With Father's Day just one week away, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.
First up: Pete Curry, Maisy's dad.
We had it all planned …. My wife would take three months maternity leave and then I’d cover things until a slot opened up at the on-site day care at the University where I worked. I envisioned taking lunch breaks and bringing Maisy into the lab – maybe she’d learn to love real science instead of political science like her mom. As it turns out, I do get to bring Maisy to the lab, but it involves things like blood draws and eeg’s, not exactly the fun experience I had planned. Rett changes things. And, no way around it, change is hard.
I’m trying to think of what advice I’d give someone approaching their first Father’s Day as a Rett Dad – my first was spent curled up next to my daughter in a hospital bed, which was a more harsh introduction than I think I needed. At that point, I just wanted the seizures to stop (and maybe a cup of coffee). On the practical side, I would say figure out some parts of your daughter’s routine that you can take on. For me, it’s getting Maisy ready for school – dressed, breakfast, meds, pack the bag, potty, get her to the bus. I also do a bunch of other things, but my wife is going to read this and, being a lawyer, she’d probably argue that I don’t always do this or that.
But, more important, I guess I would say that remember your daughter is not as fragile as she looks (or your wife thinks). You can dunk her in the pool, tickle her chin, and swing her high. Yes, she may start to laugh too hard and have a little seizure, but what’s the alternative? No laughter? No fun? No thank you.
Happy Father’s Day.