Will isn't much of a hand holder. I always figured that he didn't want to hold hands because he didn't want to be held back any more than he already is. He doesn't have much control over his body but is able to move his hands around on his own, so to him, hand holding could be more like an act of aggression than an act of love.
Imagine my surprise a couple of weeks ago when I looked into the back seat of the van and saw Luke reach out to hold Will's hand, and Will not minding. And this moment was not fleeting. It went on for a long time, and Will was just as happy as could be. Calm and happy to be holding hands with his protector, caregiver and moderator. It was breath taking.
I wish we could extend those hand holds to watch over Will all the time.
We're losing the battle with controlling Will's seizures. Early one morning this weekend, Will woke up around 4am. I could tell he was still tired, and so was I. So I coaxed him back to sleep. I wish I hadn't.
I woke up about an hour later for no reason. No sounds, no gags, no vomit, no thrashing. But I went into Will and Luke's room, and there was Will. Eyes wide, bulging open, fixed to the left. Pillow covered with vomit and mucus. I could tell he had been seizing for a while because his head and left hand had started to tic. Rhythmic and jerking. Not stopping.
We administered the Diastat, and for the next 8 minutes while it took hold, I watched in anguish and fear as Will continued to twitch. Those minutes go by so slowly. Thank God that medicine works as quickly as it does.
I feel like this is one that I could have prevented. I should have known. I shouldn't have coaxed him back to sleep. I feel so much guilt, my heart is heavy and breaking open with these thoughts. If he had only stayed awake, he would not have suffered this seizure. Instead, he suffered through a seizure in his bed, by himself... all alone. Unable to cry out for help, unable to alert us that something was amiss. I shouldn't have gone back to bed. I should have known.
This morning Will woke up again at 4am. I woke up with him. I laid in his bed, and we sang hushed songs for an hour until it was time to wake up Nate. We shared that special time together, and he did not seize. I wish I felt relief, but I still feel so much guilt.
From a neurologist perspective, this last seizure means that we again bump up Will's dosage of Lamactil. But for me, this last seizure means even deeper delving into some of the options in front of us. We're probably going to be putting Will on a ketogenic diet in the near term (future blog post to explain) and also starting initial consultations with neurologists for surgery.
It is with the heaviest of hearts and fearful paths that we find our deepest strength and passionate purpose. It is with tearful eyes and prayerful souls that we ask for love, truth, support and guidance.