How Do You Explain It?

Looks and questions.  Curiosity.  Little Miss gets fed via g-tube in public quite a bit.  Medically it is the thing that keeps her alive.  She has some “disabilities” but the only chronic threat to her life is her feeding limitation. Kids look – with their little open faces – they don’t hide their curiosity.  Adults are respectful (generally) and not invasive.  Of course we make quite an appearance – a “giant” syringe, a tube going to her stomach, up under her shirt, and this container of what looks like pea soup on my lap.

I’ve come up with a short answer to the looks and to the questions:  Her brain played a trick on her mouth and her mouth thinks it doesn’t like food.

I like this explanation.  Kids and grown-ups alike “get it” and it is a short answer that doesn’t embarrass my daughter and even helps HER understand it more.  It isn’t her fault.  We’ve done everything we can and we haven’t made any significant progress.  I wish it were otherwise, but meanwhile we have to be able to put it in perspective and shrink it down to an understandable explanation.


One thought on “How Do You Explain It?

  1. I usually say somethinh along the lines of “She doesn’t know how to swallow so she can’t eat with her mouth”. Not true because she DOES swallow just fine, but easier than explaining that she has some seriously serious oral aversions due to prolonged GI reflux and previous aspiration problems.


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