Epilepsy is relentless. I tell you, it's some effed-up shit.
In summary, Calvin has had at least fifteen seizures in just over two-days' time, so November is on track to be worse than last month was.
When these spates happen, which is all too often, I try hard not to despair. Michael makes attempts to console me by suggesting I not focus on the number of seizures. And while employing that strategy gains me some temporary relief, it's nearly impossible for me to maintain for more than a few minutes.
For families like ours, epilepsy—far more so than Calvin's gross visual impairments, autism, incontinence, cerebral palsy, physical and intellectual disabilities combined—seriously limits our ability to do literally everything. We're held captive by our son's disorder. Epilepsy is also frightening, harrowing, miserable, frustrating, taxing and dreadful. Folks routinely underestimate and misunderstand it. Living with a child who has intractable epilepsy requires hyper-vigilance, grit, focus, stamina, smarts, patience and strength. I don't doubt some folks probably think I'm overbearing and hypercritical, but it's what the job requires. Luckily, as David Bowie might say, I've become immune to their consultations; I'm quite aware of what we're going through. Besides, Calvin is the one who matters most.
One consolation during these seizure-filled spates that have peppered nearly every month for over a dozen years—though ironic in it's grim significance—is knowing I am not alone.
Weird. I just posted on this theme, although your words are far more eloquent than mine. Sigh. I hate it. It's impossible. And it never, absolutely never, gets easier.ReplyDelete
You are definitely not alone. You’re posts and advice are always so helpful.ReplyDelete
Cant imagine how hard it must be for calvin especially if he cannot tell . I have a Son who is Autistic and non verbal . I wish I could take away calvin's pain . Keeping calvin in my thought . Hope this Thanks giving weekend will be relaxing for your family .. Hugs ..ReplyDelete