Still getting 20/20 feedback

[browning93]

For the new folks, I'm LeeAnne, Michaela's mom. She is 5 1/2 and has LOBPI. She has had primary sugery and Mod Quad surgery just 5 1/2 weeks ago at Texas Children's Hospital.

On Saturdays, my husband Roger usually takes Michaela to our local library for school age story time and then to the local school supply where they have free craft projects for the kids every Saturday.This is his time with her, since I take her every where else. I started taking her to the library for story time when she was 18 months old.She usually wouldn't participate in the fingerplay songs between stories just watch the other kids, then try to do it at home. I really think she was noticing she couldn't do the things the other kids could do with both hands such as itsy bitsy spider. Anyway, The librarians all have known her all this time and several used to ask about her arm and I'd try to explain but you could see them get the glazed look. Well today Michaela and her Dad went and everyone was asking about her splint and 3 of the librarians said they saw 20/20 and was that what happened to her.Roger said yes. They FINALLY got it!!! They've known her for 4 years and they just now got it because of 20/20!

Michaela came home and said," I'm so tired of everyone asking about my arm! One girl asked me what happened to my arm and I told her nothing. I didn't know who she was so I didn't want to tell her! And all the old people ask me and Daddy." Well the only thing I could say to her was if she didn't feel like telling them she didn't have to.That's OK. I couldn't believe we were having this conversation already.She's only 5 for goodness sake!

I hope I told her the right thing, I let it ride and changed the subject to the St. Patricks hat she made at craft and she told me how they all liked her splint decorations. They sell alot of the foamies there for crafts.

Hope everyone is having a good weekend! LeeAnne

[browning93]

Ooops, I forgot to add that Michaela also has Horner's Syndrome Left eye. LeeAnne

[Kathleen]

Good for her - talking about it with you....

I am right obpi and---
I belong to a woman's club the girls have know me for years... at least 15... A year ago I spoke for the first time in public about my arm... They loved it... and took information and several gave information to pregnant girls who knew what to ask... 2 had huge 10 lbs babies this year via C-Section because of it....
YET...YET... the other night I was at a meeting and they started to talk about the 20/20 show.... and I said "That was me"... yup they did not get it...but they do now....

As for the old people asking questions.... they still ask me from time to time.... and I am 62 yikes!....
I agree with Michaela... sometimes I just don't feel like talking about it.... other times I use it as an opportunity to teach.... and boy want to see the glaze over eyes then!!!!!!!

Kath

[browning93]

Kathleen, 62 years young you mean. Michaela thinks her 16 year old cousin is OOOOLLD!LOL LeeAnne