Numbers

I found this in a box in my attic yesterday.

It’s a little black book. No, not that sort of little black book. 

This dusty-smelling tome is from another life. On each page are rows of numbers, painstakingly recorded and incongruously neat.

This little black book is my daughter’s feeding record from when she was just a few weeks old, which I started to keep after her hospital feeding tube had been removed. 

Each day, as I struggled to get her to drink her milk from a bottle, I noted down the amount she managed at each feed. At the bottom of each page is the total, plus information on what times of day she was ‘active’. (As a weak and floppy baby with Prader-Willi Syndrome, ‘active’ is a relative term).

Leafing through the pages now, I can remember my whole world revolving around these numbers. They became a stark measure of my parenting skills. I was carrying out an Ofsted on myself as a mother and provider of sustenance. And a lot of the time I felt like I was 'failing'.

The book finishes when she was four months old, when bottle was swapped for spoon and milk for food. This was when our frail baby began to find things easier. And when I first felt that maybe I wasn't going to be put on 'special measures'. I might be up to the job, after all.


Of course, nowadays, there'd be an app for this.

Video is Stephen Malkmus - Black Book

Gillian

I really should get a T-shirt.

When I went to the supermarket when my daughter was little, I couldn’t take her with me. Rows and rows of food lined up, and her being hungry all the time. Not a good mix, really.

Oddly enough, as she’s got older, it’s not so bad. Although food is still her all-consuming passion, now she can tell me what she wants, so there's less screaming and more choosing. 

She’ll grab something off the shelf, pore over the label, and hold it up, shouting triumphantly, “I can have this, it’s only 65 calories, Mummy!”

You can just imagine the amount of evil looks this kind of phrase elicits from passing shoppers. I call it ‘the Gillian McKeith’. Their eyes narrow, giving chubby mum a disdainful look from head to toe. 

I know what they’re thinking. “That awful mother has got her poor little girl on a diet!” Then they probably even want to look at my poo, to see what rubbish I’ve been eating.

So I really should get a T-shirt.

Maybe this:

Nah. This is better:

Perhaps Bo Diddley put it more politely:

Video is Bo Diddley - You Can't Judge A Book By Looking At The Cover

Camp

Today is a good day.

Thousands of people are staggering, blinking in the morning light, out of their temporary canvas and mud shelters at Glastonbury. 

Somewhere in a field in Buckinghamshire, my daughter is also unzipping a tent and crawling outside, her hair sticking up at a ridiculous angle, a toothbrush in her hand, and a smile on her face. The similarities end there, though. She’s camping with the Guides, so there’s not so many Class A drugs involved, there’s only a minor risk of developing trenchfoot, Keith effing Allen won't turn up, and the toilets are a bit less stinky.

Back when she was diagnosed with Prader-Willi Syndrome, the future looked very bleak. I never dreamed I’d be able to say she was off on a camping trip.

Yes, there are a few things we have to organise that most other parents don’t: going through the menu beforehand to check the meals are suitably low-fat; getting one of the guiders to supervise her ablutions; and providing her own healthy snacks instead of the communal choccie biscuits.

But she’s there. With the other girls. Who will keep an eye on her and make allowances for her odd little ways, because they’re essentially good kids.

And I get a lie-in. Result.

Video is Pulp - Common People. Glastonbury gold.

Positive

When you have a child with a disability, you learn pretty early on how to accentuate the positive.

A minor victory can keep your fighting spirits fuelled.

My daughter does have some milestones she’ll never reach. She’ll never get married, she’ll never be a mum, she’ll never be able to live independently.

But she’s managed a whole heap of stuff.

Feeding, sitting, rolling, standing, walking, dancing, signing, talking, grinning, laughing, joking, loving, discovering, hugging, sharing, reading, writing, chatting, singing, playing, Nintendo-ing, selective hearing, and answering back.

Each of these achievements took time. The longer we had to wait, and the more work they involved, the more they meant. We took nothing for granted.

When you have a child with a disability, you learn pretty early on how to accentuate the positive.

Also, you get free loft insulation, you can jump the queues at Eurodisney, and parking’s a doddle.

Video is Aretha Franklin - Ac-Cent-Tchu-Ate The Positive

Cast

Every nine months, we had to get my daughter plaster-casted. Wrapped up in warm, Plaster-of-Paris-coated bandages, like a miniature Egyptian mummy.

The problem was that when she finally gained the strength to sit up, she was lop-sided. Scoliosis (curvature of the spine) was diagnosed, and like a sagging bridge, she needed some sort of scaffolding.

This came in the form of a body brace. A plastic strait-jacket which she had to wear day and night. As she grew, new ones were made to fit the exact contours of her wonky torso using moulds made at regular plaster-casting sessions. We used to return from the hospital with white flecks on our clothes and in our hair, like the oddest painter and decorator team you’d ever seen.

Later, when she learned to stand, she had to get up like a baby giraffe, spreading her legs out wide to get her balance, as there was no ‘give’ in her top half.

We could only hug her properly for half an hour around bathtime when we were allowed to take off the brace. My husband and I would fight for cuddles like drinkers jostling their way to a free bar at a wedding, knowing the money would soon run out.

We used to banish night-time fears of monsters by making up a story of how a big, bad wolf crept into her room and tried to bite her, but slunk away, after hurting his teeth on her cast. Mr Wolf told all his monster friends not to try to eat up the girl with the indestructable superhero armour.

She doesn’t have to wear it now. When she was first free of it, she felt vulnerable. And I wished I’d not told her that bleedin’ wolf story.

The video below is 'Cast - Alright'. I resisted the terrible urge to post something by Phil Collins from No Jacket Required. No, no, there's no need to thank me.

Grandad

“She’ll be OK. I don’t think she’s got it that badly.”

My dad displayed all of his years of medical knowledge trying to convince me, and himself, that his granddaughter’s life wasn’t really going to be affected by Prader-Willi Syndrome.  When I say medical knowledge, I actually mean none. This is a man who has to be at death's door to drag himself to the doctors. If he chopped his arm off in a threshing accident, he’d probably try to use superglue and string to fix it.

But he had to learn that when someone is obsessed with food and never physically feels full up, you can’t do the following:

• Wander to the kitchen cupboards every now and again, and saunter around the house grazing on liquorice sticks.
• Mention the words breakfast, dinner, tea or snack when it isn’t breakfast, dinner, tea or snack-time.
• Share a piece of your chocolate bar, using the phrase “Oh, go on, a little bit won’t hurt.”

What you can do is this:

• Keep a few bits of pasta on your plate, ready to replace any your granddaughter drops on the floor, thus avoiding a Big Drama.
• Have a box of raisins in your pocket, to dish out as an alternative in case you’re out somewhere and sweets or cake are offered by the well-meaning uninformed.
• Allow your granddaughter to take great delight in plucking your chest hairs, however painful (see picture, top of page).

It took a while for him to accept and understand that where PWS is concerned everyone has to change their behaviour to make life easier. But he did, and I love him for it.

Happy Father’s Day, Dad.

Video is Ian Dury & The Blockheads - My Old Man

Pool

Twice a week, I used to get in a hot tub with a load of strangers.

That’s not quite as dubious as it sounds. Strictly speaking, it was a hydrotherapy pool. The water temperature was so warm that, with a little patience, you could have poached an egg in there.

My floppy-limbed daughter needed her muscles strengthening. And the weightlessness afforded by floating in water meant exercises were less effort. So I took the plunge and swished about in the hospital pool with around half a dozen other mums and dads and their children.

It was a revelation. I’m not talking about the hydrotherapy itself. Nor the sight of me in a cozzy. What boggled my mind was the experience of being up close and personal with other disabled kids, with problems that made my daughter’s condition seem like a walk in the park.

There was one girl in particular. She could just about move her eyebrows, and that was it. The rest of her was paralysed. During that first session, I kept stealing glances at her. I thought her life and her parents’ life must be abject. No movement. No response. No feedback. 

And yet after a few weeks, I could tell whether she was tired, cross, or happy. And I started to realise that if a stranger in a pool could pick up these signs in just a couple of half-hour sessions a week, despite initial appearances, she and her mum must have incredible rapport.

And then came the real revelation. The Eastenders' doof doof moment: Her mum wasn’t her mum. She was a foster carer, and she was in the process of adopting her. Voluntarily taking on a child with such huge problems. 

I still think of them. On very bad days, and very good days. For me, they epitomise the worst that life can throw at you and the best it can throw back.

Eddi Reader - The Swimming Song

Video is I Am Kloot - The Same Deep Water As Me