Someone Biffle and I know--not anyone we’re close to, or anyone who reads this blog--said, on hearing about my brain tumor, “Man, that's two shitty hands you got dealt.” Meaning, of course, the brain tumor and the daughter with Down syndrome. This is one of the many anecdotes I’m collecting for a future book project about disability studies, which I’ve always envisioned as part memoir, and now I have another personal element to include, beyond Maybelle.
This comment relates to another anecdote that’ll go somewhere in the book. A woman I know has a four-year-old with Down syndrome. She told me recently that from time to time, people will find out that Joe has Down syndrome, and they’ll say to Dawn, “Bless your heart.” She says back, “We’re doing just fine--bless your heart!” Dawn is savvy enough to know that the “bless your heart” means essentially the same thing as the comment above about being dealt shitty hands, but she’s a traditional enough Southern woman that the meanest thing she can say in response is “Bless your heart”--her version of “fuck you.”
Nobody’s celebrating a brain tumor--it is shitty, and while I’m sure there are priceless life lessons I’m going to be offered in this process, that fact doesn’t detract from the shittiness. But a person being born with Down syndrome--the birth of our daughter—is in no way a shitty hand. Have you seen our daughter? She is fabulous--every molecule in her body is absolutely delectable. Even when she’s whining (a skill she’s perfecting these days--not fun), she could not be more precious. From the moment of her conception, she has had Down syndrome, so it’s been part of her from the beginning. It’s not a disease--it’s simply a component of who she is, and part of my job now is to make the world a place that is more welcoming and accommodating to her, because I believe she’s going to make the world better by being in it.
If life gave us these kinds of choices, there are lots of things I’d give up to get rid of the brain tumor. But I would give up anything I can think of to protect every molecule of Maybelle just as she is. There is nothing shitty about her except her diapers.
And just in case you need a reminder of how fabulous Maybelle is, here's a video made this morning:
Putting the frog in his house from Alison, Walter, and Maybelle on Vimeo.
10 years ago
5 comments:
Maybelle videos, pictures and stories always make my day.
You and Walter have a wonderful, beautiful life because its what you make for yourselves.
Good luck. I know life isnt about deserve but damnit - you three deserve good outcomes and chance to be a loving family together for years to come.
I like Maybelle just the way she is too : )
So adorable! I don't remember Walter sounding quite so county, though. I guess I've spent too much time up north!
I can't remember if I told you that my girls and I sat and watched all of the Maybelle videos; they especially loved the treadmill videos. And bathtime videos. Y'all are amazing parents, and Maybelle is a lucky baby! And Walter looks like Grizzly Adams. When did that happen?
Alison and Walter - I came across a cool blog I thought Id share with you. Written by a woman named Eve with Cerebral Palsy. She is non-verbal so she uses a special mouse attached to her head to use the computer and write her blog. Anyways, she writes about how she feels regarding the way people treat her- speak to her etc. on a daily basis. I really like the blog - she's pretty funny. Her blog made me think of this post you wrote about Maybelle. Here is the link - you might enjoy it.
http://thedealwithdisability.blogspot.com
- Emily
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