Like I do every weekend morning I found Karin and Liam asleep in Liam’s bed last Saturday morning when I woke up. Unfortunately it had only been a short while after they had finally drifted off.
“We didn’t have a very good night.” Karin said when she woke up. Liam had been pretty restless for me the night before too. He spent the night looking like he was just about to sleep but something was keeping him from getting there. I thought he had finally gone out at 4am when Karin and I traded posts. I guess I was wrong.
“I had to spray him.” She said. It wasn’t the way I wanted our weekend to start.
The Spray. The versed (or Midazolam) sprayed into the nose to break the really strong seizures. It’s our antitode to the storms that Liam can’t break on his own. We also have Diastat if the versed doesn’t work. It’s rare to see Liam cry because of or during a seizure. He has however cried every time the nasal versed nozzle is placed up his nose and the first mist given. Whether the long-term side effects of his daily seizure prevention meds, or the short-term emergency meds we use to stop them when they can’t be controlled, it isn’t the seizure that he seems to feel the pain of, it’s the cure.
We’re in a good place with his seizures now. The reason that hearing he had gotten sprayed on Saturday hurt so much was because he hadn’t needed it in weeks. Before that it had been months. There have been times in Liam’s life where we have had to do that three and four times a day. When the seizure minutes in a day outnumbered the seizure-free. The hard part is knowing that those times may (and probably will) return.
Even when you find a regimen that works, weight gain makes renders it fleeting, or the side effects of long-term use set in, or tolerance builds and effectiveness wanes. New meds are tried, new risks are weighed. Seizures change. They evolve. They break through. New meds are tried, new risks are weighed.
It’s easy to fall into the trap of thinking that we’ve got this thing all figured out. That we’re the grizzled old veterans of this special needs game. The wibbly wobbly timey wimey aspect to months and months spent in the hospital making them seem like dog years of parenting, every month feeling like seven. We’re only rookies to the sport though. Liam hasn’t even started kindergarten. Which is why I truly value the friendships we have made both in real life, and online from all over the country, with families who have children in their early teens all the way to early twenties with special needs, to show us the way through the big leagues, to be Crash Davis’s to our Nuke Laloosh.
I’ve mentioned her here before so I expect that every single one of you listened to me and have been reading my friend Elizabeth’s blog here. Reading her blog in all its honesty makes any reader feel like you’re already her close personal friend, and of all the many friends around the world that this blog has given me, Elizabeth is the only one who I have ever spoken to on the phone. I don’t email or comment on her blog nearly enough but she’s always there with a kind word or a witty joke on mine, (along with just the right amount of profanity when the comment needs it). She’s good people.
Elizabeth’s daughter Sophie has recently had a stretch of two weeks without a seizure. It was the first time that has happened in 19 years. After a lifetime of many different (at least 17 if I recall reading) powerful drugs with serious side effects, Elizabeth and Sophie have found something that has helped bring her two seizure free weeks for the first time in 19 years. I know I said it already. It bears repeating.
I don’t know what 19 years of this feels like. I know what 5 years of this feels like. I know what two weeks feels like. I know what ten minutes feels like. The ten minutes between looking at the clock when it starts and deciding to push down on the nozzle for The Spray. I can’t even imagine what 19 years of this feels like. I don’t want to.
But maybe I won’t have to know what 19 years of this feels like. Maybe, thanks to people and families like Elizabeth’s sharing their own stories on blogs, radio and TV interviews, and newspaper articles like this one featuring Sophie, our nineteen years will have greater access to a better way to keep seizures away. A simpler way. A safer way than the harmful drugs I continue to give to Liam every day. It’s not science that is holding back the research, testing, and access necessary to give Liam more relief from his seizures in this lifetime. It’s politics. It’s not because it doesn’t work that we haven’t heard real statistics and started spreading it to every child or adult that it could help, it’s because insurance and pharmaceutical companies haven’t yet figured out how to monetize it.
Luckily Liam, Karin and I happen to live in a state where medical marijuana is legal. Luckily, we have a relationship with Liam’s amazing neurologist in which I won’t feel uncomfortable bringing up our interest in this (seriously, we have assembled a pretty kick-ass team of specialists around Liam but his neurologist is like the all-star, and we’re not at a point yet where we would jump into this without his blessing and help). Luckily we have friends like Elizabeth who show us the uncertain road ahead by taking the time and effort to turn back for us and let us know how they got there.
I fear running out of options. I understand that Liam will always live with seizures. When the devastating side effects get to be too big a risk, or his tolerance grows too strong for all the drugs that used to work. What then?
Well you see, luckily,there’s this plant… Listen, I’m not saying we’re going to run out tomorrow to try to score Liam a big bag of grass and see what happens, what I am saying is that it’s another option and knowing what I know now, Liam won’t have to wait 19 years to try it.