One year ago today, I brought Clio to the ER of our local hospital with a fever of 104.5. Several hours later, we found ourselves at a hospital in downtown Boston, being told that it was 99% certain she had leukemia.
As I posted a few weeks ago, it’s been difficult looking back at this time last year, when her symptoms were emerging and worsening, but when we had no idea that she was, basically, dying.
This past week has been even harder. Memories from the days before Clio’s diagnosis and the early weeks of her treatment have been resurfacing unbidden, and feeling quite raw.
It doesn’t help that many of the ordinary events of last year have repeated themselves this year:
Earlier this week, I was at my aunt’s house in Connecticut, where we’d been with our family the prior week last year. I sat on the couch with her, and we remembered how Clio had lain there crying at one point because her legs hurt so much. I’d massaged them, given her ice, given her Advil. (We saw our pediatrician for a second time two days later, and I demanded we be referred to a specialist.)
Also early this week, when it was hot, in the low 90s — I thought to myself, God, I hate the heat. Was it this hot last summer? And then I remember: I spent a large portion of last summer in an air conditioned hospital, hermetically sealed away from the weather, the world.
Thursday night, we went up the street to the same fireworks display, with the same friends, as we did last year (although last year I was actually up in Maine, doing a reading). Last year, Alastair had to leave with a screaming Clio because she suddenly got a huge hive on her leg. Hives were one of the mysterious symptoms that developed in the last week before she was diagnosed.
Today, the same “Family Fun Day” as last year is happening up the street — the one that Elsa went to but that Clio missed because she and I were at the ER waiting for her blood test and ultrasound results.
I’m remembering the first, awful, sleepless night in the hospital. Almost fainting when I got up to use the bathroom. Climbing into be next to Clio, briefly, then going back to my own bed because it was too painful.
I’m remembering the reverse nightmare feeling of waking up in the hospital the second morning — this time in the spartan little cell of a parent room we were given, while Alastair slept in Clio’s room, so I could get some rest. Waking up in that room, remembering the reality of where I was, and what was happening, is what I imagine it feels like to wake up on your first morning in jail. I cried, and I think I said aloud, I don’t want to be here.
I’m remembering holding Alastair when he finally broke down and cried, after we watched Clio go under sedation for an MRI.
I’m remembering the face of the surgeon — who bore a bit of a resemblance to Alastair, in fact — who put in Clio’s port-a-cath. He told us that he had a little girl who looked just like Clio. In the operating room, when I started to cry — right at the moment when Clio had gone fully under anesthesia, and it was time for me to go — I caught him looking at me and we made brief eye contact. (What was he thinking? Why was he looking? Was it because Clio looked like his little girl? Did I look like his wife? Didn’t most mothers — and fathers — cry?) The nurse put her arm around me and walked me out of the room.
I’m remembering the sensory overload of the times I wasn’t in the hospital with Clio over the summer — wandering, dazed through the crowded, colorful, strange-smelling chaos of the Chinatown neighborhood the hospital was in, over to Downtown Crossing and the perfume-scented, new-clothes quiet of Macy’s, where I bought extra underwear when I was running out.
I’m remembering the dawning realization over the next few weeks of how drastically our lives had changed, in just a matter of weeks.
But I’m trying also to remember some of the good stuff: The way our friends and family and readers/listeners rallied for us. The nurses and doctors we came to trust and appreciate, and to have a pleasant rapport with. The sweetness of reading the Ramona books to Clio in her room, and listening to Alastair and her sing together. The enthusiasm and excitement of Elsa when she came to visit (riding the tricycles around the nurse’s station on the floor and “riding” the hospital bed with Clio were highlights). The junk food we enjoyed without guilt. The lullaby CD we put on at night as Clio fell asleep.
And I’m trying to be grateful for the fact that we’re here, now — a year out, almost halfway through Clio’s treatment, and feeling mostly hopeful. Oh yeah, and it’s official: We’re going to Disney World at some point in October. We’ll be staying at this insanely magical-for-kids-looking place.
We’ve met wonderful people. We’ve gotten a mini-medical education. We’ve learned to be more flexible and resilient. We’ve had moments of deep pain and great joy.
Do I wish life hadn’t sent us on this
journey crappy little boat trip? Well, yeah. Sure. But life goes on. And there’s been a lot of good to balance out the bad.
Thanks for coming along for the ride — and for the strength and support you’ve given our family.