The realities of going through each day, of witnessing tiny segments of his life slowly and in detail have been both a balm, but also hard. These days were mundane, and I can feel it when I look back at these. I’m also terrified, because there will come a day where I didn’t take a photo of him and then what will I do on that day? Even worse, we’ll come to a point where there are no more photos ever. I hate that. I hate that so much.
He looks so little here. He’s just over a month old, 46 days. This baby. He is so very loved. I wish there was more time with him. I’m so sad there is not.
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit #fundraising #teamMikaere #theMikaereFoundation from Instagram: https://instagr.am/p/DC1JfwyvMWo/