There was a giant kerfulfle in our NKH facebook group the other day. Feelings were hurt, dramatic proclamations were made, some people left the group. I didn’t dive in, knowing full well that there was nothing I could say that would ease all the grief or anger. We’re too remote, separated by a keyboard and screen and our feelings about NKH are big, and personal.
At the heart of it, it was about grace with the different severities. See, NKH has a sliding scale of severity which is loosely split into groups with the unfortunate names ‘mild’ and ‘severe’.
The “mild” kids, they walk and eat and can communicate. The severe kids, they don’t. That’s what the grouping, from the outside, looks like. The different kinds of lives they lead. Both sides are still worlds away from a nuero-typical child, and we still are bound by the complexities that every NKH child shares, but there you have it.
But what you can’t know is that while the severe kids clearly have a tough time of it, the mild kids are having a different, but equally tough time of it. Of behavioural problems and rage and self harming and aggression. “Mild” is not really mild. It’s horrific.
And I know this because in our group some people are okay with sharing openly (sharing is such a personal thing, so I’m grateful some people want to share, but I don’t feel like everyone needs to). So I know there is pain and fear and grief for the mild families because there are 2-3 families that share and tell the rest of us their stories.
That was a tough thing for me to learn – because when Mikaere was born I heard the severe diagnosis, and I saw photos of the mild NKH kids and I had a surge of hope. That Mikaere might be able to live, really live, and enjoy life. To be able to eat ice cream and run through grass and swim in the summer and sing along to bad pop songs. To have choice and communicate.
I also saw that it was unlikely for Mikaere. Because he was in a seizure coma, and we were being told he wouldn’t live, and if he did, his brain was likely to have so much damage he’d have severe severe disabilities.
Here’s the thing though. They were wrong, and Mikaere lived. As it stands right now Mikaere does more than some severe kids. And way way way less than some of the mild kids. Where does he sit on the spectrum? What kind of expectations should we be expecting for him? What kind life? Is the kind of with biting and aggression and rage? Is the kind where he’ll never be able to hold his head up, forever stationary?
It’s tough. NKH is tough regardless of severity. In terms of Mikaere… we actually don’t know where he’ll end up. We know that NKH is a progressive disorder – so it might mean he does really well, learns to hold his head up, sit by himself. hold his toys and eat all the things (Mikaere’s current goals we’re working towards) only to fall apart as the NKH progresses.
Or. Or we might get loads of funding and Prof. Nick Greene and his team might be able to push through with all the checks and requirements and there will be a clinical trial. Which Mikaere might be eligible for. Which might mean the NKH is cured. We might spend years and years years working on skills despite the damage it’s caused, but it wouldn’t be progressive anymore. Mikaere might live.
Maybe. I have hope still.