What my disabled girl has taught me about life

Published in The Daily Mail (October 16th, 2011)

My wife came home the other day from a shopping trip to buy presents for my daughter’s birthday. It was obvious she was upset after struggling to find anything suitable. ‘This wasn’t how it was meant to be,’ she said. Even now, after all these years, it is the small, mundane things that make you stumble, which jolt dark thoughts buried deep in the recesses of your mind.

Tomorrow, our daughter celebrates her 18th birthday, that landmark moment when a child turns almost overnight into an adult. There will be a small party and presents. But she will not toast her big day in champagne, nor dance the night away with friends. She will not tear open her presents, blow out candles on her cake nor laugh as we recall happy childhood memories.

In 18 years our daughter has never spoken a sentence. She has never strolled by our side, ridden a bike, sat an exam, been on a date with a boyfriend or a sleep-over with girlfriends.

She suffers from a rare life-threatening condition that means she cannot walk or talk. She is blind, endures daily epileptic fits and needs round-the-clock care.
She relies on others for the most basic everyday tasks and must have someone with her all the time in case of emergency.

Our house is filled with carers and adapted with hoists and a lift. There are bottles of oxygen in the utility room and life-saving drugs in the kitchen. None of this was what we envisaged when she arrived one autumn evening in 1993.

But for all the tough times, for all her pain and our heartache, tomorrow we will celebrate her big day. Not just because she is a brave survivor who was never expected to make this momentous occasion.

We will celebrate because while the rest of the world sees only a tragically disabled child we see an affectionate, adorable and amazing daughter.

Yes, through a quirk of fate she has turned our lives upside down and made daily life at times unbearably difficult.

But set against that have been so many unexpected highs — the joy, the laughs, the warmth of her uncomplicated love and rich glimpses into a different reality of life. Without her, our own lives would have been so much easier but in truth, so much poorer.

So a very happy 18th birthday to Iona — our gorgeous girl who is a child no more.

There has been a moment in so many conversations over the past years when I know exactly what is coming next. My heart sinks: I am about to be asked about my children.

Not that I mind talking about them. On the contrary, I am deeply proud of them — my son at university and my daughter at home. And I am always happy to discuss any related issues of disability and my anger at the virtual apartheid into which so many people with disabilities are condemned in this country.

It is just I know how the conversation will go. The embarrassed pauses, the faltering questions, the fumbling sympathy, then the search for a way back to safer terrain. So do we plunge into this conversational chasm or do I attempt to glide on to another subject?

As my wife said, it was never meant to be like this.

Iona’s birth was normal. She seemed strong and healthy — and it was hard to see how life could have been better with good jobs, a decent house and two lovely kids.

I remember every detail of the day everything changed. It was five days before Christmas and my parents had come for lunch.

My father took a Polaroid picture, our infant daughter in a baby bouncer, our son sticking one leg in the air. Over subsequent months and years, I often looked at that fading family picture, wondering if it captured our last moment of unalloyed happiness.

We had been worried Iona’s sight was not functioning, while she had also been screaming endlessly. Then there were these mysterious little starts and jerks. So we rushed off to take her for tests with an ophthalmologist.

As the consultation at the clinic ended, her eyes rolled, her limbs went rigid and spasms racked her tiny body. The doctor stroked her hand, then in a gentle voice suggested we went to see a paediatrician. Immediately. We knew it was bad news.

The paediatrician examined Iona before asking a battery of questions about her and our own medical histories. Then he broke the news all parents dread: ‘I am afraid it appears that Iona is profoundly brain-damaged.’

Outside, pouring rain mingled with tears streaming down my face as I ran through crowds of festive shoppers.

The doctor’s words replayed over and over in my head, pounding my brain and reeking of despair, as I went to get the car to take my wife and daughter on the first of many trips to hospital.

It seemed life was over. These were the darkest of days, putting on a brave face and pretending all was fine while struggling with deep depression. We felt like zombies, deprived of sleep and tormented by fear of the future.

Psychologists believe parents in such instances suffer grief for the baby they have lost, before gradually coming to terms with the child they have.

Meanwhile, there were endless hospital appointments. She would vomit food and suffered diarrhoea, becoming desperately thin. The screaming went on for hours; one holiday in Cornwall when nine months old, it seemed to last a week without stop. Yet she looked so sweet, so defenceless, so like any other infant, when out in her buggy for a cliff-top walk.

Again and again, doctors asked the same questions about her birth and our backgrounds. There were scans, blood tests, strange machines glued to her head. But no obvious sign of brain damage. No clues what caused that distress.

To begin with, the lack of diagnosis drove us mad. We wanted a name, a condition to cling to and help us understand. Eventually, it stopped bothering us. There were many more immediate issues. We were discovering life becomes harder, not easier, as a profoundly disabled child gets older and bigger.

First and foremost was the fight to keep her alive and in best possible health. We sorted her diet ourselves, rejecting pressure from doctors to give her a gastrostomy (for an artificial feeding tube) since food is one of her pleasures.
But nothing stopped the wretched seizures that blight her life, which can leave her wiped out for hours and needing emergency medication.

Even now, having seen hundreds of them, they are torture to watch. They don’t just endanger her life — each one erodes her brain.

The other day, I was looking at pictures of her when younger. She looked so much brighter and perkier than she is today. Strangely, her hair was also curlier.

Life is like being on a roller-coaster. Long-planned social events are thrown at the last minute, while even a walk in the park can end with a seizure, surrounded by stares of strangers. There are months when her condition is comparatively stable, followed by weeks in steady decline.

Four times she slumped close to death. Once, slowly poisoned by high dosages of the drugs keeping her alive, she lay skeletally thin on her bed with her grey face glistening with cold sweat as we prepared to say goodbye. Thankfully, she pulled through.

But it is too easy to be mawkish, to see the disability rather than the child.
She is a warm and affectionate girl, often smiling when she hears us, perhaps stretching out her hand or nestling her head against our shoulder. She loves to be out in the wind, to go swimming, to hear music.There are many happy memories of that childhood that ends tomorrow.

Hearing her gurgle with joy when thrown in the air or watching her bobbing about in the sea on holiday, a big goofy grin on her face, provided similar paternal pleasures to watching my son score a goal on the football field.

We ensure she has as full a life as possible, doing things other teenagers do. She goes wheelchair dancing and has been to a club, to concerts, the theatre, even abseiling in Cornwall and to a music festival.

She is, of course, too big to throw around now, while carers need a hoist to help her into her wheelchair. She still has the same lop-sided smile, although she looks young for her age and doctors estimate she is nine inches smaller than she would have been without disabilities.

Somehow things seem more brightly coloured with her in the picture. A friend whose autistic child died told me it felt life was less ‘fizzy’; I knew exactly what he meant.

Behind our front door, it seems weirdly normal to have this unusual girl, sometimes manic, sometimes passive, but with a strange ability to bring joy to people who see her for what she really is.

She has had a huge impact on my life — on my family, my friendships, my career and even my politics. For it was never the disabilities that were the biggest hurdles.

The real problems, as for so many of the other 100,000 families in our situation, lay in trying to clear a path through the undergrowth of a welfare state that fails too many of the most vulnerable people.

This is what makes daily life such a trial, that forced my wife to abandon work — the soul-destroying struggle against sclerotic public services, which costs so much time, saps so much energy and wastes so much money. A dysfunctional system that grinds you down, driving you to despair.

This is one reason why rates of poverty, divorce, depression and unemployment are much higher among families with disabled children — along with the bigotry that excludes people with disabilities from mainstream life in Britain.

We have even seen these attitudes in the National Health Service. Yes, there are some fabulous people working there, but we have seen too many who shame supposedly caring professions: the doctor who endangered Iona’s life with the wrong injection, the nurse who ignored pleas for help during a seizure, even the rude receptionists too busy doing nothing to speak to you.

Two years ago, Iona’s condition was finally diagnosed: she is one of fewer than 200 known sufferers in the world from a rare genetic disorder named CDKL5.
But the diagnosis was delayed a year after a consultant at a world-famous hospital lost a vital blood test, then lied to cover up his incompetence.

Meanwhile, an NHS created to fight infectious diseases, industrial accidents and infant mortality has become outmoded. So it is built around big hospitals and is ill-equipped to cope with complex long-term conditions needing a multi-agency response, despite an ageing population and growing numbers of profoundly disabled children.

This is why complaints are rising. And this is among the reasons for scandal after scandal over shameful neglect of elderly patients. Yet still people deify an outdated institution.

Then there are all the battles with bureaucrats and town hall turf wars. Meetings — so many mind-numbing meetings, such avalanches of emails — end with promises of action, but are followed by walls of silence.

The simplest things take forever: it took five weeks, three phone calls and two home visits from community nurses to asses our needs and fill in forms for new nappies. And so often professionals fail to read reports, asking questions answered many times before.

A forthcoming report by the Every Disabled Child Matters campaign group is filled with horror stories, such as the child needing a protective helmet who waited two months to get her head measured, only to be told money was available but no mechanism to make the order.

Or the desperate parent of a child with cerebral palsy told: ‘You’ve only waited six months — other people have been waiting two years.’

For the first seven years, we struggled on our own, unused to asking for help. A social worker came once, looked around our house, then intimated families like ours were not entitled to support.

A couple of years later, another social worker saw how close we were to breaking. She helped win first one night, then a second, of respite with our daughter staying overnight at a special school. It felt unbelievable to have an evening out together, an entire night’s sleep.

Now, chiefly thanks to my wife’s tenacity, we have a good package of care based at home. Our house is filled with a constant flow of carers — but at least we have only been sleeping the odd night on the floor beside Iona.

In the disjointed world of public services, however, everything changes now Iona is an adult. We lose all the things we spent so long fighting for — the decent doctors, the supportive social worker, the life-saving palliative care team — and must navigate a bewildering new world of adult services.

Two years ago, at the first meeting to discuss transition, my wife asked what facilities were available for young profoundly disabled adults in our area of North London. ‘There aren’t any,’ came the reply.

So a fresh battlefront opens up. More meetings, more questions, a flood of new forms . . .

Normally 18 marks the age your child sets out on their own path, making all the choices over their own future. Instead, our daughter must remain dependent on our decisions — and the choices available are so limited.

But for all the trials and tribulations, all that really matters is we still have our wonderful daughter who has brought such unexpected joy into our lives.

Happy birthday, Iona.

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