Then the worst happened: the child whose illness is mentioned in "No Rest for the Wicked, or an Academic Parent" got much sicker. Very. Much. Ever since we moved this child was unwell in some way. Conjunctivitis, unhealed surgical wound, a cold, horrifically chapped lips. It worsened: low-grade fever, mild diarrhea, no eating. Then, whatever was wrong doubled down frighteningly fast with high fevers that popped right back up as soon as the medication wore off, worsening diarrhea, and increased sleeping.
During this time we went to one ER twice, another once, had a follow-up procedure about the unhealed surgery wound from October, and he was cared for as much as possible by a mother who had raised another child to his late teens without killing him. I wailed to my own mother, five hours away, "I don't know what to do now. I don't know!" I was falling apart but surely she would know.
She had no answer. That was the night of the second local ER visit. I could feel that something was deeply awry with this child, already small, who was wasting away before me eyes. He refused to sleep alone. I would pull clean pajamas on his bone-thin legs and arms. I would rock him and snuggle him in the night hoping to pour my own strength into this small person who no one seemed to be able to fix. He didn't even smell right.
It's at this point I should mention that my new place of employment chose to not give me health care though I am currently full time. They like people to be full-time for two terms before giving that prize. For this job we moved to a different county and though I'd made a million calls and spent at least 24 hours on hold, I still did not have everything transferred. I kept trying to enroll the children in CHIP but something was blocking it. I was tired. I was worried. And I was the mercy of the broke-ass American healthcare system. With the assurance, finally, that this child was covered by the state, I found a pediatrician. That man likely saved my three-year old's life. He actually listened to what I said and he helped us.
|The Children's Hospital Fountain at night|
Have you forgotten that I'm in a new job yet? For two of the long hospital trips previously, my Dean did approve leave for me. However, for this visit we were in the hospital for more than a week. Holy of holies, it was Spring Break. What if it hadn't been? What then?
I can't answer that. I don't want to.
We are settling into our new lives as a family of a child with a chronic illness. I read about it. I think about where all the bathrooms are if needed when we go out. I know about medicine logs and keeping track of doses of things. I think harder about what foods I will put on the table at the end of my day. But then my life as an academic tugs at me: What about those conferences? What about committee meetings that run late? What about research and publishing?
Those are the times that I want to scream and never stop. I want to break all the things and set stuff on fire. I can't be the best me there and the best me at home. I can neither stop working nor count on help regularly at the needed levels at home. I know why so many women leave academia now. No matter what we do and are capable of doing at our jobs, everyone expects us to also do the very best at home and with our children. Well, it's too much. I'm doing the best I can do. Everyone is still alive and for now, I still have a job. When that's my mantra to keep going, I worry about myself and all the others out there under conditions I can't even imagine.
It shouldn't be like this. It should not.