Twenty six years ago today we welcomed the arrival of our second son.
Every birth is special and there was added poignancy to Dan’s because his older brother Tom, who had been born a little more than two years earlier, had lived only 20 weeks.
Extensive tests throughout Tom’s life and a post-mortem had ruled out all the known genetic conditions. We were told barring the one in a million chance Tom had suffered from something medical science hadn’t picked up, it was safe to have another baby.
Dan was that one in a million baby. A couple of weeks after he was born he started having convulsions. I’d watched his brother have hundreds of fits and had no doubt about what was happening.
We called our GP who sent us down to Dunedin hospital where Dan went through the battery of examinations his brother had, and like those for Tom they came up with no diagnosis.
As various diseases and conditions were ruled out though, his doctor became as sure as he could be about the prognosis – Dan’s life would be short and his development severely compromised.
Dan defied the prediction of his imminent death but not the one that he’d be profoundly handicapped. He lived more than five times longer than Tom had, dying a couple of weeks past his fifth birthday. However, he passed none of the developmental milestones and could do no more the day he died than he’d been able to the day he was born.
Caring for a child with multiple disabilities was demanding but we were supported by a close extended family, true friends, wonderful health professionals and IHC.
When he died I was sad, but I also felt some relief from the knowledge that his death would free us from the challenges which his life had presented us with.
In spite of that sense of relief, I was also confronted by grief for the baby we’d wanted and loved so much; and not just for what we’d lost but what we could never have – the hopes and dreams for his future as a happy, healthy boy and man.
The stages of grief – denial, anger, bargaining, depression and acceptance – make it appear orderly.
It’s not. It’s messy, unpredictable and it hurts. But, like a wound, it also heals.
There is no wonder treatment that can help the healing, but like Robert Fulghum:
“I believe that imagination is stronger than knowledge-
That myth is more potent than history.
I believe that dreams are more powerful than facts-
That hope always triumphs over experience-
That laughter is the only cure for grief.
And I believe that love is stronger than death.”