Christmas Eve 1989 we buried our second son Alan. He was just 22 months, no age for any child to leave this world. His little body had finally given up after 22 months struggling with the fallout from spina bifida. I carried his coffin up the aisle that day and the memory still haunts me in a way my facial disfigurement never did. Who expects to bury their own child, a beautiful boy whose life was blighted by illness, hospitals and disability?

It was a day we had expected and yet were hopelessly unprepared for. Who is? His final decline had begun months earlier and through those hours, days, weeks and months we died a little with him. The light in our lives was extinguished just like that of his own ravaged body. The 22 months of searing emotional pain for Trish and I, the agony of countless hospital trips…

View original post 1,325 more words