Jane Holmes:The fears of raising a disabled childBy Jane Holmes
June 22, 2012
Jane Holmes is chief executive of Wokingham-based charity Building for the Future which provides support and activities for disabled children.
She set up the charity after her daughter Kitty was born with severe cerebral palsy.
This week, on Facebook, a tribute to carers by one of my friends, touched on the fear involved in raising disabled children.
There are all the usual fears that most parents experience … whether our children will be happy, fulfilled, reach their potential, whether they will have friends and people around them who love and care.
We, like them, worry about their futures, too. Whether they will find a life partner, a job and a decent home where they can live safely.
Our fears for the future, however, are perhaps a little more certain. For some, the prospect of a life partner is very unlikely, a job impossible and as for a decent home, well I'm sure we've all heard of the horrors that lie in wait in homes for disabled adults.
But the biggest fear by far is that as parents we will outlive our children. Every parent has this fear, but it is no less when your child is disabled.
In fact due to their vulnerability, it is heightened. Many of us have experienced times when we have come close to losing our children, entering a state of suspended belief.
Often, it's because they have temporarily stopped breathing in the midst of a seizure or a nasty pneumonia.
You watch and wait for those horrifying seconds, disgusted at yourself for drawing breath, sick at the injustice that you still can but your baby can't.
Those of us who have come close, though, are the lucky ones.
Many children have died as a result of their disability. Like it or not, there are grieving families of disabled children all around us.
And these are not children who were ever a drain, or who were unhappy or who had meaningless lives.
These were children who taught those who were privileged enough to really know them, the true meaning of life.
The purity of their spirits and the truth of their love has, in every case, left the world a better place.
But their passing is hideous, unthinkable and terrifying. And while their legacies are divine, nothing is more hellish than their loss.