Random thoughts on another “numb” day

I don’t feel like I have any coherent story or learning to share today but rather just felt compelled to write. March 2^nd I was sitting at my desk, in a zoom work call, when Dave’s ‘seizure watch’ went off. Within moments I got confirmation that he indeed had a seizure and needed to be picked up from school. This was his first seizure that wasn’t on a weekend OR at night. I slacked my colleagues and they, of course, told me to leave the call and they would handle it. I grabbed Ronnie and we headed out to pick Dave up and bring him home.

This was the first time that I wasn’t hysterically crying. I had an eerie calm about me. Maybe I am just getting used to it, or getting calloused by it, I wasn’t sure which. A few days later, when everyone had left the house (Dave to his Dad’s and my husband out of town to record an album), I broke down big time. I cried more tears than I imagined could be held in a human body. They came out of nowhere, but I was glad to be able to release them.

Now here I am again, 11 days later, March 13^th. I was serving at the Sunday school desk at church this morning and the seizure watch went off. I am thankful for the watch, but, more times than not that thing will continually call (and text) me, the voice activated message repeating the words, “Dave needs your help, Dave needs your help.” It calls and texts over and over until you answer the call OR Dave sends an “I’m ok” response on the app. I swear I have PTSD just hearing the words or seeing the caller ID come up on the screen. It has gone off in the past during Dave’s piano practice, when he is showering (washing his hair I assume) or on a bumpy school bus ride home. Needless to say, it goes off a lot, so my heart jumps out of my chest a lot. So, here I was on a Sunday morning (which the vast majority of seizures have been on), just staring at the phone. Moments later Kristy texted, and then called, and confirmed Dave was having a seizure.

Again, I was able to keep my composure. Kristy told me that Dave was laying on the bed when they ran in the room. And Dave is never just laying on his bed, especially at his Dad’s house. He is always playing on the computer, when he is awake. So, we have a glimmer of hope, that maybe Dave has finally learned what it feels like right before hand and will go to lay down on a soft surface, which is what we have been trying to teach him to do. If I can at least not worry about him busting his face open, or even worse, that would be a huge answer to prayer.

I stayed on the call while she explained what was happening and until he entered the postictal phase (where he loses consciousness and then falls asleep after the ordeal is over). He should now sleep most of the day. I got off the call and grabbed my things to head home. And now I don’t know what to do with myself. I can’t fully explain how I feel after a seizure. I feel like I have all of this stuff inside of me … words, emotions, feelings but I just stand still and silent, almost numb, for a long period of time. And I’m sure in a few days, when I am alone, I will cry my eyes out and begin to, again, go through the grief process which seems to start all over every single time he has a seizure.  

Autism is a hell of a difficult life. You would never catch me saying it is easy by any means. And yet, I sit here now and think that autism is a cakewalk to these seizures. Although autism is truly, in NO way, a cakewalk, I do know what to expect most days. These seizures have no warning, they come out of nowhere and throw your body into immediate fight or flight. And it has been the same every time. Just when you feel your body starts to come out of fight/flight, PTSD, whatever you want to call it, another one comes along and you are back at square one.

And so I just sit here, putting aside all of the things I was going to try to get accomplished today. I sit at my computer and I write and share what has transpired in the hopes that I can get some of the icky out and move quickly through this initial grief phase. Again. And then what? I guess just wait for the next one to come along and start the process all over again.

This life isn’t for the faint of heart. But like I try to do with all the other lifetime trials that we are going through, I will sit here and thank the Lord that Dave seems to be learning what to do and can try to protect himself to minimize any physical damage. And then I will get back to the drawing board and try to find the next ‘thing’ to do to try to help stop these in the future…