Sometimes when I talk to this stranger I complain about how hard things are. Then the person asks me, "Do you want your children well." I grow silent and don't answer.
Then I wake up. I wake up to doctors, therapies, wheelchairs, ptsd, and those horrible Afos.
The question is simple, but at the same time a loaded gun. You would think that any sane parent would say "YES!! I want them well!" But for me it just isn't a black and white question. It's so many shades of grey.
First of all, I do wish they hadn't been abused, neglected, and suffered. I get weary of fighting the world around me for services, going to doctors, and instead of medicines, sensory diets, standers, and medical paperwork that has taken over my craft area. I want my days to revolve around stories, cuddles, giggles, Barbies, and trucks. I want to call my friends up and instead of discussing Cary Lynn's latest medicines and Marvin's latest therapy talk about what I watched on TV, or what I saw the neighbor doing (probably not, we live in the country and have so many trees that if the neighbors were doing something good, I'd never catch it).
But here is the tricky part. If you spend your whole life yearning for what you don't have you miss what you do have.
If my children were "well" they would never be mine. They entered into the system because they weren't cared for. I would have no Marvin or Cary Lynn. They would belong to another and that alone chokes me up because this house would be so empty and lonely without them.
If my children were "well" I wouldn't have gotten to know the strong community of women who stand by me. These women are amazing and their kids are amazing too. Our children have brought out the best in us.
In my life and travels I have talked with many adults with disabilities. They inspire me. Sometimes I get brave and ask the question. About being "normal and well". Guess what their answer is nine times out of ten?
No. Yup you heard me. So then I ask why? And they look at me like I've grown two heads. I get responses and this is a compilation of what is said.
"Yes, some days we do want to do what everyone else does. It would make life easier. But they learned that they had so much to offer. That they could push boundaries, fight for equality, and most of all teach us that just because you are disabled doesn't mean that you you don't have things to offer or that the gifts you have are inferior. That diversity is the spice of life. And that we all matter. "
Plus, what dawned on me is if I also spend time wishing my kids well I send a silent message that what they are now isn't good enough. While I firmly believe that we can work harder to be better people, I don't want my kids to feel like they don't measure up. Because they do.
I say it often and I mean it. My kids are amazing. And they have so much to offer the world. And they matter to the people around them. And to me. So even though I'll probably never call with good gossip about the neighbors I will enjoy the two precious lives that I have and celebrate who they are as is.
Amy Fields is a wife and mother to two special needs children. You can follow her at her blog Many Kinds of Families