Genetics, WCMX, and Being Free

Genetics, WCMX, and Being Free September 16, 2014

I’m just going to jump right on into the update, and say that we saw the geneticist yesterday.  It wasn’t as horrible as I had feared. We also didn’t get any closer to an answer, really.

He was kind, listened to us, and took us seriously. He also said we had been sent to see him too soon. As far as he could see, there was no sign of a genetic abnormality in either our family history or her medical history/physical examination. That’s good. There’s nothing jumping out at him that says it’s her own body destroying itself because it was designed to do so. I’ll go ahead and call that a positive affirmation. Yay!

He also said that there isn’t a definitive diagnosis in her chart. While he can see the dreaded “Conversion” from the neurologists, he also sees the “NOT Conversion” from the psychiatrists. We officially have dueling diagnoses, which means that we have no diagnosis at all. I’d prefer a duel to an incorrect ruling, so I’m content for now to go seek a tie-breaker elsewhere.

 

In answer to all of you who keep asking how she is doing, she’s doing amazingly well. In July, I dragged her to something called WCMX. (Think BMX with a wheelchair.) She cried for the hour long drive down to the skate park, sobbing “I’m a ballerina. I’m not this kind of girl. I do ballet.

I held the line, forcing her to go, and demanding a good attitude for that one day. I was not interested in making a skater girl of  my ballerina, but I am interested in her learning chair control. It’s a safety issue.

Long story short, she LOVED it.

While it’s not dancing, it satisfies a daredevil streak that ballet never could. She’s completely fearless as she sits atop fifteen foot ramps and then drops down them at a hair-raising speed.

 

She began on the small ramps, and has quickly moved her way up to the biggest ones they have.

She munches it here in this second one, but she laid there laughing and yelled “Please tell me you recorded that one!”

Here’s how it looks when the pro does it, and how she hopes to be doing to some day. (Yes, there are professional WCMX people.)

The other day she heard someone say that she was “confined to a wheechair,” and she said, “The wheelchair makes me free. If I didn’t have it, I’d be stuck on the couch. I wouldn’t be able to go anywhere.” This is the gift y’all gave her back in June, when a friend of ours asked for donations to buy the wheelchair that our insurance wouldn’t pay for without a diagnosis. Thank you for that. Look at what your generosity has given to her – freedom, mobility, life. It’s also given me a few gray hairs as I watch her come zipping past me, but the constant smile on her face shows me that it’s worth my fear.

I don’t know what the medical second or third opinions will be. I don’t know what the long term prognosis will be. I have no way of seeing those things. What I do see is that she’s figuring out a way to make her life make sense to her, and I’m thrilled for my ballerina skater girl.

 

 

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