But there was no one. It was too early for physio, for that kind of support. We had nurses who were just beginning to drop by, but otherwise, we were just trying to figure it out. Now I can see that it would be way too early, and that there were other ways. I guess the position change might have been good for him, but his poor sweet body couldn’t lift his head.
He would, eventually. I was so scared he’d never gain head control (many kids can’t) but he did, in his way. I wish I’d known then what I do know. That it would come, but if it doesn’t, that’s okay. That neurotypical progress (head holding, sitting, walking) is not the goal, here. Happiness, enjoyment, maintenance of gains he made at his own pace, would be better. No need to push and push and push.
Just enjoy him, love him. Make more time for him, find the things that work for him.
That is what I would have said. 2016 me would have brushed that off, because it’s not an easy thing to hear. Accept your child is disabled, meet him where he is, and building in moments of happiness and joy for him.
In today, my heart hurts. I miss him. Those words also feel like nothing words (because obviously). But the DEPTH to which my heart hurts and how much I miss him. You could blow a hole right though the earth and measure through the middle to the otherside of the solar system and my heart would say oh yeah, that tracks. Today is hard.
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit #fundraising #teamMikaere #theMikaereFoundation from Instagram: https://instagr.am/p/DCyktVcyhQi/
