Kai has pretty frequent seizures. Every day, he seizes. It’s been a while since we’ve had a seizure free day, and while we strive to get back there, we manage the best we can in the meantime. We don’t know when they’ll be, they could be caused by anything or everything. We don’t know all Kai’s triggers, so we can’t protect against them.
If you pair the seizure lottery with visits from our nearest and dearest – sometimes, when other people are holding Kai, he’ll seize. Not because of anything they’re doing, it will just happen. I really struggle with what to do in those situations. I can see it coming a mile off – before the person holding him even realises something is amiss, I quietly check the time, and then I’m torn.
Do I move him? I don’t want to move him abruptly, picking him up and taking him back can make it more difficult for Kai, and doing so can be startling for my friend. I don’t want anyone to be alarmed. Do I keep quiet? Sometimes his seizures are subtle, and if you don’t know what’s going on, you might not even notice that a seizure was happening.
Usually, I calmly ask my friend not to be too alarmed and explain that Kai’s having a seizure. We’ll gently move him on his side and count it out, wait for him to recover.
I make sure I look and sound calm, which calms my friend and we gently love on Kai till the seizure is finished, till he’s recovered and then I’ll take him back.
Typically Kai will sleep, and I’ll make an effort to resume our conversation, acknowledging that it happened but firmly moving forward. I don’t want there to be a fuss, this is our everyday. We manage, no fusses required.
I’m always shocked at how raw I feel for Kai when this happens. The reaction is always the same: shock, tampered down alarm, pity, a bit of sadness thrown in. It’s always going to be a bit alarming when Kai seizes in your arms. When you’re not sure what to do, and it’s all so unexpected.
I want to spare Kai that. I want to spare Kai other peoples feelings. I never want him to feel like an object on display (which is why we’re very careful what we share in the name of awareness, and what’s kept private) and I never want him to feel like he’s the centre of a spectacle. I’d like for him to have some dignity, and having seizures in public… it makes it difficult. We can’t hide them or prevent them. I’m also not willing to hide out at home 24/7, so we don’t.
It’s only later that I’ll let myself feel all the raw feelings, the sadness and just straight up unfairness that NKH has delivered to Kai.
Honestly, parenting a special needs baby is a continuous exercise in grieving.