Of Winds and Wishes

Can it be? Can it be that Santa Ana conditions somehow decrease Michael's seizure threshold? I have always thought (based on anecdotal experience-you know- Mom theories) that weather changes, altitude and time zone changes might be seizure triggers in Michael's case. Anyhow...this morning Michael had a seizure in his sleep. Barry wrote the time and length in the seizure journal and he also noted " Santa Ana conditions". I flipped through the notebook to check when the last seizure had occurred and next to the time and length of the seizure a month ago, Barry had noted "Santa Ana winds". Maybe. Maybe not. There are some triggers we can be pretty certain about- stress, for example- and we can take some measures to reduce it. There are other possible triggers that we have noted with respect to Michael but some are simply unavoidable. And that's how it is with epilepsy. That's how it is. For us.

This morning's recovery was swift. Michael slept for a couple of hours post-seizure and came downstairs with an overflowing laundry basket which he proceeded to throw into our frontloading washer piece by piece as he related that he often does so "like pitching a softball" to make this particular chore "more fun". All the while he was grinning from ear to ear. Vintage Michael.  So...we're good. Seizure's done, life goes on. Onto reading and studying to get through this final course to get the degree he has so coveted. Is that a stressor? Yes.  Hell yes. But we deal...we just deal with it.

So pretty much this is the rhythm of our lives. A seizure. Move on. Do the best we can to minimize triggers we're aware of and brace for the inevitable seizure that will occur again. In a day, in a week, in a month. Oh what I wouldn't  give to say in a year! But we're not there. Yet.

Epilepsy awareness month is in November. As I've said before, I'm not certain that increasing awareness results in more research funding, compassion, or better treatment options. Nevertheless, many of us persist in this awareness campaign hoping that it might make a difference. What if one kid in one school stops bullying the kid who has seizures, and instead, sits with him at lunch? What if a handful of people with plenty of discretionary spending resources are moved to donate to research that discovers the cause of SUDEP (Sudden Unexpected Death in Epilepsy) and develops measures to prevent it? What if a young neuroscientist is moved so much by learning about the devastating epilepsies that they commit their career to unraveling the mysteries of syndromes such as Dravet and developing treatments that enable children to thrive and grow into adulthood? What if, indeed!

So...we persist. For the what ifs. For the hope of the future. For Michael and for so many others.