Let me start by being totally clear: I’m not pretending to have this all figured out. I’ve cried more about my daughter’s life-threatening medical condition than I’ve cried about anything else. She has a rare genetic difference that affects her eating—she does not eat (she lives off of a feeding tube), and throws up regularly, sometimes without being able to stop.
I thought my life would be one way, with healthy children who needed me only for a while as they learned to do the things at the ages that kids usually do things. But, it’s really not like that. So, yes, I struggle to adjust to my expectations of parenthood—trips to see the primates at Como Zoo, the boredom of playing blocks in the basement—with what our life is actually like—rehabilitative therapies, intermittent hospitalizations, and somehow, along the way, acquiring semi-legit nursing skills.