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Tuesday, July 22, 2014


Sometimes when I look down at my peacefully sleeping baby boy, I like to pretend that everything is fine.

I pretend that he doesn't have a tube in his stomach to help him get enough to eat so he can grow.

I pretend that he doesn't have a list of 13 different diagnoses and a 6 page care plan with the highlights of his medical history.

I pretend that he doesn't have six different specialists.

I pretend that I don't have a 3 ring binder full of medical info and notes on him.

I pretend that he hasn't been hospitalized twice in his short life and that he hasn't had more doctors' appointments and medical tests than I can count.

I pretend that having a child with a genetic syndrome, special needs, or medical issues is something that "only happens to other people."

I pretend that my kitchen counter and one of my cupboards aren't full of syringes, tubes, and medication.

I pretend that I can let a number I don't recognize go unanswered because there's no chance that it's another call from a doctor, medical supply company, or insurance company.

I pretend that I'm not anxiously waiting for the results of the genetic testing.

I pretend that I'm not worried that they won't find a diagnosis from the genetic testing because that would mean that he's one of those "undiagnosed" kids with unexplained problems.

But, I never have to pretend that my son is perfect just the way he is because there's no doubt in my mind that he is.  I never have to pretend that he's surrounded by so much love that he'll never know a moment without it, because he is.  I never have to pretend that he has a network of family and friends who love and pray for him because he does.

"Cause all of me loves all of you.  
Love your curves and all your edges
All your perfect imperfections
Give your all to me
I'll give my all to you
You're my end and my beginning
Even when I lose, I'm winning"  
~~John Legend~~

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