When I sweep my child’s room, the debris is syringes and alcohol pads. Empty medicine vials and IV paraphernalia. Paper tape and hospital admission bands. And I sit on the floor and cry.
My 17-year-old daughter has two rare diseases that no one knows much about. She has some sort of immunodeficiency which is causing her immune system to be constantly fighting, yet she is always sick. She gets infections that doctors rarely see, and often it’s more than one infection at a time.
Monday we saw our third geneticist. Wednesday we traveled to an infusion center where she had an anaphylactic reaction to the treatment so they had to stop it. That’s right—she’s allergic to every potential treatment we’ve tried so far. Friday is yet more testing at the hospital.
I spend my time coordinating prescription refills, home health nursing, doctor’s appointments, hospital visits, surgeries, and experimental meds.
My daughter’s life is so different than an average high schooler’s, and because of that, so is mine. Neighbors talk about school and garbage pick-up, holiday prep, and new shoes. And I just can’t relate. We live in a different world.
Instead of looking at prom dresses, I’m ordering her a personalized hospital gown. Her senior adviser wants to discuss colleges, but we are busy researching hospitals and treatment centers.
I don’t know how to be this person. I’ve thrived during challenges before: I graduated nursing school as a single mom of three while finding time to be Student President and write for the school paper. Now I have no guidebook. No notes to memorize, and no test to ace.
I see my Facebook friends post about a book chain and I think, Oh that would be fun, but then I remember my life and laugh/cry instead. More likely we’ll be spending that time at urgent care or a doctor’s office. There are no plans, ever.
Moms ask me for play dates and I don’t even know how to explain my life, with the constant high alert of a medical emergency about to happen.
I used to be so organized. Now we live minute to minute. Infection to infection. We transferred her care to the better city hospital, which adds two hours to every trip. Last week I had work and household chores planned. We ended up twice at urgent care and a 10-hour trip to the ER. She missed four out of the five days of school.
All I want for Hanukkah is a cure. To be worrying about teenage drama and messy rooms and curfews, not feeding tubes and central lines and infections and anaphylaxis. I want our decisions on how to fill her gap year to be the most important consideration we have to worry about.
May we all be blessed with good health for ourselves and our families. And in the absence of that, at least may we have the wisdom to navigate this world.
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