Little boy whose laugh lit up my life
Most children born profoundly disabled are wrapped up in cotton wool. Not Hal, who was thrown (sometimes literally!) into the rough and tumble of family life — as his dad reveals in a joyous tribute
WITHIN a few weeks of Hal’s birth in 1997, it became obvious that something was seriously wrong. As a baby, his sight never focused on anything.
He never glared like babies do. The doctors did a battery of tests and we were told he had ‘developmental delay’ and that he might snap into gear before he was two. He never did.
His vision was at best partial — one eye specialist told us he saw the world as if through a slice of holey Swiss cheese. He clearly wasn’t able to hear much either, though he could certainly feel music and familiar voices.
His disability, it transpired as he grew in the first 18 months, was profound. He was always very small for his age and it took him ages to learn to sit up. He could make noises, but not form words.
I remember the pit-of-the-stomach fear every time we saw a consultant. The news came in dribs and drabs and it was cumulatively disastrous. It became clear he would never walk or talk or fend for himself in the slightest way.
We wept for the ‘normal’ child we had expected and didn’t get. But not for long. We had his three older siblings (a sister and two brothers) to worry about, and my wife Sue and I both had jobs. Very early on, we agreed we would concentrate on what Hal could do, not on what he couldn’t.
Although we had to carry him everywhere, Hal learned to bunny hop about the floor, to climb backwards off a sofa, to pull himself up from the floor on a table leg or fireguard so he could stand for a short while. And he could certainly laugh — the one thing that really mattered to us.
As the youngest, he fitted in because he had to. Space in our London house was tight. When he needed a nap as a baby, he slept in a plastic laundry basket on top of the clean towels.
When we went on an annual holiday to Wales, a cosy bed was made up in the bottom drawer of a chest in our room. Hal was literally wedged into the car along with the dog and the clobber. We always took a three-wheeler buggy so he could go on off-road walks with us.
And so life went on, with adjustments. I was at work in the evenings and Sue, in the early days, kept the show on the road at home. Hal adored his bath time, splashing and yodelling in an evening ritual that never varied. ALL
was as normal as we could make it. Friends followed our lead and Hal was included with affection and without comment. He won everyone over with his smile and easy-going nature.
When he was small, we moved out of London. At the age of four, Hal went through his first medical crisis: kidney failure. He stopped eating or drinking, a not uncommon reaction. We had to feed him an all-you-need formula drink through a peg in his tummy.
I don’t know how he — or we — managed during those two years he was on dialysis, which we learned how to give him at home, and then, when that went wrong, almost daily in hospital. When that started to trigger epileptic fits, the transplant list became our only hope.
One day we got a call from the hospital telling us to bring him in sharpish — there was a kidney waiting on ice. A few hours later, Hal was out of the operating theatre, covered in medical tubing; a bag attached to him was rapidly filling up like the Yellow River in flood. The new kidney was working like a dream. It meant a whole new future.
It’s quite a thought that the last 14 happy years of Hal’s life were made possible because of that organ donation, a quiet deed of anonymous altruism.
We kept his vast array of daily medicines in the larder, which looked like a pharmacy.
The kitchen was his preferred playground, pulling himself around the table top in his specialised wheelchair, which he got when he was eight. Anything within reach he considered fair game. For him, the fun was in the reverberations of the breakages, the clatter of cutlery, the crack of the butter dish. It drove me absolutely nuts — and he knew it.
He was teased mercilessly by his siblings. His nicknames varied over the years: Haliman, Halibut, Halle Berry, Haliborange, Haliburton, Halitosis etc. Hal couldn’t speak but he could certainly sing (think of Dame Kiri Te Kanawa impersonating a flock of gulls) and did so whenever he felt like it.
He spent a lot of time on the sofa, watching telly with the others. But he had to be quiet, especially during The Simpsons. If he made a racket, they piled cushions on him to muffle the sound.
Sometimes there would be yells of real anger and Hal would be dragged by the heels out of the room and the door slammed behind him. The response from his mother was gale force — but she didn’t always manage to keep a straight face.
Social Services never knew the half of it. Hal was used as target practice. Popcorn, peas, pasta and ping bong balls — all served as ammo. The children pushed his wheelchair around in lethal, high-speed circles.
The boys dragged sofas opposite each other and flung him from one to another, Hal describing an arc of giggling bliss. He was bumped down the stairs by his sister between her legs. He was bounced to dizzying heights on the garden trampoline. The object of the exercise was always that wonderful laugh of his.
If he ever looked sad, I perfected a gentle face-slapping interrogation technique complete with comedy German accent: he was soon back on form.
From the earliest days, we were blessed by being near a superb school for children with complex needs. It provided him with a daily structure and an education tailored to him. He was even encouraged to take risks, careering about on a wheeled surf board he pushed along with his heels.
Hal did a version of the National Curriculum — maths involved counting off door knobs as he rode his trike down the corridor — and his school life was full of hands-on activities. We were always pleased when he came home covered in flour, paint or glue.
Sometimes the school bus driver would bring him home via a route that included extra speed bumps just because Hal loved them.
When he was 12, we placed an advert online for some live-in help. Our backs were going and he was becoming harder to care for. Ruth
turned up and hit it off with Hal from the start. Ruth paid rent by looking after him so many hours per week, which we saved up like Air Miles for breaks away. She and Hal grew to be the greatest of friends. She would play violin to him and he would sing along. HAL spent a lot of time in our garden, often under the cherry tree. He loved the cold wind as much as the sunshine. Our black Labrador would guard him for hours, sitting sentinel by his buggy while Hal pulled his ears. He had a real affinity with animals; and they with him. We took him to a Boxing Day meet of the local hunt. Hal was in ecstasy among a pack of hounds leaping up and about his wheelchair.
There were holidays and outings. One to the bright lights of the West end, when this paper sent Hal and me to report on a ‘relaxed performance’ of Mamma Mia for children with special needs. It was a thrilling expedition for him.
Getting there far too early, I took Hal to the pub before the show. I had a pint and some crisps and Hal ate the bag. He adored packaging. The evening was a great success: Hal sang with excitement throughout the first half and snored loudly after the interval.
One knows the feeling. Hal’s circuitry was very jumbled but anyone with any interest could discern a fun-loving character who was naturally sociable.
Just recently, one teacher remembered meeting him for the first time and recalled him as ‘a secure package’. Intrigued, I asked what she meant. ‘Just that we could see straight away that he was loved,’ she said.
It was a great compliment. Mind you, he wasn’t hard to warm to.
Life, as he saw it from his eccentric horizon, made him suddenly giggle, or shout out and kick his legs in glee as if he had tapped into some source of ethereal delight. Most unusually, he was born, I think, without the pronoun ‘I’; he had little sense of selfhood, that clamorous ‘I’ to which we are all enslaved. If he wasn’t an ‘I’ he therefore couldn’t be a ‘you’.
He was, however, most definitely an ‘us’. His place was in the family and he barely ever left it.
A room was always better for having Hal in it — he really did people good. His needs were demanding but he himself absolutely wasn’t. His favourite toys were wooden spoons. At the last audit, we found 54 in the house!
Our families made it known how much they cherished Hal and the care we gave him and they stood by our decision to keep him at home with us.
My much-missed father would always say of Hal, when his name came up: ‘Oh he’s a grand chap!’ It was more than enough.
As any sensible new father soon learns, mums are amazing beasts. Sue looked after him beautifully, drying his hair with a blower each evening before stroking his back and tucking him up with a beloved spoon. Sue’S
totally contented acceptance of who and what Hal was, and her optimistic determination to make the most of his life, were the key to what success we had. I did my best, too, spending hours with Hal in my office, both of us staring out of the window much of the time.
As parents we had many shocks down the years and countless emergency trips to hospital.
We were utterly poleaxed by the widely reported death of David and Samantha Cameron’ s disabled son, Ivan, in 2009, even though they were total strangers. Their loss, we tacitly knew, would some day be ours.
eventually, Hal’s body started to gang up on him. He was constantly in hospital with infections. His consultant warned us, after one attack of pneumonia in January this year, that there would come a day when Hal wouldn’t win. That day came recently.
People who knew us must have wondered if there wasn’t an element of relief. The answer is yes; but relief that Hal has been spared any more invasive treatment. He suffered much this year and his smile had become fleeting. He’d had enough.
So we grieve for ourselves, but not for Hal, who gently slipped away while we were with him.
The problem was knowing what piece of music, among the hymns, to pick for the funeral. We chose He Ain’t Heavy, He’s My Brother, by The Hollies.
It was really our tribute to his siblings, Georgia, Louis and Kit, who grew up along side him and gave him a proper family life.
They never wrapped him in cotton wool and they never complained about the lugging, lifting or all the parental attention they missed out on. In the leaden days after his death, we all agreed that a black limousine hearse wasn’t really Hal’s style.
So on the day, we loaded his flower-strewn coffin into his own van, prayed that the worn cambelt would hold out, and drove him to the church ourselves.
The boys and I carried his coffin. and Hal went down the aisle upon our shoulders, buoyed up on a forcefield of love and grief.
We are deeply proud of Hal, of what we did for him, and just as importantly, what Hal did for us.