Today, right this very minute? Our youngest is sprawled out on Sam just like this. She’s 15 months right now. The difference between parenting an NKH kid and a neurotypical kid is stark. Having two other kids doesn’t replace Kai, our eldest. He made us a family, he held us together. Our sweet boy.
Our other two – their paths are different. They’re going to grow old and independent and, one day, navigate their lives away from ours. But we always knew that Kai’s live would be intertwined with ours. That his path would only veer away from ours in death.
I hate that we’re here. I miss him so very very much.
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DDFT8msx6vc/
