Posted on by erniebufflo

Claire WALKS!

By now, you have probably seen me shouting this from various social media rooftops, but my Claire Bear took her first independent steps with her PT today:

This is HUGE. She has been so motivated and has worked so hard to get to this point. All day at home, she grabs us by the hands and says, “Wanna WAH!” I think she knew she was super close, and now she’s finally done it. And she couldn’t have picked a better day– this morning I logged into Facebook and saw the Spina Bifida Association going on about birth defect prevention awareness and how it’s folic acid week. Stuff like that always makes me a little ragey, because I wasn’t folic acid deficient. My kid just got spina bifida anyway. It happens. It’s not my fault, and it’s not anybody’s fault. By all means, if you are a woman of childbearing age, take your folic acid, to prevent all sorts of possible problems in the event that you should become pregnant. But please don’t labor under the misapprehension that all neural tube defects are preventable– I’ve even heard of misinformed DOCTORS saying things like, spina bifida is 100% preventable, and blaming mothers for their kids’ disabilities. (Best estimates I’ve read say that folic acid could prevent about 60% of cases of spina bifida. It would still exist even if everyone had plenty of FA.)

But today, today there is no raging about folic acid. Today there is just rejoicing and celebrating that my beautiful girl has finally achieved something she has been working SO HARD to achieve. She’s stubborn and tenacious and hopeful, and I truly believe nothing can hold her back.

6 Replies to “Claire WALKS!”

  1. Wonderful video! Makes me so happy. Seriously excited. Is she wearing AFOs?

    Oh! And I detest the SBA’s focus on folic acid and prevention. I wish they would put more of their efforts towards supporting families who already live with this diagnosis and less effort into prevention. Especially since taking folic acid is not a guarantee. The SB families I know are about 50/50 — half took folic acid and the other half did not. I understand that prevention is important but it feels odd when the group that is supposed to be our children’s voice is so interested in talking about preventing children like them from existing in the first place. And it sends a message of parental fault, which is very unfair. Getting ragey :)

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    1. Mary Evelyn: yep, she’s wearing knee-high AFOs and some special theratogs and straps to rotate her feet straight. It’s amazing the difference the straps have made in helping her walk.

      And yeah, the SBA should maybe focus on resources, services, and destigmatizing people with SB who are already here. I think folks like the March of Dimes are already holding it down in the area of getting people to take FA.

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  4. This made my day!! Congratulations to Claire! I’m a triplet with cerebral palsy, and I just discovered your blog via your comment on Mary Evelyn’s. I can’t wait to read through the rest of your posts.

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