I started my series of posts on my life with a severely disabled child full of righteous anger at those who leave families to manage with far less help than they have the means to give: from government agencies, through the medical profession, to fellow parishioners.
But something happened along the way. Thinking about all that we’ve been through since his cancer diagnosis over 34 years ago, I also began to think about all that we’ve gained – as individuals and as a family. (Links to the full series are at the bottom of this post.)
Take up your cross
One of those who has commented on this series said something to the effect that he’d like to give me a life where my son was never ill, never disabled. It was kindly meant. Can he understand, I wonder, that such a life – a life without great grief, without heavy burdens – sounds to me like a curse, not a blessing?
I’m no masochist. Offered the easy road, I’ll take it willingly. And yet… I like who I am. I’m a great admirer of the strong, compassionate, loving, brave, effective man to whom I am married. I am inordinately proud of our children. Our daughters are take-no-prisoners powerful, yet gentle and loving. Our foster son is a man of great tenderness and strength. Our birth son is paradoxically both the centre of and the source of much about our family that I rejoice in. And he is comfortable in his own skin.
Once, a friend of mine urged me to bring my son to a healing service with a visiting priest. He, she assured me, had the gift. God healed through him: cancer, epilepsy, depression – she was sure he could heal our boy. I was mystified for a moment, wondering what ailed him; then I realised she meant healed of his brain damage.
While skeptical of each individual miracle of healing I hear about, I freely accept that God gives some people the gift of healing, and that He can heal anything, and that He sometimes chooses to do so.
Nonetheless, I still was inclined to reject the idea; if our son was not healed, how disappointed would he be? Then it occurred to me that it was not my choice to make. He was an adult. It was up to him. So I told him about Father R., and about the healing services, and asked him what he thought. And – for the umpteenth time in his life – he floored me with his wisdom. ‘I don’t think so, Mum,’ he said. ‘I know who I am and what I can do. If I didn’t have frontal lobe damage, who would I be?’
It hasn’t been an easy road, but we’ve travelled it, and we’ve gained from it. As the old saying goes – ‘what doesn’t kill you makes you stronger’.
What if I’d died in childbirth
Sometimes, I used to play the ‘what if’ game. ‘What if’ we’d discovered the cancer earlier? ‘What if’ they’d known more about late effects, and had used a reduced chemotherapy regime? ‘What if’ we’d had a diagnosis of the frontal lobe damage before he hit adolescence? And I still would wish those things for other people. But it isn’t reasonable to pick on those ‘what if’s’ without considering the others. ‘What if’ he’d grown through a normal childhood and adolescence and gone on to use his wit and charm as a scammer and seducer? ‘What if’ we’d never suffered great grief and heavy burdens, and had continued down the materialistic self-centred path that we’d started on? ‘What if’ I’d been able to use the time I devoted to our son instead on pursuing the fiction I yearned to write – with little to write about, would I have resisted the temptation I’ve seen so many others fall into: to turn my own life into a soap opera scenario; to scavenge and reproduce scandal?
No, reinventing history is too dangerous. It was as it was, and we’ve made the best of it. And the best is wonderfully good, and I thank God for it.
My golden son, the astronaut brain surgeon novelist athlete
I’ve grieved. I grieved for the son of my imagination; and I had to do that in order to bury him, so that I could love the son I have. For a long time, I was too busy to come to terms with my loss – but eventually it all caught up with me. I think I spent three years weeping. (Not continuously, you understand.) But it was needful. If you have a child with a disability, give yourself permission to grieve for your dreams. I fought it, thinking I was being disloyal to my living child – but I wasn’t; I was letting go my dream child in order to love my living child more.
Love the people in your community
And if you don’t have a child with a disability, I hope this series will help you to understand a little more about those who do. Offer your love. If it take a community to raise a child, and it does, it takes a special community to raise a special child. But the rewards of being part of that special community are immense.
By this shall all men know you are my disciples; that you have love one for another.
Below are links to the first six parts of this autobiographical series: