But it is still hard. It doesn’t happen all the time, but sometimes, out of nowhere I’ll see a small baby much younger than Kai doing something he can’t do. Like hold up his head. Or make eye contact and smile. Or put their fingers in their mouth. Or child zipping by on the back of a scooter, big grin and lots of noise. A toddler holding their parents hands as they stumble about.
Small, tiny little things. And it’ll be like a punch to the face. I’ll smile, and hold it. But my eyes will be teary, and I’ll look away.
And each time, I’m mentally scanning the differences between Kai and a nuero-typical baby. I imagine what it might have been like if he didn’t have seizures, or brain damage. What it would have been like if he was a carrier instead of affected. The things we’d be able to do, normal things like holidays and have babysitters who aren’t nurses and we’d be weaning with finger foods instead of worrying about aspirating. We’d be able to go baby sensory classes and swimming and on public transport and not worry about illnesses or seizures, or very very bad days. We’d be able to go on holiday. We’d be able to go home to New Zealand.
It’s a trap I fall into, this imaging a different life for ourselves. And it’s hard to come back and realise we’ll never have that. There is nothing I can do to make that happen. I honestly thought I’d pushed through – so I’m surprised that this grief about Kai’s ability is cyclic. That it continuously comes around again and again. It’s debilitating, hey.
So I look at this baby who is doing something Kai can’t and I try to breathe through it. And I tell myself that Kai is on a different path and is quite happy going at his own pace in his own direction. I hate it though. And breathing through it doesn’t always cut it, and sometimes I’ll rage at NKH instead. Stupid different path. Stupid NKH.
It’s usually at this point in my head where I turn from ranting to pleading in my head. Please Nick Greene. Please work your magic and push forward for a clinical trial that will save my baby. Please fancy researchers. Make progress today so we can have a tomorrow with Kai. Please find a cure.
Because that’s where our hope is, as always. In the research. In a cure.
We hope. And we love on Kai so hard, like there’s no tomorrow. I still smile at the babies, but as Kai gets older it’s harder than I anticipated.