When we were diagnosed in 2017, my best friend asked me “What role would you like me to play in this?”. This was a powerful moment because her instinctive response was, “OK, this is happening, let’s do this, I’m with you”. This embodies the attitude of our Rett community.
October is a tough month for me, as I’m sure it is for all of us. Talking about Rett and living with Rett are two different things. Throughout the year, we roll with the punches and the day-to-day. I stay in a bubble of doctor and therapy appointments, follow-ups, insurance calls and the letters of denial that come in the mail. I make sure Gray has enough formula and supplies for the month, and we work through the surprises of Rett on top of the typical burdens because, for all of us, every day is an unknown.
Here we are, Rett Syndrome Awareness month. It’s been a year of ups and downs for our community and for our strong children who have to fight every second of the day.
Alan and I often sit down to talk about the highs and the lows and try to shift our perspective on the life we have. It keeps us going.
The highs: We are 10 months seizure-free. Grayson lucked out with a great sped teacher, a hard-working advocate and a nurse who adores him. Alan is riding again in the Rett ride across America to raise awareness for our boys. We got a good report from our team at our recent bi-annual trip to the Rett Center at Texas Children’s and during that trip, we had the first time ever playdate with another boy with Rett, Henry! For me, my high was getting to hug Mary, my Rett sister on this crazy journey. I still can’t put into words how special it was for us to see our boys interact. Our families will forever be connected. Alan enjoyed talking to another Rett dad who is equally invested and so hands-on. Is it possible to still have fun? Yes! Was there wine? Always yes!
Our biggest high of the past year was watching Gray adapt to being a big brother and welcoming the chaos that comes with a new baby in the house with open arms… and a set of earplugs.
The lows: We’ve had some heartbreaks and major losses. We lost one of our own, sweet Logan. Rett took him away from us. We also lost the most beautiful girls who should still be here. To the families, we are with you, we are here for you and we will continue to fight for them.
It takes a village, and I’ve found mine here with you all. We have each other’s backs, we have the same hope for our kids and we are all resilient. So while this month is tough, the question remains, “What is your role?”. For me, it’s raising awareness and money for research so we can have #anewdayforgray. Until there is a cure, I won’t stop. We will rise above Rett together.
To read more about the Shukovskys and their journey with Rett syndrome you can follow along on Instagram @EvaShukovsky