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How Do You Explain It?

Posted Sep 16 2009 12:00am

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.

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