I remember being ecstatic – to have my baby, and privacy and somewhere to sit that wasn’t an awful NICU armchair. To be able to have more than two people bedside (!) and to EAT FOOD in the same room as the baby. We brought blankets and pillows from home and while it still very much was a hospital, it felt like a different world away from SCBU, and even more so than ITU.
…. It’s been a month since I’ve been posting these look-backs. Remembering in excruciating detail the early days. It’s been eight years since he was actaully a month old, and four months since he died. Memories and photos and videos don’t feel like enough and I hate that’s all that we have now. He was here and he mattered, and now he is not here and I hope he’s pain free and happy (as much someone who is dead can be pain free and happy, I guess).
A friend was sharing about her grief, and how for a long time she felt like a husk of herself. Me too. Except now and here.
I feel lucky that I have two other children and a husband and friends and family who love me, who have tethers to my heart, holding me to today, and these days moving forward. I now have a lot of compassion for people who, in their grief, turn to other means to cope. I can see how disassociation would be a comfort and I can see how it could be so bad being not alive would be a preferable option.
Anyway. Grief is pretty personal. Instead of all the not good things, I’m throwing my feelings to the internet. <3 for being here. I appreciate you. #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder from Instagram: https://instagr.am/p/DCOhlC8NiMP/
