Lets not just stand around my baby crying
January 2, 2013 10:33 PM Subscribe
My 1.5 week old baby was born a month early and is being treated for an extremely rare, incurable genetic disorder discovered last weekend via newborn screening. I haven't told anyone beyond my parents, and in the meantime everyone keeps offering to help with/visit the baby. What should I do with them? I can't bear to have the same horrible conversation over and over.
posted by Maarika to human relations (30 answers total) 6 users marked this as a favorite
My husband and I are scared and devastated, and there are more questions than answers about the baby's future at this point. I can't talk to kind medical professionals about how things are going without crying, let alone family and friends. My parents keep asking for updates that I don't have and want to come over all the time. All the normal "ask people to bring over food and/or clean" newborn advice runs counter to my gut reaction of just wanting peace and quiet at home in-between the constant doctors appointments, surprise hospital trips, and sleep-deprived cluster feeding. Plus, having a medically-fragile infant around people during flu season is terrifying (especially when any fever or vomiting for the rest of my son's life now equals an instant trip to the ER).
I know we shouldn't try to go at it alone, but that seems like the easier path right now. What can we do? How do I take people up on their offers of help when I really want them to back off? How did you deal with family/friends and a medically-fragile baby?