On losing a little bumblebee to NKH

So they say that bumblebee’s aren’t designed to fly, that their bodies are too heavy for their little wings - wings that aren’t meant to enable flight according to the rules of aerodynamics. And yet, they fly. They don’t know they’re not meant to fly, they just keep on keeping on.

Because of this, the NKH community has adopted the bumble bee as one of their own, a little reminder to keep on keeping on. Every NKH parent is told their babies aren’t meant to live, and yet they do. I talked before about how Kai could go either way: Kai doesn't know his brain is broken, he doesn’t know that he’s got a little glycine problem messing about with his brain development. He doesn’t know that his disorder is terminal. 

Today one of our NKH kids passed away. A beautiful little four year old who deserves to be remembered. He deserved more time, more life. He deserved so much more than NKH allowed him.

This beautiful little guy is the first NKH kid to pass since Kai was born, and I won’t lie, I’m devastated. I didn't know him personally. I don't know his parents. I can't even imagine their grief.

But I do know it could easily have been Kai, and one day I’m sure it will be. I’m so angry - I feel like the research is SO CLOSE. I feel like we just need to hold out, protect his brain as much as we can. That hope is on the horizon. 

When an NKH kids passes, one of the phrases we say use is ‘Fly high.’  It's all so heartbreaking, and today I'm loving on Kai a bit more than usual.

 

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