There’s something about enduring this – living without our boy. I personally still like my heart is anchored back in August, and that everything else (seasons, time, life) is just passing me by. I remember feeling similar eight years ago too, that my life is in NICU with my bub, and that anything that happened outside NICU was irrelevant and just, happened without my notice or knowledge. My life then was in this tiny incubator. My life now is a bit… lost. My heart is tethered to my son, who isn’t here anymore. I feel like I’m still standing here, with what’s left of my raggedy, broken teether in my hands, tears streaming down my face, and life is just… happening to other people. It’s happening to others. Me? I’m still back in August, to when I last held my beautiful boy.
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #grief from Instagram: https://instagr.am/p/DBdfnONM0yP/
