When I wrote my notebook post the other day, it totally escaped me that the ten-year anniversary of Jane’s diagnosis day was coming up, even though I wrote about the March 22nd entry from that notebook.
Ten years. This is incomprehensible to me. Scott and I were 28 years old, and Jane was 21 months, and we were a happy little unit right out of a Schoolhouse Rock song. "Three…is a magic number, yes it is. Man and a woman had a little baby, yes they did. It’s a magic number…"
Cozy Queens apartment, with landlords right out of My Big Fat Greek Wedding. Seriously. Mr. Pappas was in his seventies but going so strong as to make your average thirty-year-old appear a slacker. Former restauranteur, amateur woodworker (his first project? a gorgeous grandfather clock), master gardener. Figs and pears abounded in his sliver of backyard. He had a private recording studio in his basement for his original violin compositions. He told me he had been taught to play as a boy by gypsies in Greece. He had a lockbox over the thermostat in our apartment, and he was prone to digging through our garbage to make sure I had properly recycled everything. When he was angry, he shouted; but he was never angry with me, even when I threw out an empty plastic honey jar instead of washing and recycling it.
His wife was ten years younger, busy, bustling, kind yet sharp. She would leave fresh-baked baklava on the stairs leading to our apartment—the same stairs she vacuumed every Saturday morning at precisely 10:25 a.m. I should have asked her for housekeeping lessons, but it never occurred to me. Whenever she stopped in to visit, her glance would dart to the corners of our rooms and I knew she was counting the dust bunnies. Her busy hands could not resist sweeping the crumbs from my table, and I would wonder if her babies had been allowed to make messes at mealtime.
She was a warmhearted woman who adored my baby girl. She urged me many times to leave the baby with her while I did errands or shopping, but I never did. I felt guilty about not giving her the fun of babysitting, but I just plain couldn’t imagine going somewhere, anywhere, without Jane. I was (and remain) a staunch babywearer, and Jane rode all over New York City in my blue-striped sling. The day I met Alice, I was wearing that sling. The day I met most of my new San Diego friends, I was wearing Rilla in the very same sling.
When Jane was 21 months old, my life was full of La Leche League meetings (I was studying to become a leader) and excursions to Manhattan for meetings with my editors. We ran errands for an elderly blind woman on the next street, and we spent hours exploring the small shops and markets in our neighborhood, where you could find dates and homemade sausage and whole skinned goats. Almost every day, we met Alice and her girls for bakery scones, playground adventures, and the noon Mass. They were golden days, and we knew it, Alice and I, with our collective trio of tiny lasses.
And then one day: the bruises, the doctor’s stricken face, the drive to the hospital with our hearts in our throats. Scott’s mother thought he was joking when he called to give her the terrible news. When I called Alice, I was shaking so hard the phone rattled against the wall.
Leukemia. Acute lymphoblastic leukemia, or ALL, which, if you’re a little kid and you have to have leukemia, is the best kind to get. It can be cured. Not always, but often. You’ll have two and a half years of chemo, and your hair will fall out, and you’ll endure a zillion needle-sticks. Your chemo drugs will mess with your heart, your kidneys, your liver. You’ll have ferocious mouth sores, and probably sores at the other end, where the toxic drugs come out. Your immune system will be wiped out, and a garden variety virus will buy you weeks of in-patient time. If you are exposed to chicken pox or shingles, you will be put into isolation, and your parents will spend the next two weeks in terror. The spectres of pneumonia and sepsis will haunt their sleep. With luck, you’ll be too young to know about such dangers, and your main concern will be having to force down another foul dose of prednisone, the bitterest substance on earth.
I was still nursing her when she got sick, and I’m so thankful for that. I kept on nursing her all the way through her high-dose chemo and beyond, and it was big medicine for both of us. Some of the doctors gave me a hard time about it at first; she was almost two. Then she was two. Once, when her nausea was terrible and she couldn’t keep any solid food down at all, a resident told me I shouldn’t breastfeed her because "dairy is very hard on the stomach." I laughed in her face, I couldn’t help it. I told her I wasn’t a cow. Then I spouted facts at her about how breast milk is the most easily digestible substance there is for a human, etc etc etc, and for the next week Jane and I had a game where I would moo at her when she asked to nurse.
We laughed ourselves silly in that interminable string of hospital rooms, though you wouldn’t think there was anything to laugh about when your toddler and all the kids around her were fighting for their lives. We laughed when prednisone gave her a moon-face and a huge appetite, and she would practically push Scott off the bed in her urgency to get him to go get a pizza. Scott considered himself lucky; the little girl next door always got an unbearable craving for lobster on her prednisone weeks, and her parents were beginning to feel a little pinched in the wallet.
It was surreal to think how different Jane’s days were from the golden days of her infancy. No more playground visits, no church, no scones and milk in the bakery with Alice’s girls. No crowd scenes of any kind: she might catch something. I turned our tiny sunroom into a jungle for her, with hydroponic flowers and wooden toys. We were hardly ever home to enjoy it, though; her white count stayed so consistently low that we pretty much lived in the hospital for the first nine months. Scott wore himself out driving back and forth after work. That was also when he took over the laundry—not an enviable job, when your kid is throwing up all the time and your wife only gets over to the Ronald McDonald House for a shower about twice a week.
Prednisone moonface! Ronald McDonald House hair!
When she first got sick, of course I prayed for her to get better. But it was sort of an unarticulated prayer, so much a given that it did not need to be put in words. When I hunted for words, all I could ever come up with was a desperate plea for whatever time she has here to be filled with joy. Chemotherapy means suffering, and I was so afraid that she would spend months in misery and then if…if…if we lost her anyway…the thought was too terrible to finish. But it was there. Please let her time be filled with joy.
What I didn’t know was how much that prayer would rebound to bless me. A child can’t be happy if her mother, her constant companion, is constantly sad. I’ve written about this before, I think. I learned that the only person who could fill Jane’s days with joy was me. Scott was joy when he walked into the room at night, but during the day, happy was up to me. And I found out what a lot of wiser people already knew: act happy, and you become happy. Decide to be joyful, and suddenly you’re seeing joy everywhere.
I’m seriously religious; you know that; and for me the whole hospital experience was an immersion in how real and involved God is, and how joy is the food He wants to feed you.
I started this post this morning, before the day ran away with me, as my days are wont to do. I have the sense that if I keep writing, it will turn into a novel. That’s a book I’d like to write someday. I might have to do like Laura Ingalls Wilder did and wait until I’m sixty to start telling my tales. Right now we’re so busy making them. This morning Jane and I spent hours looking up longitudes and latitudes for our Journey North Mystery Class project, heads together over a spinning globe, losing our pens to Rilla and Wonderboy every five minutes. She laughs a lot, this big girl of mine, eleven and a half years old now, which boggles my mind. Golden-haired, passionate about Redwall, butterflies, and math; tender-hearted, talkative, merry. She throws back her head when she laughs. Her eyes shine. We should have named her Joy.
The Quiet Joy
This is a Direct Quote
December 2014, part the first
Things We’ve Done This Week
When the Saints Go Rushing Out