So, how does one find the "right" clinical trial? Seriously, I'm the patient here, right, and yet I'm the one researching all this stuff out trying to navigate myself around a public health system that is absolutely mind boggling. I feel extraordinarily blessed that I have a clinical background with social work. I don't know how else I'd be faring otherwise.
As I sit here and sip my Chai Latte with real whipped creme, thank you very much, I'm attempting to ignore the past week. Really, the past 3 days to be exact. And I really don't like that. I like treasuring and cherishing every day God has blessed me with. Honestly? The last three days have been beyond, beyond... I find myself heavy sighing a lot. I feel my heart pounding in my chest occasionally. I'm really on edge tonite (and I'm sure the caffeine will help that tremendously! lol). Rascal #1 is having severe meltdowns that I haven't seen before and they are completely out of the blue. I had to take him to the ER today because of the 3 he had today alone, his last one took over 2+ hours with full on escalation, self injury... I called his pediatrician after hours to find out what in the hell I could do and also wanted to reassure that nagging voice in the back of my head that I wasn't overlooking a medical problem that could be triggering all of this mess. The nurse agreed with me and so off we went. I was really proud of how calm I stayed. Not that I get worked up like you'd think -- I'm not a yeller, or a panicker, I worry. That's my niche. But where I stayed was in his head and thought how tormented he must be in that place and how alone and scared he must feel. There was NO WAY I was leaving him there regardless of how emotionally drained I felt. It was nothing compared to his pain and agony. His poor twin was triggered all over the place, reacting, hiding out, trying to escape it in every facet imaginable.
Today 100% of me hated autism. I rarely ---rarely -- feel like that. And it really hurt my heart.
He is asleep, peaceful at last, prayed for intensely, and watched often. His brother, curled up around him, protectively, both, so very loved. Their mother.... hmmm....
tonite, I'm not so sure.