Here We Go

Pook and I are on a plane to Florida right now. Pook will be having tongue reduction surgery Monday morning and we need to be in town two business days prior for COVID testing. In addition to testing, we’re attending the 2020 Beckwith Wiedemann Conference over the weekend, which also happens to be in Miami. It’s a full day of travel on either side, but I have a sneaking suspicion that the flights there will be easier than the flights home, with Pook only three days post-op.

Being a special needs parent is challenging in a variety of ways, but I was mostly unprepared for the challenge of grief. There is grief when your child is born and you learn they will have a different life than you’d pictured for them. There is grief as they suffer or are scared. There is grief when you watch them struggle over something that’s easy for other kids. And, most recently, there is grief as you pursue a surgery that your child needs but will change everything you know and all the ways you’ve managed thus far.

Tongues are a pretty big deal. You use your tongue to swallow, speak and eat – all very important functions. One of the most common traits of Beckwith-Wiedemann Syndrome is macroglossia, or an overgrown tongue. We’ve known Pook needs this surgery since she was in the NICU and couldn’t eat by mouth while breathing. (Also kind of a big deal, right?) We’ve been seeing a feeding therapist since Pook was four months old. They told us she’d never eat solids and that she’d never speak, but nobody tells us Bradshays anything we can’t do. We pushed for more therapy and at-home exercises and have made massive amounts of progress… Just not enough to not need a tongue reduction. I thought we were having this done last summer before our trip Philadelphia turned into such a fiasco and we got our surgery date for this year back in March. I’ve had enough time to adjust to this idea mentally – at least, I thought I had. But this week I’ve caught myself staring at my babygirl’s gigantic grin and tearing up.

I keep thinking about how much pain she’s gonna be in and how much I hate that. I wonder what her sweet face will look like without that goofy tongue I love so much. I pray she’s young enough to forget all this as she grows. I only have a thimbleful of memories from her age, so hopefully this surgery fades like old chalk. As I told a friend today, I am just unutterably sad that her face will never again be the one I first fell in love with. Yet I am utterly triumphant that we’re finally here, that all the fighting and pushing MEANT SOMETHING. It was not all for naught.

Motherhood is complicated.

And then there’s this kid. Totally oblivious to all that’s happening, Pook just wants to watch Daniel Tiger videos and yell at the flight attendants every time they speak over the PA. She points at the ceiling and shouts, “NOT OK!” in such a stern tone that I crack up each time. I have zero chill because Pook took it all. Just turn on the PBS Kids app, give her some Goldfish crackers and leave her alone.

Keep us in your prayers this coming week. Pook is good apparently, but her mom is a bit of a mess.