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

Alarm

There aren't too many new parents who have to set their alarm clocks to wake up their baby. And it's rare you'll find someone who'll try any trick going to keep the little bugger awake at 2am. But that's what we had to do.

My baby daughter couldn’t cry. Having Prader-Willi Syndrome meant she was hypotonic. Although this sounds like the name of a new sports drink, it just means that she had very weak muscle tone. So she couldn’t cry. 

She also couldn’t suck, so she had to be tube-fed for the first month of her life. Imagine sticking a straw up your nose and squirting your cup of tea through it. A bit like that.

When she could feed by herself, it took ages, I mean AGES, to get just a few millilitres of milk down her, despite trying every special bottle and teat known to man. The effort required caused her to fall asleep, exhausted, before she’d finished.

So every four hours, I’d set the alarm, stagger sleepily into her room, pick her up, switch all the lights on, dance about, take her sleepsuit off and put it back on again, do Scooby-Doo impressions, tickle her, stick on some music, pogo, chat, wave, gurn, bounce, jiggle, jog and do the twist.

All this to wake her, get her feeding, and keep her up long enough to get the sustenance she needed. All this for a child who we would later try to stop eating too much.

Video is The Everly Brothers - Wake Up Little Susie

Her

I’m that woman. Her. The one I used to see in the shopping centre, with her arm around the man/boy with Down’s Syndrome. Wiping the nose of a woman/girl who’s taller then her. Or calming down a teenager/child having a tantrum they should have grown out of years ago. The one I used to avoid eye contact with, then panic and smile at. The one who I was relieved to scuttle past, because then I didn’t have to search frantically for the right emotion to display, when all the wrong ones were jostling for position in my head.

I never expected to be that woman. Her. But I am.

Because I didn’t realise she might have spent years wishing the day would come when her daughter had the strength to stand and walk along with her. That it didn't matter if other people stared, whispered, or veered away at the sight of someone who had something ‘wrong’ with them. Because holding hands with her girl was just about the best feeling there was. And that every single time they walked step by step together, the pride would swell and cocoon her with its warmth.

I never expected to be that woman. Her. But I am. And it’s bloody marvellous.

Video is Katrina & The Waves - Walking On Sunshine

Willy

The moment had arrived. The invitation to join the people in white coats in that room.

You can spot that room easily. It’s just as drab and grey as all the other rooms, except it has cheap, flowery curtains and a box of man-size tissues on the table (with the rest of the multi-pack stacked in the corner). The emotional forecast in that room is for torrential tears and persistent weeping, with the chance of heavy sobs. Think Butlins.

The three and half weeks of waiting were over. The blood tests and investigations had finally produced a result: our daughter had a very rare chromosome disorder. We were given a printout of a website page, telling us in black and white what this meant. I felt like I'd been punched in the chest. The name of our daughter’s problem was Prader-Willi Syndrome (named after two of the Austrian doctors who discovered it).

At that time, most people knew me by my old nickname, which came about by someone shortening my maiden name, and adding ‘y’ on the end. Making me ‘Willy’.

So my brand new baby girl had just been diagnosed with a life-long, potentially life-threatening genetic disorder with a stupid-sounding name that matched my stupid-sounding name. Because things obviously weren’t quite surreal enough.

Incidentally, many people in this world still call me Willy. Including my husband, who - when he shouts out loudly to me in the aisle at Tesco - resembles nothing more than a Tourettes sufferer, mid tic.


Rufus Thomas - Willy Nilly

Lactivism

At first, I didn’t realise they were working together. They were so different. One was aggressive and contemptuous; the other was tender and concerned. “Right, come on now, you need to start doing this properly. You’re giving up too easily,” the first one snapped. When she left the room I gave the other a pleading look. She raised one eyebrow, sympathetically. “Please,” I said. “Can’t you help?” Finally, she nodded. “I’ll be back in a minute.”

It felt like an interrogation room scene in a film. I was under the care of Good Breast Cop, Bad Breast Cop. These were the nurses I was turning to for help after yet another attempt to breastfeed my new baby had failed.

Soon, my paediatrician realised my daughter’s floppiness, her inability to suck, and the blueish tinge around the mouth and to her hands and feet, were signs that something was seriously wrong. We were whisked away. To the Special Care Baby Unit. Bad Breast Cop couldn’t look me in the eye.

(Video clip: Good cop, bad cop scene from L.A. Confidential)

High

You've got to hand it to the NHS: they give you good drugs.
"How tall are you?" the anaesthetist asked, as I was about to be taken into surgery. I presumed he was checking the dose for the epidural. "5ft 5in," I told him, starting to feel a little spaced out from the injection. One of the nurses pumped the foot pedal to raise my trolley bed a little lower. I frowned, concentrating hard. "No, wait, I'm only about 5ft now."

My husband arrived wearing scrubs. "You're not effing doing it," I told him.

The consultant about to perform the emergency caesarian looked like Geoffrey Palmer, with those puffed-out, pompous jowls. There were about a dozen other people in the theatre, all scurrying about at his command. He wasn't happy. "This baby is breach. You must have seen your consultant last week. They really should have picked this up," he said. "Who was it?"
"You," I replied, causing a mass outbreak of coughing from behind his junior colleagues' masks.

I was shielded from the gory details by a green curtain. The top of me was shaken around by violent rummaging I couldn't feel. A cry. Then my husband was handed something. He passed it to me. A slimy, sleepy, beautiful wrinkled girl.

Perfect.

For a day, that's what we thought.

"Eight miles high, and when you touch down
You'll find that it's stranger than known
Signs in the street that say where you're going
Are somewhere just being their own"
(The Byrds - Eight Miles High)

Arrival

The registrar gave me an odd look. I thought about it when I walked out of her office, and went to the pub with my workmates, who didn't know what to say to me. That was OK, because they were willing enough to ply me with drink. I got a lift back to the hospital again. It was only then I realised that under my coat, which now had a freshly-printed birth certificate in one pocket, I was still wearing my pyjamas. You'd have thought someone would have mentioned it. 

One in every 25,000 they said. A rare occurence. A whole decade would go by in their maternity ward before another one would arrive. When they told me that it made it worse. Nothing had gone to plan. Everything had gone wrong. And yet. She was beautiful. I was raging and terrified. But she was beautiful.

This song transports me back there. Wires, by Athlete, written by the lead singer about the premature birth of his daughter:

"Running, down corridors, through automatic doors
Got to get to you, got to see this through,
I see hope is here, in a plastic box,
I've seen Christmas lights, reflect in your eyes,
Down corridors, through automatic doors
Got to get to you, got to see this through."

I wish I had known then what I know now.  It would have made those long, dark days and nights easier to bear.

"First night of your life, curled up on your own,
Looking at you now, you would never know.
I see it in your eyes, I see it in your eyes,
You'll be all right."

And she is, you know. All right.

Oh, and there's one other song, too, that I'll forever oddly associate with this time. Alone in the tiny room in the middle of the Special Care Baby Unit, attached to the noisy, industrial Black & Decker-sized breast pump, I had to hum something to keep myself amused: 

Video is Madonna - Express Yourself