My tortured love

In my two articles last year I looked at the life and death of my
22-year-old disabled son Robbie and my grieving process. But what
is it like to be the mother of a disabled child?

Bringing up any child is hard work but rearing a disabled child is
infinitely more so. It challenged me at every level. My son was
disabled by virtue of what had happened to him at birth. My life
had been irrevocably changed and I had to adapt. I ached for the
healthy child who might have been but wasn’t.

It started from the moment I knew things were not “right” with
Robbie. The anxiety was horrendous. Being first-time parents was
perplexing enough but being plunged into a world of incubators,
tube-feeding, tests, waiting for results was worse.

There was guilt, irrational though it may have been, that I had
brought this trouble upon my own child. From the guilt stemmed
faulty handling, a falling over backwards to “make it up” to my son
who was struggling to relate to the world normally. There was the
pain of witnessing his struggle, of seeing my child’s progress fall
further and further behind that of his contemporaries. The
embarrassment of him dribbling profusely until he was six, seeing
people recoil from his slimy state and his eyes showing their
rejection. Even then, I found it difficult to cuddle him in that
condition. I faced a terrible mixture of feelings; those of the
fiery vixen fighting for her cub, warring with my own needs for
relief from the task.

I called my love for Robbie “tortured” and it was. My commitment to
him was immense. I would have done anything for him – and I did –
but there was never the warm and easy flowing relationship that I
knew later with my younger and healthy son. It was a perpetual
battle against ill-health, co-ordination difficulties, antisocial
behaviour and perpetual demand – the black hole of unanswerable
need.

But there was also constant learning and the satisfaction and
thrill of small progress. There was the challenge of finding help
and seeing development, the accompanying of a strong spirit who saw
life differently, who in turn gave me another outlook. He brought
me into contact with people and places that I would not have
encountered. He forced me to go deeper into my own resources, to
explore emotional and spiritual truths. Robbie made me question
what real love is – he showed me how conditional mine was. I saw
him reach manhood, questioning, challenging the status quo, pushing
people to their mental and emotional limits. I was proud of him and
dismayed by him. It was too much in the end for him, he couldn’t do
it any more, he was tired. He had to go and I had to allow him to.

Then there was the missing him, the loss of that part of me which
belonged to him and always would do, combined with the release from
the worry, the strain and the hurting. Robbie was, and is, my
teacher.

Judy Clinton’s late son, Robbie, had cerebral
palsy.