Recently I saw a patient of mine with autism. I have known the family for many years, and I don't think I've ever seen his mother so worn out. She was tired, she said: tired of fighting with and for him. Tired of not having enough help. And plain old tired from everything else in life that still needs to happen every day whether your child is disabled or not.
It made me think of the Erma Bombeck column about how God chooses the mothers of handicapped children. According to Bombeck, God chooses women who are happy, patient (but not too patient, they aren't doormats), selfish enough to take care of themselves and the kind of people who appreciate every small moment and achievement.
As a pediatrician and as the mother of a disabled child who died, I know that's not how it works.
When my son was alive, I used to get angry whenever people said to me, "God only gives you what you can handle." I know that they meant it as a compliment, which is why I did my best to smile nicely when they said it, but what I really wanted to do was shout: Don't you get it? Do you really mean to say that if I had been a bit weaker, my son would have been healthy?
I would have happily traded all my strength and wisdom for my son to have been able to do what other children do, or grow up. And here's what's just as true: sometimes I couldn't handle it. See, that's the thing: the moms of disabled kids are just as human and frail and fallible as anyone else.
I loved my son desperately and fiercely. I loved him for who he was, not who he might have been. I am and forever will be grateful for his existence and all that he gave and taught us. But that doesn't mean it wasn't hard--hard emotionally, hard physically, hard logistically, hard financially, hard on everyone in the family.
Parenthood is hard even when your child isn't disabled. But when your child isn't disabled, well, there's more easy, fun and happy stuff to balance the hard. You can even forget, sometimes, that being a parent isn't about anything you get, it's about what you give.
The parents of disabled children never forget that. Not for a moment. They know and live it every day--and in their better moments they are thankful.
But they get tired and discouraged, like the mother of my patient with autism. That's why I have a request for anyone who reads this column: this Mother's Day, reach out to the mother of a disabled child. Wish her a Happy Mother's Day. Let her know you think she's the best kind of hero: the kind who never wanted to be, and yet still is.