4jjZ_XwtRaUtGa6DYvAdyLH6Ohcva1vMS1C5EqnhkcU129Q9D0yxO9OahxUXCt4cIDeVz2mHmtTDZXWIdPUKzCEmkbgk2BA/s320/Josie+giggling.jpg" width="320" /></a></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span style="font-family: "trebuchet ms" , sans-serif;">I’ve been thinking about adjectives today.</span><span class="Apple-converted-space" style="font-family: "trebuchet ms" , sans-serif;"> </span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Not all day, that would be weird.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">If you want to know, my other thoughts have included: ‘The modern day definition of a Sisyphean task is trying to get a refund out of yer Ryanair bollix Michael O’Leary’; ‘Although I have finally got hold the Holy Grail of self-raising flour, I’ve forgotten how to bake a cake’; and ‘I must, at some point, clear up the dog sick in the garden’.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Right, so, back to the aforementioned adjectives - this morning I had to help my daughter identify them in some sentences as part of the English work set by her college. She also had to think of some adjectives of her own - one beginning with every letter of the alphabet. A dictionary was permitted, which was a godsend when it came to X and Z. (Xenophobic and Zesty, if you’re interested).</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">She was hesitant at first, and needed a few prompts and prods from me to really think about which words were the ones describing something. She worked her way through the exercise, gaining in confidence. You might say she applied herself to the task determinedly, stubbornly, resolutely, unshakably, and bigly (no, damn you Donald Trump,<span class="Apple-converted-space"> </span>you tangerine succubus, bigly is not a word).</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I realised something. In doing these daily blogs for the 2.6 Challenge, and trying to raise awareness about Prader-Willi Syndrome, it’s so easy to fall into the trap of using negative adjectives. The condition comes with a mass of challenges, and sugar-coating them doesn’t help anyone. (With PWS sugar-free not sugar-coated is definitely the way to go).</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">But sometimes you have to take a step back and celebrate the positives. Because there’s a plethora of positive adjectives that can apply to my daughter, despite of, because of, in addition to, and in conjunction with her syndrome.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Joyful, bright, happy, endearing, loving, funny, quirky, distinctive, delightful, engaging, beautiful, courageous, cheeky, loyal, astonishing.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Magnificent.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Yeah, that’s her adjective, right there.</span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-family: Times; font-size: large; text-align: center;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a></span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/Q_aMZWv-7FY/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/Q_aMZWv-7FY?feature=player_embedded" width="490"></iframe></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i><br /></i></span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i>Song is The White Stripes - Sugar Never Tasted So Good</i></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i><br /></i></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-family: "times";"><span style="font-family: "trebuchet ms" , sans-serif;"><i style="font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. They are more than a little responible for producing some of the positive adjectives mentioned above. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. Oh, and </span></i></span></span><span style="background-color: white; font-family: "trebuchet ms" , sans-serif;"><i>Hippopotomonstrosesquippedaliophobia, that word I told you about in <a href="http://adrakesprogress.blogspot.com/2020/05/day-fifteen.html">yesterday's blog</a>? It's the name for the fear of long words. </i></span></span></span></div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com0tag:blogger.com,1999:blog-3637563600968316769.post-26345992765743941532020-05-10T18:02:00.001+01:002020-05-10T18:20:46.844+01:00Day Fifteen<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF7_FJGmGQEFHd-DoTzOolo3090A-RQGCJsIAShAVXR26Ny7Gjenkusc7oSPMKq7TTkLv7CFxz1xIyf_VLmG7i1BqZRcfXQaGM20zkhcVm-Kaa1U0PI9x9zomb05TwmPy5WBLEjt48Ibc/s1600/Pan-bashing.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF7_FJGmGQEFHd-DoTzOolo3090A-RQGCJsIAShAVXR26Ny7Gjenkusc7oSPMKq7TTkLv7CFxz1xIyf_VLmG7i1BqZRcfXQaGM20zkhcVm-Kaa1U0PI9x9zomb05TwmPy5WBLEjt48Ibc/s320/Pan-bashing.jpg" width="213" /></a><span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I’ve not caught the clap.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">There you go, I’ve admitted it. During the coronavirus pandemic, people across the UK have been standing on their doorsteps every Thursday night, clapping to recognise the efforts of NHS workers and carers.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I, however, haven’t, because I hate nurses.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Not really. Jesus, learn to take a joke, would you?</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;">Look, it's not a competition. Just because you clap doesn't mean you love the NHS more than me. Just because I have a child with Prader-Willi Syndrome doesn't necessarily mean I love the NHS more than you. (But I probably do. Deal with it).</span> I expressed my love for the NHS as best as I could in a blog post marking its 70th anniversary: <a href="https://adrakesprogress.blogspot.com/2018/07/there.html">There</a>. Give <a href="https://adrakesprogress.blogspot.com/2018/07/there.html">There</a> it a quick read if you think I’m being an old cynic here.</span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">But there’s just something about the whole clapping - a nice idea for a one-off show of appreciation - that now feels like a empty gesture. Does an exhausted consultant, coming off a 12 hour shift, really feel better because Bob and Brenda from No. 22 banged a saucepan on Thursday night? I’m not sure that they do. Particularly if Bob and Brenda then invited Trevor and Sue and the kids round for a VE Day barbie because if there’s one thing that renders a ribonucleic acid-based virus non-contagious, it’s a bank holiday.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I love the NHS and I know and love people who work in the NHS. They don’t want to be thought of as angels or heroes - they just want the resources to do their job, save lives, and care for people safely. </span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">So I just can’t bring myself to clap along with Boris, our glorious ‘led by the science’ leader who seems to have achieved hero status for contracting and surviving the virus, despite <i>boasting</i> at a press conference about <i>shaking hands with everyone, including hospital patients, </i>but who<i> </i>still insists that government messaging throughout this crisis been clear, consistent and responsible.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">If clapping brings you comfort and hope, and you think it helps<span class="Apple-converted-space"> </span>- even if it’s only good for your own mental health, or if the kids find it fun - please carry on.<span class="Apple-converted-space"> Maybe I'm a miserable old cow, out of step with the rest of you. Maybe I deserve your opprobrium* (*for my opinions, not for my vocabulary - I'm smashing my 'learn a new word a day during lockdown' challenge! Tommorow, I'll tell you what </span></span></span><span style="font-family: "trebuchet ms" , sans-serif;"><span style="background-color: white;">Hippopotomonstrosesquippedaliophobia</span><b style="background-color: white;"> </b><span style="background-color: white;">means</span><b style="background-color: white;">).</b></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><span class="Apple-converted-space"><br /></span></span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">For now though, and for the foreseeable future, eight o’clock on a Thursday - when others are applauding and pan-bashing - will just happen to be the time I choose to chuck my empty booze bottles into the recycling bin. </span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Because if no-one can hear the chink of empties then it means I’m not an alcoholic, right?</span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-family: Times; font-size: large; text-align: center;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/iBuyAL-otK4/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/iBuyAL-otK4?feature=player_embedded" width="490"></iframe></div>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i><br /></i></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i>Song is The Meters - Handclapping Song</i></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i><br /></i></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i style="font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. And if you've already given, but are annoyed by what I've written today, I'm sorry, no refunds. Do come back, though. Remember: </span></i></span></span><span style="background-color: white; font-family: "trebuchet ms" , sans-serif;"><i>Hippopotomonstrosesquippedaliophobia, you know you want to know.</i></span></div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com0tag:blogger.com,1999:blog-3637563600968316769.post-41704125928296873402020-05-09T17:10:00.002+01:002020-05-09T17:11:41.283+01:00Day Fourteen<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQfQvL-UaqqEuGdT3bkk2BoVr8TSoFpVEEfAKFrWTK3uZw-y9lJZtYK6sK0GCGtTfxUo6_lVEoWUaidcDs7BgyhZLhp6Nc0UeCcw-dqEV0Lk2s__TqP-ZtySlhNU4-hWZ1m1508_cm_UQ/s1600/Snake+sports+car.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="229" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQfQvL-UaqqEuGdT3bkk2BoVr8TSoFpVEEfAKFrWTK3uZw-y9lJZtYK6sK0GCGtTfxUo6_lVEoWUaidcDs7BgyhZLhp6Nc0UeCcw-dqEV0Lk2s__TqP-ZtySlhNU4-hWZ1m1508_cm_UQ/s320/Snake+sports+car.jpeg" width="320" /></a><br />
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Today I want to talk about incomplete sexual development. No it’s not the answer to ‘Why do men buy sports cars?’ or ‘What could he possibly be over-compensating for by holding a large snake in his Tinder profile?’</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">No, I want to talk about it being one of the characteristics of Prader-Willi Syndrome. Sexual development in PWS is affected by the diminished or disrupted production of sex hormones. It’s called hypogonadism (the failure of the gonads to function properly - specifically the testes in men and ovaries in women).<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Firstly, I challenge you to say gonads without sniggering. Secondly, if you’re female - did you have ANY idea you have gonads? You live and learn, don’t you, Gonad Girl! *sniggers*.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">So what does it effectively mean for someone with PWS?<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Boys typically need an op for undescended testes, and both boys and girls usually have delayed and/or incomplete puberty. Confusingly, they often go through premature pubarche (development of pubic hair) earlier than the average, caused by something called adrenarche (these words, man, so many words), which isn’t actual puberty (just the stuff like hairy bits, oily skin etc. Hairy bits isn’t one of those official medical terms, in case you were wondering). So that’s helpful, when you’ve tried to explain carefully to your child that they might not go through all of the same changes as their peers so, apart from that one that they already have gone through but isn’t actually what it looks like. Clear? Good, I’m glad someone is.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Testosterone treatment for boys and oestrogen therapy for girls can be used to bring on puberty (either to induce it, or to kickstart and maintain it when it stalls).<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">For my daughter it involves taking an oestrogen pill, which finally brought on her periods at the grand age of 20. This is been an...interesting...development to deal with, not least because of the fact that her periods, although quite regular don’t start EXACTLY 28 days apart. And she does like to know EXACTLY when things will happen.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">One thing that is extremely unlikely to happen, however, is related to fertility. My girl will be unable to have children. I could explain more, but I’d have to use more of those medical words, and to be honest, I peaked with gonads.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">There have only been a handful of women with PWS in the entire world who have had a baby. It’s something we’ve been honest about with her since she was old enough to understand. She’s pretty matter-of-fact about it.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">“I can’t have babies, can I, Mum?”</span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">“No, sweetheart.”<span class="Apple-converted-space"> </span></span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">“But I am coping very well with my periods, really, very well.”</span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">“You definitely are, yes."</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">So, many years from now, it’ll be down to her brother to ensure our family line lives on, God help us. Is it wrong to make a mental note of suggesting Gonad as a name for our first grandchild? It is, isn’t it?</span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-family: Times; font-size: large; text-align: center;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/SvlcpJX4Dn0/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/SvlcpJX4Dn0?feature=player_embedded" width="490"></iframe></div>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i><br /></i></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i>Song is Arrested Development - People Everyday</i></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i><br /></i></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i style="color: #313131; font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. And keep coming back and reading. I mean, where else are you going to find out you've got gonads you never knew you had?</span></i></span></span></div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com0tag:blogger.com,1999:blog-3637563600968316769.post-81828802139968443662020-05-08T18:32:00.000+01:002020-05-08T18:32:07.771+01:00Day Thirteen<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4-fsqCzCKXTQLlOst1Z6kT_CEqfVQDtnfMx8_KhB3hYDG2MCPpuhPs1rMeGGBAtK5T_2s3TfxLmMuUBdu4Hd8Q-wvY8ybSMQb3TuQyrQ3cN-oK_aiRAiE5gQlQL3IqHErsaNcz2vzpGM/s1600/IMG_4887.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="267" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4-fsqCzCKXTQLlOst1Z6kT_CEqfVQDtnfMx8_KhB3hYDG2MCPpuhPs1rMeGGBAtK5T_2s3TfxLmMuUBdu4Hd8Q-wvY8ybSMQb3TuQyrQ3cN-oK_aiRAiE5gQlQL3IqHErsaNcz2vzpGM/s400/IMG_4887.jpg" width="400" /></a><span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I’ve seen lots of jokes and memes on social media during the coronavirus lockdown about how people have no idea what day it is. I disagree. If you’re attempting to home-school, you know how far from the weekend you are, <i>exactly</i>.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">So today is definitely a Friday, but not just any old Friday. It’s Bank Holiday Friday switcherooed for Bank Holiday Monday due to the 75th anniversary of VE Day, and I am mainly celebrating it for being a ‘no school’ day in a time of no school. No school squared, if you like.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I attempted a bit of mild parental responsibility this morning by chatting to my kids about what VE day meant. We cut out some paper to make bunting and got covered in oil pastels. I made a tiny bit of a ‘jingoistic isolationism leads to very bad things’ point by making sure we included not only Union Jacks but also flags from some of the other nations who had just a little bit to do with defeating the Nazis - you know, the ALLIES.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">But my daughter wasn't entirely focused. She binned five pennants after colouring white bits blue and blue bits red, all because she has been concentrating on one thing, which was most assuredly not celebrating the anniversary of the end of the deadliest conflict in human history. No, it was watching a TV programme.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">She has waited two years and four months for the third series of BBC drama The A Word to be made and aired, checking the TV guide every week to make sure she knew when it finally dropped. “When will Series 3 of The A Word be on?” is a question that might haunt me on my deathbed, alongside: “Will sleeping on my back make me shorter?”. On Tuesday it hit the screen, and she watched it on catch-up the next day (as it aired past her bedtime).<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Today, she’s been plaguing me and her dad to watch it with her.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">“Yes, we will watch it with you,” I explained. “But I’ve got to get Grandad’s medicine/cook the barbecue/write my blog/have a poo* first...” (*these activities were carried out consecutively, not concurrently, you’ll be pleased to know).<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">So I’m off now, to curl up on the sofa and watch a drama about the family of a little boy with autism. “Like me, Mum, I’ve got a diagnosis of autism too, haven’t I, and people with Prader-Willi have a bit of autism don’t they?” my girl will tell me, numerous times throughout the show. Trust me, she won't be able to help herself. I might put the subtitles on so I have a chance of getting some of the dialogue.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Once she’s in bed, it’s my boy’s turn to choose the viewing, and tonight will be the sixth movie in his grand rewatch of the Marvel Cinematic Universe in chronological order of the narrative. So it’s Thor. Which just makes me look forward to that time in the future when cinemas will open their doors again and I can march up to the desk and request: “Four for Thor 4”. What a time to be alive!</span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-family: Times; font-size: large; text-align: center;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a></span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/dawFWa0hfL4/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/dawFWa0hfL4?feature=player_embedded" width="490"></iframe></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i><br /></i></span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i>Song is Julian Cope - Trampoline (from the soundtrack of The A Word).</i></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i><br /></i></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i style="color: #313131; font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. Think of all that money you're currently saving not going to the cinema. You'll still have enough left for four for Thor Four, honest.</span></i></span></span><br />
<br />
<br /></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span></div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com1tag:blogger.com,1999:blog-3637563600968316769.post-83665105773444738462020-05-07T18:35:00.000+01:002020-05-07T18:44:42.817+01:00Day Twelve<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC0an0-2PYy-fFrC8F5xqa_YE5wv3myl9TkCRYsdFcymlcGSncyblcexsrhyphenhyphenCao8_VlFM3ftrAyqmZOBBzu5dXGqd541FrAvsGyzJrFatc4byOOhagRlxKPYBsr-wFHK_dqm5mNdAy7CE/s1600/IMG_4862.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC0an0-2PYy-fFrC8F5xqa_YE5wv3myl9TkCRYsdFcymlcGSncyblcexsrhyphenhyphenCao8_VlFM3ftrAyqmZOBBzu5dXGqd541FrAvsGyzJrFatc4byOOhagRlxKPYBsr-wFHK_dqm5mNdAy7CE/s400/IMG_4862.jpg" width="300" /></a><span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">There are some things humans yearn for. You know: eternal youth, comfy pants, </span></span><span style="font-family: "trebuchet ms" , sans-serif;">world peace, </span><span style="font-family: "trebuchet ms" , sans-serif;">a self-replenishing wine glass. That sort of thing.</span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">What I find myself wishing for most often, apart from the wine glass thingy, is a little bit of calm.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Anxiety looms large in our household. Chief Loomer is my daughter. Anxiety is a huge issue with many children and adults who have Prader-Willi Syndrome, and my girl can sometimes be a little fizzing firework of anxiousness.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">It’s fuelled by the PWS physical hunger and obsession with food and the inability to deal with emotions. It’s sparked by changes to routine and random - innoculous, and sometimes...um...nocculous, triggers.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Patience is needed. You have to learn when to let the anxiety run its course, when to intervene, when to ignore and how to distract. I always do the right thing and <i>never</i> lose my shit, obviously.<span class="Apple-converted-space"> </span>Well, I say <i>never</i>, but I would like you to see something my daughter wrote on the poster she filled out after a morning of persistent, repetitive, anxious avalanches. On it, she had to describe what she could see hear, touch and smell in her immediate surroundings.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">First on the list of sounds was...shouting. Yes, on the family <i>Mindfulness</i> exercise, designed to instigate calm and restore equilibrium, the thing she listed hearing most was me, shouting.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">The smells she listed in the next section included wet dog and bonfire smoke (incidentally, if it been last week she could have actually put down barbecued dog hair, as the dog managed to wedge himself under the barbecue for long enough to set himself ever so slightly on fire), but she missed the strongest aroma. The stench of guilt coming from me.</span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-family: Times; font-size: large; text-align: center;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/sFnIMGoxXt0/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/sFnIMGoxXt0?feature=player_embedded" width="490"></iframe></div>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Song is The Housemartins - Anxious</span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i style="color: #313131; font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. You can be motivated by altruism or even guilt, I don't mind.</span></i></span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span></div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com0tag:blogger.com,1999:blog-3637563600968316769.post-17129288979181187342020-05-06T18:11:00.002+01:002020-05-07T18:16:52.658+01:00Day Eleven<div class="separator" style="clear: both; text-align: center;">
</div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOtK0R8ObbDBGV6frnK9vn8WZ0d-TDIopRokbqK7ewahc_HDKoiIqcCFZJDjzA0QcyjMd98o0t4QVCVpTlmBsB9Du5Y67p2lZq886wee5iPg4PxpgdxYTryE3ZELNxwOj5EZ4n5o0KRAE/s1600/Polly+%2526+Josie+Zoom+chat.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="165" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOtK0R8ObbDBGV6frnK9vn8WZ0d-TDIopRokbqK7ewahc_HDKoiIqcCFZJDjzA0QcyjMd98o0t4QVCVpTlmBsB9Du5Y67p2lZq886wee5iPg4PxpgdxYTryE3ZELNxwOj5EZ4n5o0KRAE/s400/Polly+%2526+Josie+Zoom+chat.jpg" width="400" /></a>Technology brings me several joys (including the obvious, like Netflix, Spotify, and reading my Kindle in the bath. Although, in case you're wondering, no, unlike a real book, an overnight straddling of a radiator will not revive a dipped Kindle. But it will burn your thighs <i>*thank you, I'm here all week*</i>).<br />
<div>
<br /></div>
<div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh77hToiQ5ZGnQKr6n36eIUT756Rp-q3HnomjLPxnTXzWNRsP06upAYBQMDj7lropkC7Tw6r3BxRvXpnX8p2xycL4DHCTnGvZxuP9r1540AGqUidy8KzFa95I7cEphJuQkF_YcoqMTtDBw/s1600/summer+reading+copy.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="397" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh77hToiQ5ZGnQKr6n36eIUT756Rp-q3HnomjLPxnTXzWNRsP06upAYBQMDj7lropkC7Tw6r3BxRvXpnX8p2xycL4DHCTnGvZxuP9r1540AGqUidy8KzFa95I7cEphJuQkF_YcoqMTtDBw/s400/summer+reading+copy.jpg" width="400" /></a>I could happily binge all day on my daughter's texts and emails, for example. A particular favourite during the lockdown has been discovering that she emailed the local library to ask if she can join the annual summer reading scheme. Upon closer inspection - and discounting the fact that libraries are currently closed due to the Covid-19 crisis - it seems she's actually messaged the Tennessee State Library & Archives, who sent a very friendly reply, suggesting that perhaps she meant to send it to the Nashville Public Library. She really didn't.<br />
<br />
But the biggest joy today was watching my girl video chat with her little PWS buddy Polly, who is celebrating her 9th birthday.<br />
<br />
She first met Polly years ago at one of the Prader-Willi Syndrome Association UK family weekends, and usually sees her every year at one of these amazing events, where people with PWS and their friends and families get the chance to meet, swap advice, share stories, and just hang out in a world where your abnormal normal is EVERYONE'S normal.<br />
<br />
We thought it would be nice to wish Polly a socially-distanced Happy Birthday online, so we prised the laptop from my son's cold dead hands (the only way he'd relinquish custody of it), set up a Zoom meeting, and let the girls hold one of their very unique conversations. These chats, as in real life, are stop start, a bit random, and involve every level of interaction from intense interest to daydreaming and silence, with giggles in between.<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
The highlight was the off-camera arrival of the postman at Polly's house, delivering a birthday present from some family friends, which was then brought into camera shot, and opened. My daughter thought the live-streamed unwrapping of a personalised cushion was the best darn tootin' thing she'd seen all day, as they'd probably say at Nashville Public Library.<br />
<br />
<a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-family: Times; font-size: large; text-align: center;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/2rJCwd1v0_Y/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/2rJCwd1v0_Y?feature=player_embedded" width="490"></iframe></div>
<br />
<i style="color: #313131; font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">Song is Carole King - Wrap Around Joy</span></i><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i style="color: #313131; font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></i></span></span><span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i style="color: #313131; font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. I've not donated as much as I wanted to, for example, as I suspect I'm going to have to save up for some transatlantic library fines...</span></i></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com0tag:blogger.com,1999:blog-3637563600968316769.post-18270052715812854802020-05-05T19:08:00.000+01:002020-05-05T19:09:38.374+01:00Day Ten<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZCnLTylNhDMTWxowsEmrbdNvAiv1sWaTcxB8gkDMsPN_mhTskfOiOB192SllT-ziAAjfQnhWrOsOt70DXaxE1sI-Jp5rNVTPWYejCWzgBQoBJB1AExa2J1ZI4twE2NCm7v_gllI-9r_8/s1600/Fruit+maths.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="735" data-original-width="850" height="276" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZCnLTylNhDMTWxowsEmrbdNvAiv1sWaTcxB8gkDMsPN_mhTskfOiOB192SllT-ziAAjfQnhWrOsOt70DXaxE1sI-Jp5rNVTPWYejCWzgBQoBJB1AExa2J1ZI4twE2NCm7v_gllI-9r_8/s320/Fruit+maths.jpg" width="320" /></a></div>
<span style="font-family: "trebuchet ms" , sans-serif;">The last attempt to help my daughter with college maths work saw me not only reach the end of my tether but run screaming towards the distant horizon with it looped by a single strand around my ankle. </span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>
<span style="font-family: "trebuchet ms" , sans-serif;">Today we returned to the subject.</span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span style="font-family: "trebuchet ms" , sans-serif;">This was, obviously, only after I'd cleared my head of the Post Traumatic Maths Disorder flashbacks of my girl </span><span style="font-family: "trebuchet ms" , sans-serif;">simply <i>refusing</i> to tell me a Rubik's cube was called a Rubik's </span><span style="font-family: "trebuchet ms" , sans-serif;">cube</span><span style="font-family: "trebuchet ms" , sans-serif;"> just to make the point that she definitely didn't know the names of 3D shapes, </span><i style="font-family: "Trebuchet MS", sans-serif;">including the ones she did.</i></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIlFPkzObc5HRHCDkuO46FHdCrzXR8leGr0EdE_la9tS5dFxeuYq2B2CfdqUbul_iviX8U-Dn__4Z03f15a0DyXiAlF6-_qI3W_I8A2h8AAqmuRJ5osKXvT9PRkDNvTtm3d8O5_keI3qE/s1600/IMG_4869.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIlFPkzObc5HRHCDkuO46FHdCrzXR8leGr0EdE_la9tS5dFxeuYq2B2CfdqUbul_iviX8U-Dn__4Z03f15a0DyXiAlF6-_qI3W_I8A2h8AAqmuRJ5osKXvT9PRkDNvTtm3d8O5_keI3qE/s400/IMG_4869.jpg" width="300" /></a><span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">So in my capacity as Headteacher, Adminstrator, and ‘Specialist In Every Subject Once I’ve Googled The Answer’ at the laughably chaotic home education unit formerly known as my home, I tried something new with her: the hands-off approach.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">In general, my daydreamy girl needs prompting to complete tasks. When it comes to maths, there's the added difficulty of her stubbornly announcing over and over again that ‘this is not my strong point’ as she decides she cannot do a task before she has even looked at it.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">So I presented her with a fait accompli, deliberately printing off an </span></span><span style="font-family: "trebuchet ms" , sans-serif;">easier exercise from the college website, telling her she was perfectly capable of completing it without help, and leaving her to it.</span><span class="Apple-converted-space" style="font-family: "trebuchet ms" , sans-serif;"> </span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I’d love to add that I then retired to the garden for a mojito, cigar, and an intimate massage from my live-in Cuban pool boy, but this did not happen, as I’ve had to furlough Miguel, because there’s only so many staff you can keep on in these difficult times. So instead, in...you know...the actual <i>real</i> world, I grabbed a cuppa and transferred my attention to my son's schooling, the highlight of which was us looking at our garden as a microhabitat, and him asking me if the empty beer bottles spilling out of our recyclying bin counted as part of the ecosystem. The cheeky git.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;">More than an hour later, my daughter announced she had finished. The handful of questions (involving counting and comparing the amounts of different items of fruit) had taken a loooooong time, partly because she had obviously been grappling with her ‘can’t do maths’ blinkers, and partly because she’d decided to hand-write a 100 number grid to help her add up sums like 6 plus 4. (If you look at the picture, you’ll see she must at some point have realised she didn’t need to go all the way to 100, and scribbled out all the numbers above 14).</span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">But she did it. I don’t care that she’s 21, and the questions were easy enough for a very young child. She did it. And I discovered that sometimes the best method of teaching her is not to.</span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-family: Times; font-size: large; text-align: center;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/gg8vgOahX68/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/gg8vgOahX68?feature=player_embedded" width="490"></iframe></div>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i style="color: #313131; font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">Song is Arlette Zola - Mathématique Elémentaire </span></i></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i style="color: #313131; font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></i></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i style="color: #313131; font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page. Thanks to every one of you who has donated 2.6 bananas, or 26 bananas, or any other amount of fruit. Please give money next time, though, yeah?</span></i></span></span><br />
<br /></div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com2tag:blogger.com,1999:blog-3637563600968316769.post-6252668829541556022020-05-04T18:10:00.002+01:002020-05-04T18:10:36.048+01:00Day Nine<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEih1z3d8Hg9XOnDCYzx8CPJOed4zv5-ZZ2DU1dFY7CwpKVrV3XsX_OaJRi-RXvvWhQcJC8EUOWthgOrofW4ltSXArNanC6QqtbXzHR38IBbi8Hw6Ir_7k6TPeZb0HYpoNw-4QNuzyQY9Xs/s1600/IMG_4821+2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="102" data-original-width="179" height="227" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEih1z3d8Hg9XOnDCYzx8CPJOed4zv5-ZZ2DU1dFY7CwpKVrV3XsX_OaJRi-RXvvWhQcJC8EUOWthgOrofW4ltSXArNanC6QqtbXzHR38IBbi8Hw6Ir_7k6TPeZb0HYpoNw-4QNuzyQY9Xs/s400/IMG_4821+2.jpg" width="400" /></a></div>
<span style="font-family: "trebuchet ms" , sans-serif;">Being the best isn’t always better than being mediocre. Not for everyone.</span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Let me explain.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I’m currently basking in the glory of winning last night’s weekly family quiz night (yes, I know it’s been nearly a whole day, but when I get a basking chance I basking take it). My daughter, however, has had a slightly different reaction.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">The quiz is hosted by my niece, an all round good egg, who lives in New Zealand, and so selflessly gets up at silly o’clock in the morning to be sober quizmaster to a selection of relatives and friends whose levels of heckling increase in direct proportion to the amount of alcohol they neck. Which is a lot.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">So far our family team has been named ‘The Antibacterial Handjobs’, ‘The Bastard’s On Nights But He Was No Use Last Week Anyway’, ‘The Disinfectant Injectors’, and, cumbersomely, ‘We Haven’t Got It Wrong We’re Just Social Distancing Ourselves From The Answers’.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">My son joined us for the first one but has since decided to self-isolate with his X-Box. My daughter, in comparison, is completely fascinated by the whole thing, not least because she is allowed a Kopparberg fruit cider, which is essentially industrial-strength giggle fuel for her.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">People with Prader-Willi Syndrome can be very obsessive, and can become easily fixated on things. This has happened with the quiz. My girl is obsessed with us finishing ‘mid-table’. ‘Mid-table’ is such a great, sports pundit-type, expression. It must have been the first or second week when my girl asked us “Why didn’t we win?”<span class="Apple-converted-space"> </span>and my husband told her: “Oh, no, it’s fine, darling, mid-table is a good place to finish.” She has taken this on board as an important goal, despite - and I am 100% sure of this - having no idea what finishing ‘mid-table’ means.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">So when - thanks to playing our joker very successfully in the Music round and a strong showing in the Wild Card round (where you have to be fastest team to dash round the house to fetch a list of items) - we ended up winning the quiz, my girl wasn't initially triumphant. </span></span><span style="font-family: "trebuchet ms" , sans-serif;">I felt a humming next to me on the sofa (no it wasn’t a vibrator, my niece hasn’t asked us to fetch one of those in the Wild Card round. Yet. And yes, bedside drawer, of course. What am I, a nun?). The ‘hum’ is what I call that indefinable change in the body language and in the air around my daughter when she begins to get anxious. It’s almost like an electrical charge, and you can physically </span><i style="font-family: "Trebuchet MS", sans-serif;">feel</i><span style="font-family: "trebuchet ms" , sans-serif;"> her anxiety levels starting to rise.</span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">“Are we mid-table, Mum, are we mid-table? We like to be mid-table, don’t we? Are we mid-table? Is first place mid-table?”</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I gave her a long look, and resorted to what I call the ‘Easy Life Defence (With The Caveat That This May Be Storing Up Trouble For<span class="Apple-converted-space"> </span>A Later Date)’. The best prior example of this was telling her that yes, cutting her food in two does mean that she has twice as much.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">You’re probably ahead of me. What was my reply to: “Is first place mid-table?”</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">“Yes, sweetheart, yes it is.”</span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-family: Times; font-size: large; text-align: center;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a></span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/jCrRswOGgbo/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/jCrRswOGgbo?feature=player_embedded" width="490"></iframe></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i><br />Song is Sugababes - In The Middle</i><i style="color: #313131; font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></i></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i style="color: #313131; font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. It's a title-winning team, with not even mid-table level funding (do you see how I tied this in with today's blog? Do you see?) If you can, please go to my Just Giving page. Thanks to everyone of you who has donated 26p, £2.60, £26 or any other amount. </span></i></span></span></div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com0tag:blogger.com,1999:blog-3637563600968316769.post-78751738699797754632020-05-03T16:25:00.003+01:002020-05-03T16:25:48.031+01:00Day Eight<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSCmQYJ-cVhF2uc3M2Ohd64cuBtxrLk1tCCSS7uBvqVy3nigUzj4KPUT1gfGb_1-xkDze6uC2NlTf7CFViccb6sApp2Lr4QAJHKvZ3tmP5n0G6DinPuAqZPnwwfp5hevuPXeIHqMFl4Ko/s1600/Emotions.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="591" data-original-width="1051" height="178" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSCmQYJ-cVhF2uc3M2Ohd64cuBtxrLk1tCCSS7uBvqVy3nigUzj4KPUT1gfGb_1-xkDze6uC2NlTf7CFViccb6sApp2Lr4QAJHKvZ3tmP5n0G6DinPuAqZPnwwfp5hevuPXeIHqMFl4Ko/s320/Emotions.jpeg" width="320" /></a></div>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">My hour-long daily dog walk gives me time for some deep contemplation about life and the beauty of nature. Although this morning I had to pick up a labrador turd from next to a dead pigeon, so, there’s that.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">It was a fragrant start to what, by my calculations, is the 42nd day of UK lockdown measures, and Day Eight of my charidee blogathon. Only Day Eight and I’m writing about dog poo. God help us all.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Yesterday I spoke about food, and the insatiable appetite that affects people with Prader-Willi Syndrome.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Today, it’s another biggie - emotional immaturity.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I’m not talking about simply having a short fuse, like my brother did when we were kids and I used to be able to make him lose his shit <i>instantly</i>, with one laser-targeted insult. It was as easy as snapping my fingers, which was ironic, as he did, on one occasion, snap my finger. And burst a blood vessel in my eye when his wild attempt to give me a dead arm missed and connected with my eyeball instead. He’s a police officer now, which I hope you will find reassuring.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">No, the kind of emotional immaturity I’m talking about is the PWS person’s inability to understand and control their emotions.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">The loss of control can take different forms: ‘temper tantrums’ more akin to a toddler’s; violent rages (a hefty teenage boy with PWS who has had testosterone supplements can be a frightening, unstoppable force); or sobbing meltdowns.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">My girl’s speciality is the latter, a wave of crying that comes over her - sometimes with an obvious cause, sometimes not - that you have to sit and wait out, as while it happens she is oblivious to anything you are saying. You know, like how your mate got after she came round and drank two bottles of merlot after that terrible break-up and then just wouldn’t stop, despite you telling her she was better off without the bastard. The only difference with my girl is that when the tide rolls back and she stops crying, she suddenly clicks back to normal, as if nothing has happened. Not like your mate, who will spend the next half hour telling you she bloody loves you. And then puke.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMiTHPVbxQb0CWv2i5n4EepPjeZFoApLPlB9xv09mztkGFXzXI_vUs2-fhnvnIOdIaClA5UGivHFGJit1sa16doIjCX-WNikE-kXQa_76DhfRAEsw6KS1xYwHBWvK8POxXyj2trQLIPyA/s1600/IMG_4816.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMiTHPVbxQb0CWv2i5n4EepPjeZFoApLPlB9xv09mztkGFXzXI_vUs2-fhnvnIOdIaClA5UGivHFGJit1sa16doIjCX-WNikE-kXQa_76DhfRAEsw6KS1xYwHBWvK8POxXyj2trQLIPyA/s320/IMG_4816.jpg" width="240" /></a><span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">The flip side of my daughter’s emotional meltdowns are that when you think she might have one, she won’t. When my mum, her beloved Nanna, died, she informed me that she felt like she should cry but she probably wouldn’t. She doesn’t understand emotions, even if she sometimes gets the theory of them, she can’t always recognise what she or others are feeling.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">Today, the feels are good, though. My daughter is curled up on the sofa watching a 1994 film adaptation of Black Beauty, happy and fascinated and not questioning the logic of a horse whose inner voice is narrated by Alan Cummings. My boy is near me, but not needing my immediate attention, as he is lost in the world of Minecraft. So I’ve been left alone long enough in daylight hours (for 42 minutes to be precise) to listen uninterrupted to an entire LP (a rather splendid pink vinyl copy of St. Vincent’s Masseducation). Although it may now have a scratch on it from where I was a bit clumsy leaping up to lift the needle when I remembered too late that the chorus to 'New York' contains not one, not two, but three perfectly enunciated ‘motherf***er’s.</span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-family: Times; font-size: large; text-align: center;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/zR-IQlpQASg/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/zR-IQlpQASg?feature=player_embedded" width="490"></iframe></div>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i>Song is St. Vincent - New York. You're all right if your kids are listening: this version says 'you're the only <b>other sucker'</b>. I mean, I prefer the sweary one, but I thought I'd treat you to the catsuit.</i></span></span><br />
<br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i style="color: #313131; font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page. All of you who have donated 26p, £2.60, £26 or any other amount are awesome <strike>motherf***ers,</strike> sorry, suckers.</span></i></span></span></div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com0tag:blogger.com,1999:blog-3637563600968316769.post-8911367411146237202020-05-02T17:12:00.004+01:002020-05-02T17:32:09.772+01:00Day Seven<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiELtEeePcqdBoj5f1NrP-Z-_g1q94P0EGR4OioBNUq9E-2VMvwRoq_c4KKEkYpOaW4DCpzjJal9GggLe1dZzRZrA04N5YbNS80deGMAx_RnQotnvCtjCJdlYmtCbnMEm6ZPMFWoIaqBaU/s1600/fridge+lock.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiELtEeePcqdBoj5f1NrP-Z-_g1q94P0EGR4OioBNUq9E-2VMvwRoq_c4KKEkYpOaW4DCpzjJal9GggLe1dZzRZrA04N5YbNS80deGMAx_RnQotnvCtjCJdlYmtCbnMEm6ZPMFWoIaqBaU/s400/fridge+lock.jpg" /></a>As the Great Discombobulation of 2020™ continues its relentless progress, my erudite and philosophical* marathon musings (*brainfart blogs) continue apace.<br />
<br />
Writing a blog a day for 26 days during the Covid-19 lockdown (to raise funds for the Prader-Willi Syndrome Association UK) is more taxing than you might think. My fingertips are vaselined up to prevent keyboard chafing, and I've done my nipples too, but that was just because it felt nice.<br />
<br />
So as we reach Day Seven, I've decided to talk about the biggest cannon in the syndrome's artillery: FOOD. Or more specifically, the overwhelming and insatiable appetite that affects people with Prader-Willi, and their consequent obsession with food.<br />
<br />
It's both physical (the trigger in their brain which should signal that their stomach is full doesn't work), and mental (imagine being hungry all the time and how much this would dominate your every thought).<br />
<br />
Some families have to lock their fridges, kitchen cupboards, and even bins, to prevent their PWS child or adult food seeking and stealing (there have been cases of people eating frozen food when fridges but not freezers were locked). Not every person with PWS has such extreme behaviours, but almost all have a life-changing and challenging relationship with food.<br />
<br />
So the current Covid-19 shituation (yes, I have spelled shituation correctly) is particularly effing excruciating for many PWS families. Someone with PWS finds coping with changes to routine difficult at the best of times, so many just cannot understand why the supermarkets have gone all weird, their favourite foods are often not available, and when it comes to shopping for food, their Mum or Dad are no longer preferring the 'little and often' technique, but instead are doing it 'on a bigger scale but less frequently'* (*coincidentally, this last phrase also applies - thanks to my husband's shift patterns and the kids being home all the bleeding time - to our sex life. Oh, God, I seem to have typed that out loud).<br />
<br />
Where was I? Oh yes, the food thing. In lockdown this is proving doubly difficult for everyone because normal distraction techniques often involve taking the PWS person away from the home and in particular away from the temptations contained within the kitchen (for us this means going to the library, heading to the cinema, visiting Grandad, or going for a walk, the first three of which we can't do, and the last of which we can only do once a day).<br />
<br />
So if you're currently enjoying an 'interesting' relationship with food (aimless fridge foraging I believe is a current 'thing'), just subsitute <i>raging hunger </i>as your motivation to munch instead of merely just boredom, and spare a thought for someone with PWS.<br />
<br />
You could also spare a quid or two, if you like.<br />
<br />
<a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-family: Times; font-size: large; text-align: center;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/4goCijDswHc/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/4goCijDswHc?feature=player_embedded" width="490"></iframe></div>
<i><br /></i>
<i>Song is Spearhead - Food For The Masses </i><br />
<br />
<i style="color: #313131; font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page. I can't express my gratitude enough to everyone who has contributed so far. Well, I can't express it now, but I can when social distancing rules are relaxed. </span></i><br />
<i style="color: #313131; font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">You guys who have given are great. </span></i><i style="color: #313131; font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">You other guys who haven't given yet could achieve greatness. </span></i><i style="color: #313131; font-family: times;"><span style="font-family: "trebuchet ms" , sans-serif;">And OK, I promise not to thrust greatness upon you.</span></i><br />
<br />Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com0tag:blogger.com,1999:blog-3637563600968316769.post-64774644818977971692020-05-01T15:51:00.001+01:002020-05-01T15:59:26.262+01:00Day Six<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV7ZqFZgh-gZlLGJpl5LD2KYc-6RZN9bLOxcGvuFy0fuskdvHqQ-xjUodVq6ph9-DT1381Z04dUnR-jtlHM18hWBMCjRQMHKh2NGz65IBFM4AuV7Nu8yYUdXU_pMNV4MmgHREpp5g-HnM/s1600/IMG_4813.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="640" data-original-width="502" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV7ZqFZgh-gZlLGJpl5LD2KYc-6RZN9bLOxcGvuFy0fuskdvHqQ-xjUodVq6ph9-DT1381Z04dUnR-jtlHM18hWBMCjRQMHKh2NGz65IBFM4AuV7Nu8yYUdXU_pMNV4MmgHREpp5g-HnM/s320/IMG_4813.jpg" width="251" /></a></div>
<span style="font-family: "trebuchet ms" , sans-serif;">I’m not saying things have gone feral here, but I have been reduced to grunting and burning stuff.</span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">I had a pile of paperwork half as tall as me to dispose of, but once my ancient shredder died after three sheets, I decided fire was a valid option. Being all middle class, this resulted in me ordering a chiminea.<span class="Apple-converted-space"> </span>A cheap chiminea, cheap chiminea, chim chim chiminea (apologies, but I’ve been singing this all day).<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">When the socially-distanced delivery driver dropped it and ran, I roped the kids into helping me with the Some Assembly Required. The only lesson anyone learned from this decision was ‘Don’t’. Don’t involve your kids in any form of required assembly.</span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRMBD8Hd1OHKokVG89sM_mlgvmXOxCFD7wLCIaePp9WuoLo4DCmofZPTH0NisexWZ8GsJ_6DV2veJi17ZDotnaEdd8rw0lhDHGHTE2ZDRomKKZDNPxTsi8aAjXx7Afd9HjabyZ8vSzYnQ/s1600/IMG_4767.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRMBD8Hd1OHKokVG89sM_mlgvmXOxCFD7wLCIaePp9WuoLo4DCmofZPTH0NisexWZ8GsJ_6DV2veJi17ZDotnaEdd8rw0lhDHGHTE2ZDRomKKZDNPxTsi8aAjXx7Afd9HjabyZ8vSzYnQ/s320/IMG_4767.jpg" width="240" /></a><span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">So I’m sitting in the garden, eyeing the grey clouds and incinerating my way through the stack of papers. If you're wondering where the pile has come from, most of it is from my daughter, and is related to her Prader-Willi Syndrome (PWS). Because when someone has PWS they also automatically become a GOSOP </span></span><span style="font-family: "trebuchet ms" , sans-serif;">(Generator Of Shitoads Of Paperwork). This monster pile included</span><span style="font-family: "trebuchet ms" , sans-serif;"> my girl’s old Independent Education Plans, out of date Statements of Special Education Needs, and hospital letters from long-retired consultants, much of it dating back to the early 2000s (I’ve got three boxes of more recent paperwork that are going to remain in the loft, probably for another decade or so!). </span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCG8GSGZpgcjXJX0nk7e9afTxNrRROUkTbAa0Dn115JQScMGn-_wO8B5fmsLtCfmMILaNGUmdeiZkQ1F9FGIaX0zRbDT7C4UsxYbWrAggj3orNWvMg4koSqF338psNB05RoV-TyKodDH0/s1600/IMG_4683.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCG8GSGZpgcjXJX0nk7e9afTxNrRROUkTbAa0Dn115JQScMGn-_wO8B5fmsLtCfmMILaNGUmdeiZkQ1F9FGIaX0zRbDT7C4UsxYbWrAggj3orNWvMg4koSqF338psNB05RoV-TyKodDH0/s320/IMG_4683.jpg" width="240" /></a><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>
<span style="font-family: "trebuchet ms" , sans-serif;">For those of you who would like to paint a mental image of me, my rapidly greying hair is sticking up in wind-blown tufts and I have a 1000-yard stare from this morning's home schooling (which included a science experiment involving a bag of margarine and some ice cubes, plus a lesson with my maths-intolerant daughter on 3D shapes which left me wanting to make a human sacrifice of myself on this very chiminea). </span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>
<span style="font-family: "trebuchet ms" , sans-serif;">I am dressed, optimistically, in a T-shirt, shorts and flip flops, which is OK because this bonfire of the sanities is generating some proper heat, and I don’t care, it’s April, and I will now be wearing my shorts until October, because I’m hard, me.</span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">My daughter has emerged from inside, asked if she can poke the flames, and announced that I ‘smell of smoke’.<span class="Apple-converted-space"> </span></span></span></div>
<div class="p2" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; min-height: 14px;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span class="s1" style="font-kerning: none;"></span><br /></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">“Why do you think that is?” I asked.</span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;">“Oh, it’s because you’re using the chimpanzee-er.”</span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><a href="https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972" style="font-family: Times; font-size: large; text-align: center;"><span style="font-size: x-large;">https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972</span></a></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/we2fbRsd5Uc/0.jpg" frameborder="0" height="380" src="https://www.youtube.com/embed/we2fbRsd5Uc?feature=player_embedded" width="490"></iframe></div>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i>Song is Isobel Campbell & Mark Lanegan - The Flame That Burns</i></span></span><br />
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span>
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><i style="color: #313131; font-family: Times;"><span style="font-family: "trebuchet ms" , sans-serif;">As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page. I've been overwhelmed by everyone's generosity in these uncertain times. THANK YOU to everyone who has already donated! 26p or £2.60 or any amount you care to give - it's all hugely appreciated, unlike my promise to hand out post social distancing sexual favours to those donating £26 or above, which has seen a number of less than enthusiastic responses. What's wrong with you all? If you could see me in my flip flops, standing by the chiminea, holding the fire tongs provocatively, you'd soon change your tune...</span></i></span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span></div>
<div class="p1" style="-webkit-text-stroke-color: rgb(0, 0, 0); font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
<span class="s1" style="font-kerning: none;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span></span></div>
Drakeygirlhttp://www.blogger.com/profile/04044143270148143924noreply@blogger.com0