Expecting

Stripy is pregnant.
I think Bieber is the father.
Apparently, it's likely they will eat their young.
I'll keep you posted.

(If none of this makes sense, you might want to read Tank).

Video is Shane McGowan & The Popes - Her Father Didn't Like Me Anyway

Solid

If you know your baby has a medical condition which means you can’t give them too much food, you just wouldn’t - would you?

It was an anathema to me. How could anyone ignore all the advice and allow a child with Prader-Willi Syndrome to have a diet that wasn’t healthy enough, or restricted enough? Especially as a baby. I mean, come on, who’s in charge here?

Looking back, I can remember my certainty. These people were wrong. I wasn't like them. I vowed not make the same mistake. 

And then came the moment that I realised how easily it could happen.

When my daughter was a baby she couldn’t feed. Initially, in hospital, we had to use a nose-tube. Then came the long, long days and nights of bottle-feeding and trying to get the spindly-legged scrap of a girl to drink more than a few millilitres of milk. (I wrote about it in an earlier post - Alarm).

At four months old, we tried her on solid food for the first time. The usual home-made vegetable or fruit purees you spend ages making as first-time mum, and which you are always slightly disappointed by when they all turn out to look like vomit. We propped up her floppy body at an appropriate angle. We loaded up her tiny plastic spoon with squidge and got shovelling.

She loved it. It was so much easier for her to eat from the spoon than to suck from the bottle. She somehow ended up with puree up her nose, in her ears, and even on her feet, but it was the first ‘feed’ time ever that had been a pleasure and not a struggle. 

For the very first time I felt I had been able to provide her with the sustenance she needed, and it was a good, good feeling. 

This was when I knew. Because it had been so hard up to that point, because this new method of food delivery looked like it was going to be a barnstorming success, and because it felt so nurturing, it was incredibly tempting to give her some more. 

Video is Squeeze - Tempted

Walk

My daughter really wasn’t keen on walking home from school yesterday.

It’s only half a mile.

We’ve been having trouble with her managing the walk to and from school, particularly on a day when she does PE or walks to the other school site, which is a little distance away.

She gets tired easily. So we sometimes drive there and walk back, and sometimes - on an extra busy day for her - drive both ways. If anybody dares to judge me as being a lazy mum clogging up the road in my 4x4, then I’ll fight them. (I am pretty lazy, so I'll give them that, but I don’t have a 4x4. And this is NOT about me, so they can butt out).

I thought it was going to be a problem when her lip started to quiver as we told her we’d be walking home with her brother, who needed to burn off some energy and was doing this by zipping around on his scooter knocking down small children and pensioners.

But her dad stepped in.

“It’s not far. We’ll make a list in our head of what we’ll see on the way and tick it off. OK?”

She looked unsure. He carried on, manfully. I looked sceptical, womanfully.

“First, there’s the Red Lion pub. 

Then there’s the crossing, where the lollipop lady is.

Then there’s the baptist church. 

Then there’s the garage. 

Then there’s the house with the white lions outside. 

And then there’s our road, and our house. OK?”

She nodded. We started walking. We reached each landmark. She started looking out for the next one, and getting excited when she saw it. We arrived home, a trail of scooter track-imprinted bodies lying prone in our wake, and my girl with weary feet but a fresh smile.

Her dad. He’s good at this, you know.

Video is Tom Waits - The Long Way Home

Boxes

My daughter ticks boxes.

In those bleak, early days when she diagnosed with Prader-Willi Syndrome, there was an element of relief in finally knowing what was wrong with her and being given a name for it.

But I didn't want her to become the label. My daughter is my daughter. She’s herself. She happens to have PWS, which plays a part in moulding her personality, but that’s all it is: a part.

And yet now, years down the line, I've learned a label can sometimes be useful. When it comes to Statements of Special Educational Needs, and forms for Disability Living Allowance and all the reams and reams of paperwork I find myself filling in, I console myself with this thought.

Because her behaviour and symptoms and characteristics and personality can be 'explained'. As individual as she is, as different as she is from another child with PWS, she fits the authorities' criteria. There is a name for what she has. It can be recorded in black and white. She can be categorised. And we can get down to the nitty gritty of working out the help and support she needs. It’s not always available, and sometimes we have a fight on our hands, but being able to tick those boxes gets us out of the starting blocks.

Video is Elbow - Jesus Is A Rochdale Girl. 

"And they found me full of myself
And bloody-minded will
And as yet a box to fill
And as yet a box to fill"

Tank

My daughter is finally the proud owner of a tropical aquarium, with four little beady-eyed fish swimming about in it.

Getting to this point has been a saga that would have tested the most patient soul.

The first one, delivered by courier, was smashed. The second one we cracked, by deciding to line it with gravel a little too haphazardly whilst under the influence of grape-juice.

The third and final one was set up, decorated with assorted Spongebob Squarepants characters, and placed on a bookshelf in our daughter’s room in time for her birthday, nearly seven weeks ago.

She was thrilled. We explained how we would have to dechlorinate any water and get it to the right temperature. We told her how we'd start off with just a a few hardy little fish, and get the bacteria going in the tank. (I had NO idea beforehand that it was so complicated. I’ve started wishing we’d gone for a gerbil).

Wide-eyed, our girl promised she would join in the rota for cleaning and changing filters. Three family members/mates promised a trip to the ‘fish shop’ to buy her some little, wiggly, finny friends.

And then we realised. In a few weeks we were about to get the entire house rewired. Which would involve floorboards coming up, and furniture moved away from walls. If we filled up her tank with the required 70 litres of water, we would never budge the bugger.

And so, we had to break the news to her. 

“You might have to wait a while before we can fill it up and get some fish, sweetheart,” I said, explaining the dilemma, before softening the blow with a hastily bought extra present (another Animal Hospital toy to add to her ever-expanding collection).

She took it on the chin. With barely a wobble of the lip, and astounding forebearance, she agreed that it was best to wait. This is the girl who collapses in a sobbing heap if you mistakenly give her diet yoghurt for lunch and low-fat custard for tea instead of the other way round.

So, she's waited. And waited. At last, this weekend, we stocked the beauty up with four danios - two zebra ones, a leopard one, and a golden one.

In order, they are: Stripy, Mist, Sabor (named after the leopard in Disney’s Tarzan), and, amusingly, Justin Bieber. Aptly, he’s a little git that seems to be irritating the others.

And no. I am NOT posting a Bieber song. I shall just laugh, evilly, to myself as I secretly look forward to the day when I will be flushing Justin Bieber down the toilet.

Video is Eddie And The Hot Rods - Fish 'n' Chips. Thanks to the lovely @Beezerr for recently introducing me to this track. 

Friend (Update)

My teenage daughter went round her mate’s house after school yesterday.

They did the normal stuff teenagers do: sneaked some Bacardi Breezers upstairs; talked about who they’d like to snog at the school disco; and popped out to Boots to nick some lipsticks.

Well, no. I'm kidding. They didn’t actually do any of these things. What they did was play with dollies for two hours.

Bethany, her new friend - in fact the first friend she has ever made herself - goes to the same special school as my daughter.

A month or so ago, she came round to tea at our house (see post Friend). Yesterday was the return trip. My girl had already packed her doll in a bag five days before, not wanting to forget it.

And I’d already done my preparation. I’d had The Food Conversation with Bethany’s mum, asking her to give my daughter the relatively healthy, quick and easy Fishfinger Special. (Fish Fingers, jacket potato and peas). I’d also packed a low-fat pudding in her school bag, and a low-calorie snack bar. 

With Prader-Willi Syndrome, field rations still have to be monitored from HQ, you see.

It wasn't exactly a late night. My girl was delivered back home just after 6.30pm. Probably equally as tired as a non-PWS teenager rolling in it at midnight after a cider-fuelled house party.

Tired and happy. Still dressed in her spotty socks, spotty leggings and spotty nightshirt she’d worn to school for Children In Need Day.

My child is in need of a lot of things. But last night was good. Because she wasn’t in need of a friend. 

Video is The Go Team - Friendship Update

Bottom

Getting my daughter outside has always been a struggle. She’d always rather be in the warm, reading a book.

Which is fine. But when your child has Prader-Willi Syndrome, you need to sneak in physical activities whenever you can. The trick is not to call it exercise, and to entice her out with a little mission, project, or reward.

So rather than just go for a walk, we’ll pop to the shop to buy a magazine. To encourage her to come out for some bending and stretching and fresh air, we’ll get her to grab a trowel and do a spot of gardening with her dad.

The latter is what’s happening in this picture.

You’ll just have to take my word for it that actual gardening is taking place. 

What it looks like, I'll admit, is a formation builders’ bum display. 

My daughter's little bottom often had an unintentional airing during the nine years she had to wear a body brace to support her back (see previous blog entry Cast). It's hidden under her cardi in this photo, but the bottom edge of the plastic moulded jacket always used to push the top of her trousers down. 

Dunno what my husband's excuse is.

Video is The Presidents Of The United States Of America - Peaches. 
I was going to go for Moon River, but when I searched You Tube I almost clicked on Westlife's version by mistake, and the near miss frightened me so much I had to lie down in a darkened room.

Tired

Tears. Aches and pains. Worry. Nerves. Frustration. Hormones. Tiredness.

It hasn’t been a good day. All of the above have been showcased by my daughter. And some of them by me, too. The need for full scale bucking bronco toddler-wrangling hasn't helped, either.

I’m too shattered to think of a funny line to insert here.

I’m not sure why I felt the need to share this. I don’t normally mention the run-of-the-mill difficult days. 

They happen. Quite often, like today, on the fourth day of my husband’s four day shift. 

He’s off from tomorrow. Reinforcements are on their way.

But like the lady says in the soul-soothing song below, this was one day I really could have done with my firecatcher, rainmaker, soothsayer, guardian, plate-spinner, peacemaker and liontamer.

Video is Charlie Dore - Liontamer

Cinderella

She’s been a camel. She’s been a fairy. With the aid of a bedsheet, a wire coathanger, and some tinsel, she’s been an angel on more than one occasion.

When she was at mainstream school, my daughter was always one of the chorus, and never the leading lady. 

Now she’s at special school, things are different.

Yesterday, she announced, out of the blue, that she was going to be in the school play, and that she had been cast as Cinderella.

“That’s brilliant. That’s the leading role! Well done, sweetheart. We'll all come to see you!” I told her.

It made me fondly reminisce about my time on the stage. Who could forget my triumph, aged 17, in my upper school’s version of Trojan Women, when I played Athene, Goddess of Virginity? (I remember one teacher remarking that it was “hardly ‘method’ acting” - a comment that would surely get them arrested nowadays).

I can’t wait to see my daughter in action. She might not remember all her lines. So bloody what?

At long last, she doesn’t have to stand at the back of the stage because she can’t quite keep up. It’s her turn in the spotlight. She shall go to the ball. And she deserves it.

Video is Syl Johnson - Star Bright, Star Lite. Thanks to the marvellous @twrafferty for introducing me to the music of Mr Johnson.

Strings

I went out last night, with some very old friends.

And we had an amazing chat - fuelled by alcohol, admittedly - and found out some things about eachother we never realised.

And it's struck me. How little we really know about other people's emotions.

I've revealed more on this blog than I ever have face to face with some of my closest friends. It's odd: I've always been able to share my feelings more readily by writing them down rather than speaking them out loud.

I have never talked properly to some of my loved ones about the despair I felt when my daughter was diagnosed with Prader-Willi Syndrome.

I held up a shield of bravado and got on with things and didn't complain.

It worked for me at the time. It was the only way for me to deal with the fact that my daughter had been born with a disorder that would not allow her to live a normal life. It still hurts me to my bones.

But putting up a front also meant I didn't necessarily share the good things. The joy I felt at other moments. The moments when things happened in my daughter's life that made me grin like a wide-mouthed frog. The ones that thrilled me to my bones.

But I get it now.

Life isn't fair. I know this. 

So. You can either sit there with a ball of twine, tying yourself up with knots of bitterness and bile.

Or you can fan out the strings of hope and possibility and chance and goodness and surprise and fun. And see what life picks up and tugs.

Video is Flight Of The Conchords - Hurt Feelings. 
Because if ever I'm feeling a bit down, this sorts me out by making me howl with laughter.

"I feel like a prize asshole 

No-one ever mentions my casserole

Could have said something nice about my profiteroles"

Badge

She walked out of school with a shy, little swagger, her coat unzipped, not done up tightly as usual.

She peered up at me through her fringe (I must get that cut) and over the top of her glasses, which were perched precariously on the end of her nose (I must get those frames tightened).

She seemed to be sticking out her chest.

When I looked down, I realised it wasn't just pride in her "teenage boobs" (God, I wish I still had "teenage boobs"). Pinned smartly to her school jumper was a bright, new, badge, emblazoned with the legend: "School Council".

Yes, my daughter has finally reached High Office.

I daren't ask her her policies. I can guess them, anyway:

• The summary execution of anyone found stealing from school packed lunches, specifically hers
• The abolition of PE
• Hard jail-time for parents who forget to pack a snack for morning break
• NO DEVIATION FROM THE SCHOOL TIMETABLE. EVER
  

Apparently, she's joint student councillor for her class, along with Kieran. (There are five pupils in total in her special school form). It's coalition politics. This should run smoothly, then.

She told me she has to wear the badge at all times and I must never ever forget to take it off before I wash her uniform (oh please, somebody, help me).

I told her I was very proud of her. And I really am.

This might seem like a small, relatively unimportant achievement. But my daughter's self-confidence is a wall that can crumble. If this fills just a few cracks with mortar, it's got my vote.

Video is the trailer for the film 'Election'

Video is Easy Star All-Stars - Electioneering

Grind

Some things about Prader-Willi can grind you down. Sometimes it can be one little thing. Something you thought was sorted but turns out not to be.

Popping its nasty little head up over the horizon like a mangy meerkat this week was something grinding. In both senses of the word. 

We went to a new dentist, and she chatted away to my daughter, keeping her engaged, and telling her how well she’d been cleaning her teeth. All good.

But of course, I hadn’t warned our friendly tooth mechanic not to mention the g-word. ‘“There might be evidence of a little grinding, and we just need to keep an eye on it,” she said.

A klaxon sounded in my head. You see, my daughter is quite obsessed with this subject. She used to grind her baby teeth noisily and constantly, until the top set were worn right down (see picture).

Now she's older, she's got a nice set of pearly whites. When the adult teeth came through, she managed, as suddenly as she started, to stop mashing those jaws together. Gone was the clacking and grinding. I’d like to say it was more peaceful, but my girl managed to replace the actual grinding with talking, endessly, about how happy she was that she’d stopped doing it. Which was almost as annoying.

So then it came.  A wave.  In the corner of the examining room, where my daughter sat, as she waited for me to complete the ritual humiliation of being told to floss more.  Her shoulders shook and she sobbed, much to the concern of the dentist and her nurse. I got up and hugged my stricken girl until it passed.

“I don’t grind my teeth anymore,” she muttered, still sniffing. I whispered a brief explanation to the dentist, who told her that she wasn’t in trouble, her teeth weren’t going to fall out, and she was still the Number One Cleaner of Teeth In Chief.

So the crisis was averted. At least I thought it was. And then my non-clacking, non-grinding, toothsome daughter spent the next three days asking me if I was happy she doesn’t grind her teeth like she used to. Over and over again.

What’s that noise? What is it? Oh yes, that would be me. Gnashing my teeth together.

Video Is Grinderman - When My Love Comes Down

Cinnamon

It's been a manic week. Working from home is all well and good - except when you're having your house rewired, I have discovered.

Me and my Mac are covered in a thin layer of dust and a large aura of frazzle.

Martin, the sparky, has had an interesting taste of our family life, which seems mainly to have consisted of us shouting at the toddler.

My daughter - the one with Prader-Willi Syndrome, the one who likes her life to be nice and orderly, and the one who doesn't like change or a break in routine - has been remarkably calm about her floorboards being pulled up and hundreds of metres of wires being pulled here there and everywhere, like a melted game of Kerplunk!.

But tonight, in amongst the mayhem of getting work finished, getting tea done, and stopping the two-year-old either electrocuting himself or going caving inside our walls, my daughter did something that worried me.

I caught her wandering round the corner, looking mightily guilty, with her mouth clamped shut.

"What are you eating?" I asked. Panic crossed her face. "Nothing!" she insisted. (Or rather: "Om nom nom nothing!" as she plainly had a gobful of food).

After a short, sharp discussion, I was able to ascertain that she'd scooped a handful of cereal from the box in the high cupboard. Which may have involved her moving and using her brother's plastic step.

To be fair, she was tired, complaining of feeling a bit under the weather, and - of course - hungry. Having PWS means you're always hungry.  Which means you need your meals on time, every time. But today we just didn't play close enough attention to the clock. It was past the allotted noshing hour. So she helped herself to something.

It's unusual for our girl to sneak food. I saw her trying to hide what she'd done, and my heart plummeted. It could be a one-off. But it could be the start of something. We'll see.

By the way, they were Cinnamon Grahams, or Curiously Cinnamons, or whatever stupid name they've got now. Can't say as I blame her. They're bloody lovely.

Video is Teenage Fanclub - Sparky's Dream. (In honour of the electrician, of course).

Oisín

Last night, I listened to something quite extraordinary.

It's an audio documentary called Oisín's Story, which aired on Irish station RTE Radio 1 at the weekend. By Jiminy, it's good. It takes its subject and approaches it with care and respect. But it doesn't shy away from the tough stuff, too. It is crafted with sensitivity and love. It took my breath away.

Oisín, (pronounced O-Sheen) is an eight-year-old boy with Prader-Willi Syndrome. For 40 minutes, we are immersed in the love, fights, triumphs, fears, songs, tears and laughter of his family's life. I know this world. I live in this world with my family and my teenage daughter, who is missing the same bit of the same chromosome as Oisín. The documentary-makers have taken a perfect snapshot of our abnormal normality. It's charming, funny, scary and sad, but ultimately uplifting. It's by far the best thing I've ever heard, read or seen on PWS.

You can listen to Oisín's Story here.

Be warned. It might make your eyes leak a bit. But in a good way.

A huge thank you to @distracteddan for thinking of me and sending me the link to this.

Video is Crowded House - Distant Sun. Our world just collided with Oisín's and we got a sprinkling of dust from a distant sun.