And to all those at Neuren and Acadia and Margaret Brimble who...

And to all those at Neuren and Acadia and Margaret Brimble who have brought many of us closer to that day when Christmas can indeed be merry, thank you. That Hope is the greatest gift of all.https://trailtoatexastrial.wordpress.com/

Christmas is by far the most difficult of days. To describe a Rett syndrome Christmas one would have to take a Christmas, tragedy, drama, comedy and horror movie, cut the films in pieces and then put them all back in some awful, random order.

It could be that there’s a year in there that seems to go smoothly enough. Maybe it’s the one year the over stimulation doesn’t set off seizures; the one where everyone could open presents together instead of in separate rooms. It could be one where the mom actually got to eat with the rest of the family, or the dad wasn’t left to keep all the other kids entertained, or the one where the mom got to see the other children’s eyes sparkle at the cookies eaten and carrot pieces left outside the door. Maybe.

I watched my little ones open presents, I had to learn to be content with that. So many years, I didn’t even get that. I mostly regret the toll it took on my other children.

As an atheist,one might be curious why I should care at all. I think people would be surprised by how many of us do.

But, it’s this- Hope- Hope that magic always touches children. Hope that one day Katelin and all the other children and adults will be able to experience, even if it’s just ONCE, joy on a magical scale. Christmas brings with it so much goodness; so many true wishes for peace and love, goodwill toward Men.

I know Katelin can feel it. Every time she sees Santa, she feels it. She feels completely accepted and loves him. Santa is her main man. So, yes, I believe in the magic of the season and I will keep hope alive that… one day it won’t overwhelm her, that we aren’t waiting, every moment, for her to start screaming. I will hope that all over the world, for at least this one day, families know no sorrow, that all children are warm, healthy, safe and happy.

And to all those at Neuren and Acadia and Margaret Brimble who have brought many of us closer to that day when Christmas can indeed be merry, thank you. That Hope is the greatest gift of all.