Monday, July 18, 2016

What's wrong with her?

They warn you to brace yourself; to be sure you are ready for that dreaded moment.  The moment that will come out of the blue, unexpected and will catch you completely off guard.  The one where you are simply just being a typical mom and then the innocent question presents itself.  "What's wrong with her"?  If you have a child with special needs, you might have even prepared a script for when this moment might occur.  Odds are even if you did, you will forget it when the time comes anyway and in some instances that might not be the worst thing.  What is not always shared is that sometimes this question will actually evoke a feeling inside you not of anger nor of sadness, but actually of pride and happiness.

There we were at a playground on Saturday afternoon.  Two seven-year-old girls playing with Sonzee's older sister walked over to the stroller.  They looked at little bear and they said, "What's wrong with her?" as they pointed to the feeding tube coming out from her nose.  A look of curiosity and confusion filled their faces.  I did not feel the punch in the gut that I would have expected.  I did not panic, and I did not want to crawl inside a cave.  I wanted to celebrate.  I wanted to educate.  I wanted to explain as much as they wanted to know.

What courage it took these girls to ask and not point, stare, and walk away.  They were so interested in what I told them, they continued to ask questions.  They looked at her and said "Hi", of course, Sonzee did not give a bright-toothed grin, nor did she even acknowledge they were there.  "How old is she?", "17 months"...Does she talk?”  ..."no, she can't", I still turned to Sonzee and I said, "Say hi Sonzee"...."How does she say hi if she can't talk?”  ...I am still figuring a good answer for that question and it has been 2 days.  I explained her feeding tube in the best way possible so that two young girls who probably have never thought about their anatomy involving the digestion of food could understand.  They walked away satisfied with my replies.  I felt relief at how the exchange occurred.  I felt excited they cared enough to ask questions.

I anticipated a moment like this to leave me choking back tears and feeling discouraged.  Instead, I found myself beaming with pride and happiness that Sonzee mattered.  There are so many times that I am asked, "How old is she?”  I reply "17 months"....silence follows.  I often wonder if I lied and said she was 7 months would people then reply, "Oh she is so cute", "Look at her little rolls", "She is just so yummy".  I can see the discomfort on the faces of many when they walk over and see the tube in her nose.  I know they want to know why.  I so wish they would ask.  I will continue to brace myself for the day that a question rubs me the wrong way, but celebrate the opportunity to educate another person.

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