How I Prepare for Battle

By Guest Blogger, Brittany Gummere

It ever gets easier. I’ve lost count how many times we’ve handed our daughter over to someone in blue scrubs. Those blue scrubs have cradled my baby, hip-carried my toddler, and now hold her hand and walk with her. Away from us, waiting in a room for them to bring her back.

Our daughter lives with Phelan-McDermid Syndrome and a 7q Duplication. Before each procedure, just minutes before they take her back, I have to sign a consent that acknowledges that I am aware of the risks of the procedure and the anesthesia. They tell me risks are small and give percentages that are supposed to be comforting. But they’re not zero. And, when your kid in the epitome of small percentages and sees being them as a challenge, they’re even more daunting.

I noticed that this morning when I woke up, I began to clean a little more thoroughly than I normally would. I packed extra clothes and made sure I ate a big breakfast. I made mental notes of where items were and double checked our hospital bag. I realized I was doing this in case something went wrong at this very easy, in-and-out procedure. Something requiring us to stay in the hospital. Or, in the most unlikely of circumstances, to return home without her.

This is second nature to me, to prepare for the worst. My counselor and I broke this down a couple weeks ago. This isn’t a panicked, anxious time. I feel calm, cool, collected - almost as if preparing for battle. There is not one bit I can control about my daughter’s life. I learned that as quickly as I learned that “low risk” doesn’t mean “no risk.” It is discouraging, anxiety-producing, and just plain sad.

But preparing, even just a bit, is comforting to me. Putting a dish away or eating an egg or packing extra clothes all help me feel a bit “ready” for nothing that I could ever be ready for.

P.S. My daughter’s procedure went great. She’s a little rock star. And we get to go home to a semi-tidy house, so it all works out…