The other day I read a story on CNN about a 16 year old boy (Wes Leonard) who after scoring the winning shot for his high school basketball team collapsed and died from an enlarged heart. As a parent, losing your child has to be the worst thing that can happen to you in life. One all parents hope they never experience. This story struck me because of the boy. All all-star athlete, popular, a hero to his teammates, a friend to many, a beloved son whose mom was a teacher at the school who canceled the school play that night to watch her son play. He was the all American kid, the kid many of us would dream of having. The kind of kid I hoped Jackson may someday be. With a promising life ahead of him, he was gone and his hopeful, proud parents left grieving. I too have been left grieving the loss of my son.
I have grieved for the little boy who by this time in his life I envisioned wearing a tiny little tool belt, that matched Daddy’s big tool belt, while they “built stuff”. The little boy I would take to the park to play on the playground all afternoon and then go get ice cream with. The little boy who by now would have his first harness and climbing shoes and would be rock climbing with Mommy and Daddy on the weekends. The Jackson I thought I was going to get doesn’t exist and I really do grieve that. Then I read about Wes Leonard and I feel awful for comparing my loss to his. How dare I grieve for a child that is in my arms, alive and loving. It doesn’t seem right. I still have Jackson. I get to hug and kiss and tickle him all day. Regardless of rationale, I still grieve. Grief is a tangled web.
Is it right to grieve a child that is still alive? Wikipedia defines grief as a “multi-faceted response to loss, particularly to the loss of someone or something to which a bond was formed”. According to the leading (although not entirely reliable) internet source on all things, I am in fact responding to the situation correctly. I can’t imagine that my pain in any way measures up to that of Wes Leonard’s parents or any other parent whose child has died. But when it comes down to it, grieving is what we parents of special needs kiddos do. It is a true and measured response to the “news” delivered to you by the doctors. Despite the feeling that it is wrong to grieve, it is actually very right. We shouldn’t feel guilty about it. It’s something we just have to go through and no doubt, will continue to go through the rest of our lives. Our beautiful children are not who we thought they would be. We have lost something, something precious. So we grieve. We cry, we get pissed, we are in denial, we bargain, we feel guilty, we feel alone, and at some point we accept. In the end we still have our children. That’s where we are lucky. We still get to hear the laughs of our little ones.
Mercedes M. Yardley once said “Special needs children aren’t about grief; they’re about hope.” Touchè Mercedes Yardley, touchè.