If you are the parent or other family member of someone with a disability do you ever get tired of the disability? Do you get tired of the explaining, the questions, the stares, the changes you must make in your life? Do you feel like you work as hard as you can and yet you still cannot make enough of a positive difference for your loved one? Do you just want a vacation from disability?
I read this post today about a Mom who is right there. And this one from a single dad with a disabled son and daughter. And I understand, to a degree.
I have found from reading many blogs from parents of children who are severely disabled that those parents experience so many different emotions than I do based merely on the fact that they gave birth to their child rather than like me, chose their severely disabled child(ren). Sure, we share some of the same emotions – sadness, hope, despair – but there is one big emotion that we don’t share – guilt.
With Ashley, I was not the one who drank to excess during her gestation. I was not the one who was bulimic and chose not to get prenatal care. I wasn’t the one who smoked and did drugs. I am not the one responsible for the effects all those things had on my sweet Ashley.
But I am also not the parent who did everything correctly while pregnant only still to have a child with severe disabilities. That, I believe, is a source of even greater guilt for some parents.
So I think I can understand the words of parents who had no choice in their children’s disabilities. Their words are difficult for me to read, and I think that is because I did have a choice. While I appreciate the raw emotions and the gut wrenching honesty of those parents, I find that it hurts my heart to read their words too often. If I feel guilt, it’s because I walk away from those brutal and honest words, and the pain that is shared. Guilty because I know listening and reading doesn’t do me any good. I will stop by occasionally because I need their perspective, but not often enough that their visions darken mine.
Perhaps that means I am not a very nice person, but I am a parent to children with severe disabilities, children I CHOSE. And my life is richer beyond belief because of those choices.
I don’t want a vacation from disability – I want a vacation with my children without other people handicapping them and our family.
I'll admit, I have a hard time swallowing the fact that Peyton has a neural tube defect, and I 100% blame myself. I blame myself for using the clomid, because maybe there is a reason we weren't supposed to get pregnant, if we would have just waited, it would have been better. But..at the same time, I love that little girl to death. What I don't love is what he has had to go through & will continue to have to go through for the rest of her life. It's heartbreaking. I don't understand how I took 2x the amount of folic acid recommended, for a year prior to pregnancy and she still has a neural tube defect, not to mention the CP from the hemorrhage, and everything else that happened during my pregnancy. It just doesn't make sense to me, I want a doctor to tell me WHY but they can't.
ReplyDeleteThat being said, now, if we ever did adopt we would 100% adopt another special needs child (CP/SB/DS)