This is not how I thought the summer would go: full of doctor appointments and hospital visits. I assumed that the neurologist we saw four days after school got out would have all the answers. I suspected my daughter’s headaches were allergy-related: the cats, mold in the walls, food-triggered like my father-in-law’s. We would find the cause and get her some medicine that worked and she would attend theater camps all summer and I would write.
She made it four days before she couldn’t get out of bed any more.
This week alone, we’ve seen three doctors. The first showed us the results of my daughter’s MRI. No abnormalities, thank goodness, but now I’ve seen her brain and her eyes staring out from inside a cage of metal.
There’s still no certain cause of the headaches that have trapped her dark rooms all summer. It’s probably hormones and she’ll probably outgrow them, which is where we started in December.
The doctors have prescribed a number of hardcore pharmaceuticals and biofeedback counseling. School begins again in two weeks. I hope desperately that the new regimen will do the trick. She needs to get back to living. I need to get back to work.
I haven’t written anything worth mentioning in months. I have the concentration of a gnat. I’ve barely been out of the house or away from my desk, whittling the hours away with social media and research. I need a break. I need to work. I need life to go back to normal.
My only experience with serious care-taking was almost 25 years ago, when Blair died at his home of AIDS. I was only there for the last two weeks of around-the-clock morphine pump pushing. Being available 24/7 for months on end, counting pills and recording pain levels, putting a good face of terrifying conversations, standing in an icy room to comfort my weeping child as she slides into an MRI tube…
Not being able to make things better, not being able to see the end coming, is awful.
And yet I know how lucky we are. When we faced the MRI, I was certain there wasn’t anything structurally wrong with my daughter’s head. I knew she didn’t have brain cancer, since her headaches attack and ease, moving around her skull. I was grateful to have that knowledge, when I knew other mothers had stood where I was standing, hand on their children’s knees, giving comfort through a thin cotton sheet. My daughter isn’t dying. She’s only suffering and there have been good days, days were we went to Hot Topic or out for ice cream, moments when she felt like singing again or I heard her laugh.
Bodies are stupid and fragile and it’s so hard to see someone you love in pain. I am worn out with hoping this will all be over soon.
I already know that every day aboveground is a precious gift. I know the sun will shine again, probably in September. Better days are coming, if we don’t all perish in a nuclear fireball first.