Ivan Cameron's death brought it all back to us. Our son Daniel died, aged 16,
five years ago. His condition was virtually a mirror image. We all felt
terribly upset this morning. The trouble is that people don't regard the
death of a severely disabled child as a proper death, but as a burden being
lifted. They don't understand the depth of feeling that you have for a child
like ours. You don't love a disabled child more than the others, but it's a
different bond. So when people think that the burden has been lifted and
that in some way there is a sense of relief, they couldn't be more wrong.
Life never does get easier.
You never recover from the loss of a child. When that child is no longer
there, it's like a star collapsing in the universe, revealing an immense
black hole that is very difficult to climb out of. In a way, you're not just
losing a child, you're losing a way of life
Daniel was born September 4, 1987 at North Staffordshire maternity hospital.
He was starved of oxygen during labour and we were told that he was unlikely
to survive for the first 48 hours and that if he did, he would not escape
without significant disability. He was our first-born and officially
diagnosed with cerebral palsy at three months. The epilepsy was obvious: he
was born having fits.
It had been a textbook pregnancy. But the problem was not just the fact that
he was born with brain injuries. When you're expecting a child, you're
expecting a well child and suddenly you're presented with a child who is not
well at all. It's as if the child that you expected died. So you go through
a process of grief for the child who has been lost, as well as facing the
massive, massive problems of 24-hour full-time care. We were given no
support at all from either the NHS or our local authority. When we were
given the diagnosis, we were told: “We're afraid your son shows signs of
having cerebral palsy. See you in three months.” We could have committed
suicide, no one would have noticed. From three months he was entitled to one
hour's physiotherapy a week. Hardly a solution to brain injuries. One in 400
children are born with cerebral palsy and, when you consider that 650,000
children are born every year, there are a lot out there. So I suppose that
the authorities can't afford anything more.
I was in my early 20s when Daniel was born and working as a chemist in a
ceramics industry. But that had to come to an end as it soon became apparent
that Daniel was more than a one-person job.
I didn't mind because it was for my little boy, but it was another unforeseen
consequence. Later, I enrolled as a student, which I could do part-time, to
study psychology, child development and special needs to work out how best
to help Daniel. Now I run my own child development agency called Snowdrop.
We treat children with cerebral palsy and developmental problems, and
provide programmes of developmental stimulation.
Daniel suffered on average 100 seizures a day. People ask, how do you cope?
Well, how do the people of warzones cope when bombs are falling? You adapt.
After a time, what's grossly abnormal to someone outside becomes normal. At
one point we got the seizures down to 40 a day and were really pleased. But
we didn't really sleep for the 16 years until he died. And we still wake up
every night now.
The nights were the worst. He'd go to bed at 8pm and slumber for about 20
minutes. We would sit up with him, sleeping on and off in two- hour shifts.
We slept in the same bed, but one would sit up reading and monitoring the
baby alarm while the other one slept.
Our main fear was that he would stop breathing or, during his fits, would poke
his eye out with his finger or bite one of his fingers off when his hands
went to his face. So it was a matter of preventing injury. Luckily, he never
stopped breathing.
Our daily routine was always the same. At 7am we would get Daniel up, dressed
and feed him breakfast. Eating was always tricky because of his epilepsy,
his difficulty in breathing and poor muscular co-ordination. Children with
cerebral palsy often have the same fast respiratory rates of babies, which
is equivalent to constantly being out of breath and makes eating and
drinking very hard. He had the mental age of a baby and he could never
attend school in any case because he was hypersensitive, so that his
everyday physical existence was intensely painful. Daniel was born
cortically blind and deaf. But we raised funds and managed to take him to
rehabilitation centres all over the world and, through stimulation, we
brought his sight and hearing back.
Looking at Daniel, people would say that he had no quality of life, but it's
not something you can measure statistically. When we gave him his sight back
and he was able to see his family and two younger brothers, it improved the
quality of his life exponentially. In his mother's womb, he could hear his
parents' voices, and his life changed radically, too, when he was able to
hear again.
As parents of a disabled child you can become like prisoners in your own home.
Most of our friends dropped us when Daniel was born. People don't know how
to react, so we became very isolated. Only when my wife Janet's parents
offered to look after him for a night did we ever get a night off and a
decent night's sleep. They saved our lives. Although he was 16 when he died,
due to his brain injuries he was only about the size of a seven-year-old.
However, over the years it had become more and more difficult to lift him.
Janet is only 5 ft 1in and I still suffer from a weak shoulder, which pulls
out every now and again, due to constantly lifting him.
Thomas was born two years after Daniel, and Harry was born ten years later. We
always wanted Daniel to have siblings. It was the best thing we did, for him
and us. I think that it's made the boys more sensitive and rounded people,
but we made sure that their life was very normal. They went to school and
had friends back for tea, that kind of thing. It changed them, but not for
the worse. Children are exceptionally resilient. But they also felt very
protective of Daniel and always included him while they played. When friends
came round, they would insist that he joined in and would sit him in front
of the PlayStation and tell him what was going on.
I don't think that he really understood, but he enjoyed the company. They were
never upset by his disability. Children were always very inquisitive; they
often approached to ask what was wrong. Once, a little boy asked why Daniel
wasn't wearing shoes - he couldn't wear shoes - so Jan explained that he
couldn't walk. The boy thought about this and then said: “If you put some
shoes on him, maybe he could walk.” We were in stitches, but the mother
wanted the earth to swallow her up.
Daniel died at home the day after Thomas's 14th birthday. He had suffered a
brainstem stroke four weeks earlier, which had put him in a coma. So we had
time to prepare and decided to be open and honest about it with the boys.
Children never forgive you, if you lie. We still talk about him all the
time. His death created a hole in our lives, which you can either ignore and
occasionally fall into, or more healthily, choose to sit on the edge of and
look down, as you remember him.
Received wisdom is that the parents of disabled children are more likely to
divorce. But in my research over the years I've discovered that was not the
case. Parenting a disabled child just intensifies the patterns of the
relationship already there. In our case, it was very positive. It brought us
closer together and we became a solid united front. We only had each other
and my wife's parents, who saved us time and time again.
My advice to the Camerons and the people around them, is that there are times
when the family will need space, and times when they will need support. It's
up to the people around them to know when those times are. To David and
Samantha Cameron, I would say keep it out in the open, especially for the
children, be honest and talk about it. And I'm sure they will, they seem to
be intelligent people, so they will probably do that anyway.
But you never get over the death of a child. It's not possible. You learn to
live with the sorrow, but I miss Daniel today as much as I did the day he
died five years ago. I'm just more able to talk about it. It certainly
hollows you out, but it also makes you appreciate how precious your children
are and what the real priorities are in life.
— For further information on Snowdrop's work, please contact info@snowdrop.cc
Contact a Family provides advice and support to all families with disabled
children regardless of the condition. www.cafamily.org.uk
Interview by Alexandra Blair
