This is a favorite quote of many Rett syndrome parents. It is often posted. Some have tattoos with it. I’m pretty sure there are T-shirts with it. Shakespeare had no idea what an impact that one little sentence would have out of the thousands he penned. And each and every one of our girls and boys must fight some bitter battles. We are lucky that there are many fighting with us so that one day we might not need to quote that line.
Katelin fights anxiety, every day. Some days are much easier than others, but it never goes away for long. She wears a helmet often during the day because one never knows when she just might walk over to a wall or door or window and smack her head into it. But, she fights hard, she struggles to get it under control. We work on coping mechanisms, teach her to sit down on the floor when she can’t get it under control. I’m proud of how hard she tries. She tells me “almost done” as she struggles against the flow of cortisol coursing through her veins at 1.5 x the normal amount. Fight or Flight. It’s always fight. My girl never runs from a fight. She takes it on and apologizes over and over, even after she calms down…”sorry, mommy, sorry.” and I tell her “you did good and I’m proud of you.”
So, I have a funny story…because we must find our humor where we can….
Katie was walking yesterday, wearing her helmet, just in case. A little boy came up and asked….Is she a boxer??…I chuckled, “No, but she does have a great left hook.”
For whatever Rett syndrome takes away, there are moments of true strength in our girls and boys and us parents. We are fierce, too. But, our children are fiercer, still. How lucky we are to know true bravery in the ability to take a single step, or hold a spoon, or give a well landed left hook.
And the Rett community is fiercely driven, with the fifth site now open for enrollment of the Trofinetide pediatric trial. Just about half the sites are open now. Let us all hope for the rest to be open soon and the slots fill up quickly. For more information see www.rettstudy.com