Not Today, But When?

We have worked really hard since she was born to give Emmeline her best shot at life.  At first that meant helping her eat and breath.  That turned into multiple surgeries, doctor appointments and more therapy than I can count.  We have probably spent weeks, if not months in driving time getting her to the best specialists we could find, and she has excelled.  She is doing phenomenal in school, therapy, Girl Scouts and even does part of our family runs with us.  It's more than any doctor thought possible.

But I worry.

She blends pretty well at school.  She doesn't really notice the differences yet in herself and her peers.  They help her feel included and demands aren't super high. They're 8. They wait for her in line, hold her hand to help her down the hill to the playground, run a little slower during tag so she can catch them, pick her to sit with them at lunch etc. In short, most of them are kind. 

But when will that change?  I live in constant fear of that day.  When Emmeline will be left out, and notice.  When kids will get tired of doing everything slower to include her. When will she notice they are doing everything slower and resent it?  She desperately wants to play soccer, but I can't handle seeing her realize she can't keep up, or finally getting the ball only to have it stolen while she plans the motor skill to actually kick it. My heart aches at the idea of having her be so excited to play only to be left in the dust. I thought "maybe we could find a Special Olympics soccer club or something". But she wants to do the rec league with her friends and she would know.  That's the thing.  She's physically limited but crazy observant and smart. You can't get anything over on that girl.  She would know.

I wish there was more I could do/have done to help her. The reality bomb is, that there are going to be things my daughter can't do.  That no matter what fancy therapy or lesson I get her, she just can't do it the way everyone else does.  But she doesn't know that yet, and waiting and watching for that realization is one of the most torturous things I have ever endured.

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