>> Sunday, December 20, 2015
14 seizures in 18 days...not a bad average. Last night threw it off a little, 2 in 3 hours. :( But a restful night and he is getting sick, so we would expect at least 10. Holding my breath for the rest of the day.
Working on the KBG Foundation is very daunting and yet, has the potential to be very rewarding for a number of people. 60+ in fact.
I downloaded the abstracts for all 43 PubMed research papers and as I was reading through them, I got sad, and happy, and sad again and slipped into the: remember when he was typical?
This holiday season has been exceptionally brutal on that front. Not sure why. Maybe it started with a video Glenn found of the kids opening and playing with the Christmas presents and each other. I watched Bug tugging on Taylor and her squealing with delight. He would tickle her and let her get away, only to go grab her again. She loved it. We loved it. We were that happy, normal family. One boy, one girl and clueless.
Maybe it started with me listening to Ava and Aiden getting better at speaking, at swearing and being adorable and me...always looking for what may signal something is amiss.
It's the bane of having an oldest child with a different, more complex, medical need. Especially one that, seemingly sprang from nowhere. One year he was eating his birthday cake with a fork, very carefully, with little to no mess and then next...he wouldn't even look at the cake. Or his presents. Or his sister. Or me.
Every Christmas, I torture myself and think that maybe this is year he WILL open his presents again. Maybe this is the year he will hand people their own presents with a smile. I think MAYBE this is the year for....a Christmas miracle.
And then Christmas morning arrives, the littles gleefully jump up and down at their treasured presents (for hopefully at least a week or two) and then I go get dressed and cry. Yep, I admit it. Every Christmas since he was 5. I will try not to that this Christmas, I will try to keep my eyes on the joy of the children, the family, and Bug. I will try. I guess, that would be my Christmas miracle, the only one it seems I will get a shot at for the next few years.
Don't get me wrong, I love watching all of my children enjoying the magic of Christmas, and in the moment, it is all about their excitement, their happiness at watching people open the gifts they picked out for them, not just what they received. There are a lot of laughs. It's just that ever-constant ache at missing my boy still, the ache I haven't ever truly gotten over it seems.