This picture was taken last year on St. Patrick’s Day. As I look at it now, one year later, we should have known.
This is a snapshot of Claire in the midst of her “regression”. At this point, she’s gone completely inward – seemingly uninterested in anything or anyone around her. As the expression goes, she’s “out in left field”. Purposeful hand movements are starting to be replaced with odd, repetitive movements around her mouth. But most concerning, her near constant smile is gone, and along with it, her infectious personality. The few words she was able to say at one point are gone too. We had no idea what was happening, but we knew she needed help.
Three months later, the question of “what” was answered – it was Rett Syndrome.
Another nine months later and here we are getting ready for St. Patrick’s Day 2012. We’ve been through a lot in this short amount of time. At this point, I think we’ve accepted the fact that this is reality, although we still wrestle with the question “why?” I know, personally, at times I struggle with believing that “everything happens for a reason” and “God doesn’t give you more than you can handle.”
This “reality” is far from easy, but we’re doing alright though. At the end of the day, you really just have to stop thinking and just do.
We definitely dove into the deep end head first. Since the diagnosis, we’ve surrounded Claire with the very best doctors, specialists and therapists. We’ve reached out to every County, State and Federal agency for additional resources (unfortunately, without much success). We’ve made a conscious effort to become leaders in the Rett community and are laser focused on helping researchers find a cure for Rett Syndrome and assisting other families like our own (see: Claire’s Crusade).
Colleen is now home on a full time basis to manage and coordinate Claire’s care while trying to balance the demands of Claire’s needs with those of the boys. Speaking of the boys, they’re champs. They really are great big brothers and both are flourishing in school – Nolan in kindergarten and Brendan in preschool. Like us, they have their ups and downs with this whole thing, but they’re fighters. Col is really the glue that is keeping us all together; she really is amazing.
Every day seems to present a different challenge, but with the overwhelming amount of support we receive from friends and family, we keep coming out on top.
Much thanks and much love to all – you know who you are.