I’ve spent most of my time with this blog looking backward. I find that reflecting on what’s happened gives me access to insights and even some wisdom. But, for the next couple posts, I’m going to look ahead. Tomorrow, Wednesday, September 13th is Koan’s 10th birthday. Like all children, it doesn’t seem possible that he is that old. I can’t really remember what life was like before he came or even what I was like. Koan really did ruin everything… in the nicest way.
And, while I’m starting to really think more and more about what life will be like 10 years from now (I’ve been asked to write an article for the Iowa Department of Human Right about employment of people with disabilities — I’ll post that here first, of course), tomorrow is a really important day for Koan’s short-term future. Unfortunately, Koan is having more frequent seizures. We’ve seen five seizures in the last six weeks. So, for his 10th birthday, Koan gets to go the University of Iowa Children’s Hospital and visit with the pediatric neurology team.
While for most 10-year-old kids, this would be a real bummer of a way to spend a birthday, Koan will have a great time. He’ll get to take a trip to Iowa City — he loves going there. And, he’ll get to see a lot of new people who will dote on him tell him how cute he is (which he is…). So, he’s going to have fun. As for me, not so much…
The seizures we’ve been seeing lately are a bit different, in terms of intensity, that what we’ve seen over the last couple of years. We had a great run from about the time Koan was four months old til about age six — no seizures at all. When he was around six we started to see about one a quarter. Koan was never diagnosed as a full epileptic, but he did have an abnormal EEG, particularly during his sleep cycle. So, these seizures almost always happen at night or very early in the morning. These events were very intense and rather long (10-15 minutes) grand mal episodes. They would put him out of commission for about 12-18 hours afterwards, too. He would be pale and very lethargic afterward. The last few seizures we’ve seen (the last three in particular) have looked and sounded like what all of the others, but he seems fine after a couple of hours of rest. So, he’s recovering much faster. I’m not sure if that matters at all. But, it is a change.
I really have no idea what the care team will recommend for him. I certainly don’t want to start another run of anticonvulsant medication for him. But, I suspect that’s pretty likely, however. I’m worried that whatever they give him (again if we decided to do this) will change his personality — slow him down — mute his expressions of joy. I’m also concerned that any medication may further hinder his development. And, like most medications, there’s a therapeutic target zone for these drugs that’s pretty hard to stay on top of with growing children. So, there will always be doubt in my mind if we are in the “sweet spot”. I’m honestly hoping we can find a way to not medicate him.
That being said, last spring a colleague I work with on SEAP had her adult child with disabilities (he was in his late twenties) passed away due to complications from a seizure. He was a really high-functioning guy, competitively employed, literate at the 1st grade level — a very important milestone. This was a very unexpected. He, like Koan, was not diagnosed with epilepsy but did have a seizure disorder. So, I know the seizures that Koan is experiencing are nothing to trifle with and need to be treated.
Understandably, I’ve been thinking a lot about the appointment tomorrow. It does seem fitting that we would have it on his 10th birthday. I wonder if we’ll be entering a new chapter in Koan’s story. The circumstances sure feel that way. I suspect tomorrow is just the beginning. And, that’s a daunting thought: tests, medications, uncertainty. But, as Joe Strummer said, “The future is unwritten…” So, I really don’t know what’s going to happen next. As always, we’ll take it a step at a time and a day at a time.