little celebration

Today marks eleven weeks of seizure freedom for my sweet son Calvin. It isn't his longest stint ever; that record was nineteen weeks long—or nearly four and a half months—in the late summer of 2022. But I think this is one of his top three or four longest stretches without any seizures since he first began having them when he was just eighteen months old, shortly after he said "mama" for the first and only time in his life.

Long seizure-free stints usually mean Calvin misses very little school, which means I have more time for myself to do what I want and need to do. Moreover, I'm not racked with anxiety and tension looking over my shoulder all day long just waiting for the next frightening seizure to strike. To be mostly rid of that feeling is liberating to say the least.

It's also notable that Calvin has seemed very content and happy for several months. He is still uber restless due to the akathisia he suffers because of other epilepsy drugs, namely benzodiazepines, which I believe permanently harmed his developing brain.

But that Calvin smiles—when he gets on and off of his school bus, when he enters, makes his way through, and exits the grocery store, when we put him to bed and smother him with kisses—is not something that I take for granted. I remember years when I rarely saw Calvin smile, back when he was reduced to a little zombie, his brain awash with heavily-sedating drugs. I feared he might never smile again.

Calvin is also sleeping better these past several months, sometimes as long as twelve hours. He does still sometimes wake in the middle of the night and might have trouble getting back to sleep, but more often than not it is my impression that his sleep is fairly sound compared with in the past.

So, with all this in mind, I am having my own little celebration today—of Calvin's seizure-free stint, of spring, more daylight, and Calvin being easier and more enjoyable to take care of in a myriad of ways.

Calvin wearing his cool hand-me-downs