>> Thursday, September 29, 2016
Today this video came across my Facebook feed:
I began to tear up at her response, at his joy, and the school cheering for them both. Genuine. Touching. Love.
And then I began to think about Bug. I had just given him his SECOND dose of rescue medication in 12 hours and the tears went from 'how touching' to 'it will never be'.
The grief sets in again. With the renewed possibility of helping Bug, the seizures being OFF THE HOOK while he is asleep are even more difficult to deal with on an emotional and physical level. He will get to visit Johns Hopkins and he will, hopefully, get the help he has been waiting for.
I have created a list of things to check for our little man. It reads:
I am reminded with each seizure that I have let him down so many times I can't begin to count. I can say: The Doctors should have...but it still comes down to me making it happen. So I will make it happen and maybe...this video could be of Bug smiling because a sweet girl asks HIM to dance. Odds are not good that will ever happen but...one has to try to make miracles and not just sit and wait for them to happen.