I lost my hair tie overnight and now the static electricity wins. It’s quiet here in my chair-recliner- bed (as if) with my nightstand ledge watching the sunrise over Emory. Our girl is doing well. Numbers returning to her new normal and talk of going home if we can get the cultures back and confirm an oral antibiotic will work on that type of infection.
It’s a harrowing and humbling experience helping your young adult child person/s move into adulthood with complex medical needs. This stay has been a fire drill in adult care, not having had a planned transition from CHOA as we would have preferred.
Sometimes things don’t go your way. That’s nothing new to us. It’s why a lot of things we go through shock our family and friends but we barely register. It’s how we’ve been able to endure the last 20 years of trauma and keep moving… by knowing stress, trauma and potential tragedy are around the corner. That doesn’t mean we look for it or live like we are waiting for it, we just know it will come. There’s peace in that knowledge. It can be hard for people to understand that for us, everyone in our family just has to keep moving. It’s why we rarely change plans when something health-related happens unless we absolutely have to. It’s why we keep to personal life happening and work and meetings and trips. If we didn’t, it’s like we would succumb to letting this – these diseases, the stress and uncertainly and fear – control us at whim. And Julian and I have always refused to live that way. We mess up a lot, but that? Living in the moment next to fear? That we can do.
Amazing friends and family who love us and help, tenacity and a helluva sense of humor don’t hurt either.
