It’s hard to believe that two weeks have already passed since the Rett syndrome conference took place. I haven’t really had time to reflect on it since Katelin and I have been traveling all that time, but I didn’t want too much time to pass before I started posting.
I’m calling the conference a family reunion because I met SO many families where this had been their umpteenth conference. Some families missing only one or two since they began. I felt sort of lame, it being my first, true story. So, I watched these families interact, hug, catch up, flip through pictures on tablets and phones. And me and Katie reconnected with Ashleigh and her daughter who we fell in love with when we lived in Massachusetts. Watching these two girls so far apart in age, yet friends for ever, recognize each other and be so happy to see each other was heart warming.
I listened to the CDKL5, FoxG1, and MecP2 duplication families feel welcomed as unique entities but still a branch of the Rett (MecP2) family tree. All in all, it was at once humbling and joyful. I was impressed with the fact that some families brought their WHOLE families, I’m talking grandparents, parental siblings, siblings, cousins even. I couldn’t help thinking, where are these families coming from? I mean, this just isn’t the norm.
So often Rett families are ostracized units. Extended family just fly away or melt away and all of a sudden people realize they are alone, really, really alone. There are no invites, no parties, no calls, no offers of help. But, at the conference no one was alone. All of us were united, all brothers and sisters in a single fight. We hand fed our daughters and sons, feeding tubes were no big deal, conversations didn’t depend upon our children’s disabilities, we got to talk about normal things, places we’ve been, what we do for a living (or wish we could do), we talked about our other children!, grandchildren, the heat, the too small hallways without having to explain why that was an issue. Normal, normal, normal! We got to be ourselves, just like you’re supposed to be able to be with family.
We listened to people play the piano in the lobby, laughed, congregated, had a drink or two-almost like actually “going out”. We ate with strangers, who were instantly welcoming and no need to explain that a chair needed to be moved to fit a wheelchair, it just happened. For one shining moment we lived a “normal” life, among people who understood each other and never stared, nor whispered, nor startled at a scream, nor made any comments when that happened.
I want to thank all the family that I met, you were all grand.