Puffed

Pneumonia. Her left lung was very hazy on the X-ray and there's essentially a lot of gunk stuck there that needs to shift.

My daughter is on oxygen through a nasal tube. She's still not getting enough air into her gunky lung by herself. Her shape from her scoliosis, her poor muscle tone from her Prader-Willi Syndrome, and her daintiest of dainty and infrequent coughs being too damn dainty and infrequent, are all complicating matters.

We're waiting for the strong antiobiotics to kick in. In 24 hours, if hands-on physio, breathing physio, and the meds don't shift the gunk, a decision may have to be made to do a chest drain.

"I feel grotty, Mum," my dark circle-eyed girl told me. "I just want to get better."

In that brain-bamboozling way she has of random conversation shifts, she then said: "When you went to get our things earlier you missed a lion." I looked at her in alarm, thinking she had suddenly started hallucinating. "I think Daddy would have said if there had been a lion on the hospital ward, sweetheart," I said, patronisingly. "There was a lion," she insisted, and of course I found out later she was right. A person in a furry suit kind of lion. One of those 'supposed to be charming but actually quite creepy' type of things you see visiting children's hospital wards. Like clowns. Or One Direction. (I'm not going to even mention Jimmy Savile).

Another sofa-bed vigil is about to start. I think there may be less vigil-ing in my vigilance tonight because I'm cream-crackered. Not as cream-crackered as my pale and poorly girl, though. She's puffed her way through her breathing exercises today, with great difficulty, and she's all puffed out.

I just want her to get better, too.

Can't be doing with mobile phone-posting a video tonight, so knock yourselves out by Spotifying Puff The Magic Dragon. Or something by Puff Daddy, I suppose. But the dragon one will be better.

Rebecca

My skin is still tingling from the contrasting emotions that surged through me when reading this story.

It’s about a 20-year-old girl called Rebecca Ling, who has Prader-Willi Syndrome.

She’s been chosen as one of the 8,000 people who will carry the Olympic torch as it travels around the country in the lead-up to London 2012.

This is a brilliant thing.

But the story wasn’t an easy read. As my eyes scanned it, I pulled up short, the adrenalin rushing to my head, not realising what it was I was feeling. And then I recognised it: fear.

Rebecca was left paralysed six years ago, after an operation to correct her scoliosis went wrong. My daughter had the same operation when she was 10. And the doctors told us that paralysis was a risk, because they were working so close to the spinal cord. We were lucky that everything went smoothly, but just reading about this outcome transports me back to the hospital waiting room and the moment her consultant reappeared after an eight hour wait. There was that split second - a miniscule amount of time - before he smiled and told us she was OK. 

Rachel’s parents didn’t get that message. 

“Thank God that didn’t happen to my girl; thank God that didn’t happen to us...” I thought. And then the blood rushed back into my face, as my fear turned to shame. What was I thinking? As I leapt to conclusions about the ‘quality’ of Rebecca’s life, was I doing what I hate other people doing? Pitying and condescending a person who I had never met and had no right to have an opinion on or even begin to understand how they live and enjoy their life?

The most telling part of the article for me was the following three lines:

The Chelmsford College student said: “I’m very excited to be taking part.

“When I found out I went straight on Facebook and told all my friends.

“I think it’s going to be fun.”

And that’s when the tears came. And a big smile. Rebecca was going to have an amazing experience, and her first thought was to update her status.

That wonderful everyday banality is the flame that burns brightest for me. I’ll cheer you all the way, Rebecca.

Video is Laura Viers - July Flame

Dam

It was stormy here last night.

I wrote about my daughter’s ‘waves’ previously. They’re when tears come flooding out in a sudden rush, as if she’s suddenly been caught by onrushing water at high tide.

She’d not had one for while. Last night, the dam burst and she had seven. Nothing could console her. It was the middle of the night before she finally fell asleep. All this woke her brother - who’d taken some serious coralling to get to bed - and who seemed to think it was morning already.

I don’t always find out what causes a wave. But at 1.45am, when the tears finally dried up and the tide went out, my girl whispered something to me.

“I don’t know what plate to have at Nanny’s tomorrow.”

So it seems that the emotional meltdown may have been caused by this: My daughter has a treasured Tracy Beaker plate, which she eats all her meals off. For Easter I bought her a Hello Kitty plate, which is now her new favourite. Or so I thought. It looks like she’s torn between which she likes best. And last night, that was enough. Her sleepy little brain got stuck on a choice, and it caused a crisis.

“Is that what the matter is?” I asked her, sitting on the edge of her bed, our conversation lit by the flickering light from her fish tank.

She nodded.

“Shall we take both plates with us, and then you can choose when you’re there?”

She nodded again. And rolled over and went to sleep.

Video is Lee Dorsey - Tears, Tears And More Tears (thanks to @twrafferty for introducing me to this track)

Inigo

There's a scene near the end of the splendid fairytale film romp The Princess Bride where a swashbuckling character bent on revenge repeats his catchphrase over and over again.

The ridiculously-named actor Mandy Patinkin confronts Christopher Guest, who plays The Six Fingered Man - the villain he has been searching for his whole life.

"Hello, my name is Inigo Montoya. You killed my father. Prepare to die!" Mandy growls, in a cod Spanish accent. "Hello, my name is Inigo Montoya. You killed my father. Prepare to die! Hello, my name is Inigo Montoya. You killed my father. Prepare to die!"

"Stop saying that!" pleads his over-generously-digited foe.

It was at this point yesterday, when we were watching the film for the what must have been the 50th time, my daughter turned to me, shaking her head and smiling ruefully.

"God, he doesn't half go on! He's said it once, he really doesn't need to say it again and again, does he?" she said, looking at me askew.

Now my girl is a world-beater at repeating particular phrases ad infinitum. And she knows this, because even as she does it she'll occasionally interrupt the flow to tell herself she doesn't need to keep saying what she's saying. And then she keeps saying it.

When I giggled, she giggled back, and started parroting the Inigo Montoya phrase.

Her brother and her dad were hiding from dragons under a blanket in the little lad's bedroom. So we crept upstairs, and whipped the blanket off. The slightly startled but amused pair listened dutifully as she performed the line. More than once, obviously.

Small pleasures.

Recorded on my phone: My name is Inigo Montoya...

listen to ‘My Name Is Inigo Montoya’ on Audioboo

Video is The Princess Bride - My Name Is...

Song is Gillian Welch with David Rawlings - No-one Knows My Name

Magazine

Sometimes my life resembles a sketch show. It’s a series of skits, complete with bad hair and repeated catchphrases.

Yesterday, we popped into the newsagent's to buy a magazine for my daughter and her little brother. The toddlinator spotted a Spiderman comic which came with a free gun, so that was him sorted. (I know, I know. It’s little wonder he’s a two foot tall ball of violence).

My daughter, however, struggled. When faced with too many choices, her brain starts to race, and she begins to panic. 

“They haven’t got a Hello Kitty one, Mum,” she said, her voice tinged with alarm.

“That’s OK,” I said, in my best calm and measured tone. “If there’s nothing you want, then I can give you your money for your money box and you can put it towards something nice.”

She considered this, turned away, and started rifling through the rack again.

I repeated my offer a couple of times, and I could see she was torn. She was shooting sidelong glances at her brother’s magazine, so I patiently explained that I would be giving her and her brother exactly the same amount of money, and that it was just that she would be saving it and he would be spending it.

Time passed. I give her a deadline. The deadline passed. My boy was getting itchy feet.

“Choose one now if you really want one, but don’t get one for the sake of it !” I warned. “Are you sure that’s the one you want?

She nodded, grabbed an I Love Ponies magazind (£3.99, for Shergar’s sake!) so we headed to the till. 

I checked again: “Are you absolutely sure that’s the one you want?” She nodded, solemnly. "I want that one."

We paid, left the shop, and walked back to the car. Just as she was about to get in, my girl looked at me, looked at her magazine, and declared: “Don’t like it.”

Lou and Andy, from Little Britain. That’s who we are. 

Video is an excerpt from Little Britain

Video is Lou Reed - Andy's Chest

Urge

My daughter is now a whistle-free zone.

You may recall that she has had a Roger Whittaker Simulator strung round her neck for years. (See previous post Whistle).

People with Prader-Willi Syndrome can be prone to skin-picking, but in my little girl's case, fiddling with and feeling the string and the metal clasp of the whistle with her fingers seemed to negate the urge to pick.

But her teacher recently suggested to her that she might be able to get on with her schoolwork much faster if she put the whistle away for a while. And because this appealed to my girl's desire to 'keep up' and achieve tasks she's been set, she tried it. A short while later, she decided herself that she didn't need the whistle at break times or lunchtime, either. And now she's ditched the thing at home, too.

I wondered if self-imposed cold turkey might have some side-effects, and it has. The whistle-fiddling has been replaced by a nervous tap, tap tapping of her forefinger on her teeth, followed by three strokes of her finger on her tongue. The number of taps vary, but it's always three touches on the tongue.

Interestingly, she seems to be aware of this new habit, and is trying to talk herself out of it. I mean this literally: she's having regular loud and intense debates, answering back in a two-way conversation with herself, about how she needs to stop the tapping because 'big girls' don't do that.

So I'm waiting to see what'll happen if she does manage to persuade herself to stop.

Because if she does squash the urge, I've got a feeling it'll pop up somewhere else.

Song is Syl Johnson - I Feel An Urge

Ivan

I think this is a courageous, honest, sensitively-handled, angry, and righteous (in the best sense of the word) blog post about an unmentionable subject that needs to be mentioned.

Do you?

We need to talk about Ivan

(from sturdyblog)

Video is Crazy Horse - I Don't Want To Talk About It

Days

I’ve just dropped my daughter off at school.

I gave her a big hug and a kiss, and watched her disappear inside, wearing her waterproof mac, trackie bottoms and trainers, and carrying a luminous pink bag that weighs the same as a small hippopotamus.

It’s packed with towels and spare trainers and T-shirts and jumpers and a washbag and a torch and a spangly dress and a swimming cozzie and Bully the cuddly, soft toy bull. (Not a Bully from Jim Bowen’s Bullseye show, although if it was one of those that would be super, smashing, great).

My daughter and her classmates are piling into a minibus and heading to deepest darkest East Sussex, for three days and two nights.

It’s a PGL multi-activity holiday, and they’ll be taking part in all sorts of exciting stuff from fencing and archery to climbing and disco dancing. (I wrote about it in my previous post Intrepid).

It’s the kind of thing kids all over the country do.

It’s the kind of thing my girl does, too.

I never thought she’d be able to take part in something like this. I used to wonder whether she’d ever walk or talk. 

Days like these are ordinary and extraordinary. 

They're not perfect, though. There's always a tiny improvement that could be made. Today, for example, could have been truly sublime. If only I'd thought to hide my toddler in the luggage rack.

Video is The Kinks - Days

Married

My daughter went on a walk with her school.

They were looking at local buildings as part of learning about local history, and she told me that they visited the church.

“I’d like to get married in St Andrew’s Church, Mum,” she said.

“I’m quite keen to get married.”

I can’t adequately express the tangled knot of emotions this tugged tight in me.

I just can’t.

Video is Feist - The Circle Married The Line

Sibling

Today's blog is special guest post by Rhona Martin:

What is it like being the sibling of someone with a disability?  I'd never been asked this until I was invited to contribute to this blog.  I wonder if other siblings of disabled people are asked how they really feel?  I hope so.  For me it's a loaded question, because it's probably like any brother/sister relationship – laughs, arguments but also extra responsibilities and considerations.

No satisfactory diagnosis was ever offered; back in the mid-1970s, when my brother was three, various explanations like Cerebral Palsy, chromosomal abnormalities and oxygen starvation during birth were bandied about.  Whatever it was, it caused certain areas of his brain to develop slowly, while other areas flourished normally.  He didn't walk until he was four and his speech was way behind his peers, but he got there – and a more determined person you couldn’t meet. Relentless obstinacy has been his saviour, enabling him to attend the same school as me until he was nine, followed by a specialist school until adulthood.

Fortunately his health has always been robust, but a couple of years ago, after months of hassle from kids in his town, he became very depressed and self-conscious about his looks, so he was prescribed anti-depressants.  Naturally, we reassured him he is as good-looking as the rest of his family!  He was delighted!  He is a vibrant, funny person - full of unconditional love and compassion, with an enormous love of words and fascination with music. Unfortunately his condition has prevented him fully expressing these enthusiasms.  Even as a 37-year-old he can barely read or write, despite our efforts to help him. His balance and co-ordination are impaired but he has the mind of a bright but very giddy, imaginative seven-year-old. This creates plenty laughs but has also left me and our Dad weeping with frustration and open-mouthed in disbelief.

We lost our Mum to cancer when I was 14 and my brother was 11. So I instinctively assumed a new and confusing role of a sister with maternal responsibilities.  It was easy for me to love and care for him and it distracted me from my profound grief, but at times it has been a bitter-sweet love.  I was angry and sometimes embarrassed because he was different, I felt I had to put him first, to defend and protect him from ignorance and prejudice.  Rather than having the same carefree self-absorbed outlook of other teenagers, I had other responsibilities and I resented it. Nevertheless it has influenced my outlook, helped create an open-hearted, caring person who is acutely aware of the feelings, emotions and needs of others. 

He now has an independent, happy, fulfilling life in his own home, in a nearby town with the aid of a fantastic charity called Enable Scotland who provide live-in carers. He has a part-time job in a recycling centre, an enviable social circle and doesn't need nor expect me to be on standby to save the day.  So now it's my time to look after me, be who I'm supposed to be and stop feeling trapped by circumstance, and that’s what I'm doing, just rather later than I anticipated.  I am concerned for his future though - how the impending welfare cuts will affect his quality of life or what will happen when I'm the only member of the family left.  The worrying has stopped but I'll never stop caring.

Video is The Cocteau Twins - Love's Easy Tears

Thank you Rhona. I know this was a difficult piece to write, but you've done it beautifully.