After Ayce was born he was taken immediately to a Neonatal Intensive Care Unit where he was on life support and receiving one-on-one care 24 hours a day. There we were given a crash course in what it means to be a parent to a child with special needs. The fear, the waiting, the medical terminology, the scary machines, and the joy in the little things like being able to hold our child (day five), having him breathe on his own (also day five), or seeing him open his eyes (day six). Fairly quickly we became used to asking nurses or doctors before making any decisions about Ayce’s care.
It took a long time to “de-institutionalize” and become his primary caregiver. It still feels odd to make decisions without consulting anyone, but I am happy to say that after four months, Ayce and I are slowly getting into a groove: If I decide I want to bathe him directly after he eats, I can! If I decide to cancel his pediatrician appointment because I don’t feel like driving, I can do that too. It’s amazing how the things that other parents take for granted are actually huge privileges in my life. I have to admit that sometimes I feel resentful of parents who can just flippantly choose formula brands without first talking to a nutritionist, or buy a high chair without consulting an occupational therapist, or go on holiday without considering the proximity to children’s hospitals, but it’s getting easier. After seven months I feel I can safely say that I am OK with How We Live Now. It’s just what I do.