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Sunday, July 11, 2010

Boy Meets Chair

It's been 13 months, 5 insurance denials (at least), and three phone calls with the governor's office (!), but finally, the boy got his wheels. There are still some tweaks to be made in terms of his seating and joystick placement, but behold the beauty of coordinating boy/girl power wheelchairs:

And note that even photographing them from the back, Kyle is still on the left. Have you noticed that? I almost always put him on the left. I don't think I'm OCD or anything, but the boy being on the left is certainly a recurring theme with me. Also, I am left-handed. Also, the girl is left-handed. The boy is a rightie. I don't know what all this means--you pick it apart for me because I'm already confused after just writing this paragraph.

So, in case you're joining us for the first time, my twins just turned 3 years old and have a neuromuscular disease called Spinal Muscular Atrophy. They didn't show any symptoms until about 9 months of age, and it took 6 more months to get a diagnosis. SMA kiddos are super smart and social, but their bodies are weak. This is a degenerative disease. It is terminal. There is no cure. That bears repeating: My twins have a terminal disease, and there is no cure. But there are some nifty ways to make life more normal for them, and $65,000 power wheelchairs are one of those ways.

We also have a daughter about to start the first grade, and she does not have SMA--however, she does have what I like to call 'bout-to-be-terminal-sassyness. But my middle name is patience, so 'we shall overcome'. No worries.

Lauren got her chair in January, but Kyle's chair inexplicably got delayed 6 more months. The powerchairs are the reason why we're moving to a different house. We closed on the new house last week and hope to be moved in by the time school starts next month. We're also shopping for a wheelchair accessible van so that we can, you know, actually go places with their chairs. We're looking at shelling out well over $50k for such a thing, which completely blows, quite frankly. If I spend $50k on anything, it better include some sort of kick-ass tummy tuck for Mom, amiright?

So to those who stuck with me during this year-long ordeal, thank you. I know that complaints are not very interesting to read, but you hung in there and I high-five you for that. And my blogging frequency may be affected with the big move we're about to embark upon, but I hope to get back to the regular funny shortly after that. xo

p.s. the Jerry Lewis MDA telethon will occur Labor Day weekend, somewheres around September 5th, 2010. Watch the blog for some potentially interesting updates on this. Nothing is finalized yet, but let's say that the twins and TV cameras could be involved. Shhh, you didn't hear it from me.


  1. I'm so glad Kyle finally got his chair! And I can't believe how Lauren whips around in hers. She is FAST!

  2. I was excited to read the line "in case you're joining us for the first time..." and then to read briefly about your story because I AM joining you for the first time. :) I stumbled upon your blog through the BlogHer website and something about it struck me.

    I'll be back!