He will wipe away every tear

Oof.

This post has been waiting under the previous few for a chance for me to sit down and write and think.

Reuben's seizures have been a moving target since they started going on ten years ago. We'll settle into a normal semi-predictable routine and stay there, usually for a few months at a time, and then...it will change! And we'll figure out the new normal. Sometimes these changes are minimal (seizures hit in big clusters every 4-5 days instead of every 6-7 days) and sometimes, like the fall after the girls came home, it's a much bigger shift, where we went from most of his seizures being weekly clusters of tonic/clonic seizures that usually started during the night time hours to a new pattern where the seizures were hitting at all hours of the day, and were hitting every single day. He regressed in so many areas during those months, and it was really hard to see the boy we knew slipping away between our fingers.

Late that fall we started medical cannabis and another pharmaceutical, and ended up with a beautiful month long reprieve (no seizures!!! Ca-razy!!) and then for the last two years have been more or less predictable.

Until a week or so before Christmas. We'd seen two or three days in the month leading up to it, but then, like a switch, he's been having more or less continuous partial seizures all day and most of the night. Sometimes they're punctuated by the bigger tonic/clonic seizures, but mostly he's just walking or sitting around all day having short little seizures. It's tough for him to even eat or drink because he often can't make it through the bite-chew-swallow without a seizure hitting, and some nights we catch as much of his chocolate milk drooling back onto his plate as he gets into his belly. Most of his seizures have been partial enough and he's got enough awareness of them coming that he can grab onto someone or something until it passes to keep himself upright, but some of them have impacted a broader part of his brain and he tumbles all the way down. He's wearing his helmet a lot more often, but despite that, has had three really good wonks to his chin since Sunday. The first we thought initially was going to need stitches, but it ended up being wider than it was deep, so we made it at home.

We've gone through so many thousands of seizures with this boy that most of the time we just cover them in stride like we do for runny noses and poopy bottoms. And then there are times when holding him through one of those seizures just cuts through me and brings me to tears. That dear, dear boy - so sweet, so isolated because of his limited communication, so isolated because of his differences - all the things he'll never have in this life because of his medical challenges - and so fragile. Living with a child with intractable epilepsy is a daily reminder that we can't take for granted any of the days that we have with any of those whom we love.

The night I started this post, with simply a title to help me remember, was one of those nights that I cried as I held him until the post-ictal stage of the seizure had passed enough that he could go back to sleep and I could head back downstairs. And as I lay there holding him, I thought of the truth of what John records in Revelation that "He will wipe away every tear from their eyes..." and recognized that in order for him to wipe away every tear, there have to be tears there to wipe away. As this (temporary) life makes me yearn for the life yet to come I find great comfort in this little tidbit of knowing that in the new creation there IS a place for tears over the heartache we have experienced in this life. We are not going to be emotionless creatures who don't care about the things that have happened. There WILL be tears. And then those tears will be wiped away "...and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away. And he who was seated on the throne said, “Behold, I am making all things new."