Ugghhh Again with the numerous tc's?
Last night/ early morning Jake logged 6 nocturnal tc's again. He had been doing so great!
I seriously wonder, if he gets so worn out over the weekend that his little body just can't handle it and the seizures are the only way it knows to cope?
Who knows, but looking back, he was on a pretty good run last week as well, until Tuesday. He had about 6 tc's on Tuesday and then improved again, with little to none, until last night.
Ugghh it gets so frustrating. Just as I think things are getting better, or I am starting to make connections between activities and diets and seizures, something like last night happens.
I am ready for this whole mess to leave our lives just as quickly as it entered.
It's the little things I miss. The things we have once so taken for granted:
signing him up for sports
keeping him up late, past 7:00, to watch movies, work on puzzles, or simply enjoy the great Texas weather
rewarding him with sugary treats
date nights (not many feel comfortable enough to stay with him. It has been over 18 month since we have gone out just the two of us! I take that back, in October The kids stayed with my parents over night, as Matt and I attended the Roundup for Autism...hmmm how many months ago was that? How far along am I?:-))
leaving the house without a suitcase full of medicine and "emergency medicine"
If the beast was to leave today, I would not miss:
The phrase "we can't because of Jake" or always telling Addison later b/c Jake can't, or Jake can't have that and it completely affecting Addison as well.
sharing our bed
the daily medicine administration
the total and complete over anyalzation of EVERY little thing he does.
The feeling of embarassment or the need to apologize for his EXTREME ADHD and behavior brought on by seizures
wanting to back out of every playdate, as I dont know how he will act
and mostly..... having to explain to people why I have no desire to be social and "hang out," as being a working, mostly single, as Matt travels so much,
pregnant mother, of a child with special needs, gets quite exhausting!
(I will not miss the high school drama and gossiping behind my back that goes with the above either)
The lists could go on and on....
For right now though, we are good. I just simply can't wait for it to be GREAT!
Jake, and Addi, have come so far in this journey and I am certain it has made them much stronger people. I am amazed with them daily. They have so much compassion, empathy and understanding. Those traits can never be taught! and I am certain they would not possess them, had the beast not come for a visit. They are certainly my little hero's. I continue to learn from each and every day.
"We must accept finite disappointment, but we must never lose infinite hope."
Martin Luther King
My day with the Pioneer Woman
11 hours ago