My son Jack was concerned recently that he had acquired Tetanus. Lockjaw. He locked down on this notion and obsessed about it to the point of not being able to eat or sleep, was having trouble functioning at school and struggling to do anything besides sit in his room and worry, worry, worry about the non chance that he had Tetanus. He trudged to the school nurse three times yesterday concerned that different parts of his body were manifesting symptoms of Tetanus. He came home and whipped his shoes off and threw them on the floor because they were bothering his feet in such a way that the blister created by them meant he might have Tetanus. There was no listening to fact or reason. We tried. His teacher tried. It seemed almost the more we tried to explain and elaborate on the cold hard facts, those being that he had not done anything to put him at risk for Tetanus and nonetheless had a Tetanus shot in 2013, the worse he got. He was knocking on the door of my room periodically to ask if he had Tetanus and I had to repeatedly, calmly reassure the poor kid, that he did, in fact, not, have Tetanus. It was equally hilarious and sad. I had to bite my tongue at times not to giggle, yet one look in his haunted eyes was quite enough to bring me back to full on compassion.
I was honestly stumped. I’ve been dealing with docs and meds and multiple issues related to childrearing kids with TSC for quite some time and it had been a long time since i was completely stumped. As in, I didn’t know which course of action to take, which doctor to call, what to say to his therapist, etc. So, I contacted them all and explained it all to all of them, and risk being thought of as Jack Lacy’s ranting mom. I got answers. Pretty quickly. And in time I was able to piece together what might be going on for Jack.
He’d had a seizure, out of the blue, a few weeks back. He came out of it easily and we were able to backtrack and figure out the probable cause and come up with a treatment plan, which was, to increase his seizure meds. However, despite the cheery treatment plan and increased med, it still freaked Jack out. For good reason. Poor kid is going along with his morning, at his dad’s, excited about going to Boston with his cousins who he rarely sees, and next thing he knows, he’s coming to on the floor and waiting for the ambulance. Scary stuff for a 15 year old. Especially in light of his recent progress therapeutically.
Jack has grown over the course of the last year from having exceptionally intense anger outbursts that landed him in a Community Based Acute Treatment Program twice, to being able to face his inner turmoil and come to a pretty good understanding of himself and others. No small feat for anyone, let alone a kid with some exceptional challenges. This psychosocial growth has also stimulated more inner awareness, which was coming full circle. He kept asking me post seizure, if he was going to die. Now that’s a tough question to explain to a kid. Well, heck, sometimes to anyone, including myself. Simple is best with Jack, and so I told him that no, he was not going to die any time soon. Period. Getting that to stick was work enough, and in hindsight, I am not sure it really did.
The other thing that happened recently, post seizure, was that he visited his docs in Boston and they added two new medications. These are meds that he needs for the manifestations of his TSC so while I was grateful they have these meds, I was a bit chagrined as well, at throwing two new meds into the lovely cocktail of pills he must take daily. Moving forward with these new treatments, Jack seemed to tolerate the change in meds well initially, but thinking back, I bet they made his body feel weird and it once again reminded him of his own mortality. When his sister and father casually made the comment that they hoped everyone was up to date on their Tetanus shots after some jokes about a rusty pitchfork, Jack stored that little nugget about Tetanus away in the back of his head for the culmination of this perfect storm of events that sent him spiraling downward into complete fear land. He called it Tetanus.
I’m happy to report that at this writing, he seems to be climbing out of the rabbit hole of Tetanus fear to the point where he might be glimpsing some light at the top. This morning, he was joking about his shoes not fitting right, and we laughed about his crampy sneaks, and went to get his older ones at his dad’s. He walked into school with a lighter gait than I’d seen in recent days. His teacher and I checked in, and she said she’d felt the shift as well. And of course, his therapist, who has been an incredible piece of Jack’s stabilization, reminded me that Jack also was quite anxious last spring when he had to take antibiotics for strep throat, and he’d come through that. I’d forgotten, as often am rolling day by day with these challenges. This time, however, I’m writing it all down so the next time we are faced with a potential outbreak of Tetanus, I’ll remember to have faith, it’s just a pretty strong wave in the ocean of life.
I’ve been forced to reflect over the last few days on what a perfect example of fear this whole ordeal with the Tetanus represents. It’s irrational fear. He went down a deep rabbit hole and was having a hard time climbing out enough to see the light of day. This seems to almost be our work as a country right now on so many different levels. We’re all facing a bit more fear as a nation than we might have anticipated. We’ve been warned, there’s history after all. But still, we have to learn it on our own. I won’t go down any sort of rabbit hole on that notion, but will end this little reflection with the message of hope. Hope that we can all learn from Jack and his riding the Tetanus wave of fear. It didn’t drag him completely under, and sometimes we all need a little shot of Tetanus to come to see the light.