Gage update

I don’t have a clever title or organized thoughts for this post, but wanted to share some updates about Gage because we’ve had some recent changes. Last week was his parent teacher conference. I’m so proud of how hard my boy works in school and I love that he loves it. He’s got an AMAZING team of people there with him each day and I am incredibly grateful. I got to learn about his favorite things to do in the classroom, like wishing his friends well, or choosing from Mr. Potato Head if he’s going to commit to having watchful eyes or listening ears.

I adore his teacher and her obvious love for each one of her students. Part of her being such an incredible teacher is recognizing Gage’s needs as a whole person, and not just a student in her classroom. We talked about the increase in seizure activity that Gage has had since school started. It has all been at home and not at school, thankfully, but we both suspect that maybe exhausting school days and all the stimulation in the classroom could be contributing factors. Based on what we’ve seen, we’ve decided to shorten Gage’s school days to end at noon each day.

While it feels like the right choice for us, it’s still a hard decision to come to because I know how much Gage loves school. After such a great start to all the adjustments of a new school, riding the bus for the first time, and getting used to a new routine, it seems like a step backwards. But I always said we’d take the lead from him and if he needed a change, he would let us know. God, how I wish his precious little body had better way to communicate that we’ve taken on too much.

Along with a shorter school day, we are taking a hiatus from speech therapy at MSU. Our 5 pm appointment time has always been a challenge and we’ve already missed several days this semester because of seizures in the afternoon or illness. Even on a good day, it’s hard for Gage to give his best when he’s already worn out from a full day by that time. Making the choice to stop that therapy was especially hard, because I feel like we’re not following through with a commitment we made to work with their students. The speech clinic there has been nothing short of amazing and served us so well over the last couple years – it’s thanks to them that Gage even has his communication device. So I hate to put an early end to something I value so much. But the clinic director reminded me on the phone earlier this week that real life doesn’t operate on semesters and they understand.

Earlier I said that Gage’s seizures have all been at home, not school, but that’s not entirely true. Last week on the drive home from swim therapy, he had a seizure while we were in the car. It was one of my fears realized, us being the only two in the vehicle and having to pull over and scramble to get him out of his car seat as cars whizzed by on a busy highway. I was trying to reassure Gage the entire time, like I always do, but there was no comfort whatsoever in my shaky, panicky voice. After things subsided, I pulled off the road to a nearby park where Gage slept in my arms until a second seizure woke him from sleep and he vomited. At home that night he was in Evan’s arms at the dinner table when every muscle in his body became extremely rigid and from his clenched jaw scared cries escaped. I carried him to our bedroom, away from Caleb, and planned to administer rescue meds which Evan quickly delivered to me. Before I could, his body relaxed and he quickly calmed. My prayers that followed were both of thanksgiving that he was ok, and desperate pleas for help.

I don’t write about this experience to worry or depress anyone, or seek sympathy. But the reality is that things get scary sometimes. There are so many people in our lives who love and care deeply about Gage, who I believe truly want to know what’s going on, so I’m willing to share, albeit with some hesitation. Even if it’s easier, I don’t have to gloss over the details, even the painful ones. At the same time, I also believe that speaking about the struggle can be it’s own form of testimony. No, in this moment, we aren’t celebrating a triumph. But our faith is still there, as an underlying foundation. God has not forsaken us, and he is placing people in our lives at exactly the right moment, to help us pull through–texts from friends checking in, powerful words of prayers, truth in scripture shared, and friends on our doorstep at quite literally the perfect time. Through it all, I love the way God loves us and I love the people he uses on earth to make us feel it.

At the end of the week, we have an appointment with Gage’s neurologist. We’re in frequent communication with him, and we’ve recently increased his daily dose of seizure medication. If we don’t see improvements, we’ll make another change or switch. I feel like I’ve been piling up a list of sooooo many things to talk about, and the cynical side of me wonders if I’ll leave the appointment without any answers or a clear direction for next steps. It just seems like that’s the nature of the beast that epilepsy is–it leaves you guessing, which all too often correlates with living in fear. There’s not always a clear answer to questions of why or how. I would love it if you would join me in praying that this appointment will be productive and helpful. I also covet BOLD PRAYERS that Gage will be seizure free. I don’t know what it looks like, but I hope that we can be on a path to that freedom.