After I finally gave up on bringing my post to an actual close last night, and just went ahead and put it up, I clicked over to see what Scott had written about the day. I knew there would be something. As usual, he blows me away. And he doesn’t take ten pages to do it, either.

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 Waldorf 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.

Midwestern Lodestar is hosting this month’s Carnival of Children’s Literature. The CCL has been going strong for over a year now. I always look forward to exploring a new collection of posts. Perusing my archives yesterday, I was mildly chagrined to realize that I haven’t posted anything about children’s books all month. I guess I’ve been too busy reading books and writing books to write about, um, reading books or writing books.

I am reading a lot of books these days; my drafts file is bursting with reviews-in-progress. Maybe after I get my taxes done, I’ll have a chance to finish up some of those posts. I’m in one of those moods where I feel like everything needs tweaking. The housework schedule, the rhythm of our days, the reading lists. The pansies on my patio are looking ragged; time to retire them and find out what San Diego folks plant in March. Back in Virginia, we’d be trying to get our peas into the ground right about now.

I was digging through a box in the garage and found another stash of old notebooks. I have dozens of these small spiral notebooks stored away. For years, I have carried one around in my diaper bag or purse. Because, you know, I might die if I got stuck sitting somewhere with nothing to write on. This particular batch takes me waaay back. My goodness. When I was packing for the move last fall, I found the journal I began when Jane was first diagnosed with cancer in 1997. Alice brought it to the hospital on her Easter visit, about a week after the diagnosis. It was a nice bound, lined, hardcover journal from a bookstore. The one I found in the garage yesterday is the cheap, beat-up spiral I was using at the time of the diagnosis. It is bizarre to look back at how abruptly everything changed.

The first page is dated 12/2 (would have been 1996) and has a list of volunteer organizations. Covenant House, Recording for the Blind. I was looking for a way to give something back to the community, I recall, feeling so blessed to be home with my delicious baby. Then there’s a list of the people I sent Christmas cards to that year. Oh, what a cute little thing I was! So organized! Ha! Don’t get uppity, young me; it won’t last.

There are shopping notes for Christmas presents, and then a detour into a crash course on sewing machines. I remember getting paid for a freelance job and treating myself to a Singer, which I think I used about three times during the next five years.

Turn another page, and I must burst out laughing, because in the middle of a list of groceries is a large giraffe head. I remember that giraffe! Jane had a board book with a few simple line drawings of animals, and one day she wanted me to draw the pictures in that book. She was teeny tiny, maybe 18 months old. I practiced, I really did. I learned to sketch two animals on demand: an alligator and a giraffe. They are the only things I can whip out on a moment’s notice. Now fast forward about a year. I must have kept on drawing Jane’s giraffe and alligator well into her chemo days, because at one point during her hospital stay, the staff was painting a mural in the playroom and they were looking for someone to draw a rocketship. One of the nurses said, "Oh, get Jane’s mom, she’s a great artist." The playroom staff hunted me up and asked for my help, and I had to say, Sorry, I’m no help at all! Unless you’d like a giraffe in outer space!

Anyway, here is my giraffe head. Contented creature, isn’t she?

Flipping on, I find notes for another freelance project, a list of emails to write (even then, I must have been behind on mail—who bothers to handwrite a list of people to whom one owes an email?), a phone number for someone named Becky, and then, goosebumps, pages and pages of notes about houses in North Carolina. We were planning to leave New York, you see. Scott was ready to go freelance, and we were heading for the country. My moving plans take up a quarter of the notebook.

But it was a plan-in-progress, and meanwhile, busy life went on. Here’s a page about a Carmen Sandiego book I wrote, a page—what am I, fourteen?—covered with my signature and the alphabet in italic. Perhaps I felt that my penmanship needed an overhaul; I have no recollection of this.

Flight plans: Jane and I were booked for a scouting trip to NC. Drawings of hands! Margin notes indicate I was working through Drawing on the Right Side of the Brain. Gosh, sewing, drawing, volunteering, writing; what a busy little bee I was.

Scrawled directions to my friend’s house in NC. (I guess the italics didn’t take.) Jane has ornamented this page with green marker, which probably explains why I got lost when we drove from the airport to this location. This means we’re now in early March of ’97. I am blithely filling pages with travel notes. I have no idea what’s about to hit us.

Oh, ouch. A draft of a thank-you note I wrote the regal old woman who owned the little rental house I picked out. The rental had once been a small train station on a prosperous farm in Greensboro, NC. Mrs. R. still lived in the "big house" and rented the farm and other buildings to various artsy types: a poet, a sculptor, a young couple who planned to homeschool their small brood. Scott and I were going to fit right in.

It was v. nice to meet you last Sat during my visit w/ Louise. Jane & I really enjoyed seeing the farm. I will visit Gboro again in June, and I will check in with you then. Until then, my best wishes for a beautiful spring!

A blank page.

Then:

3/15—Sat. Write: Aunt Bettye, Pam, S & D, Holly

And then some empty lines, and at the bottom of the page, my mother-in-law’s handwriting.

leukemia

3/24 moved to room 215 Hem/Onc unit

Jiminy crickets.

I must have handed her the notebook at some point, and she opened at random, because the next pages are my own notes from our first days in the hospital, which began on March 22nd. We are plunged into lists of antibiotics and blood counts. It seems to have taken me a few days to figure out Jane was getting "prednisone," not "pregnisone." Each new drug name is followed by a list of side effects. I must have been scribbling down as fast as I could to keep up with the doctors.

But the hospital notes break off as abruptly as they began, because, as I said, Alice brought me the nice journal sometime that first week. Perhaps stranger than the sudden advent of the cancer pages is the equally sudden return to humdrum chore lists. I seem to have grabbed this notebook off the shelf about a year and a half later, for there is a page dated November 1998 which details a Staples shopping list, people to whom I owed thank-you notes, and subscription renewal info for Mothering magazine.

—check Mary Beth’s address
— Lifetime Books return
—order science kit for Samantha

It’s been a long time since I thought of it, but I remember feeling soaringly happy one day about a year into Jane’s treatment, when there was a nasty foul-up on our credit-card statement that had me sputtering with six kinds of indignation, and then suddenly I realized what a luxury it was to be worried about nothing more serious than a billing error. For a long, long time afterward, I looked at to-do lists with a fresh perspective. Each nitpicky little task on the list seemed a kind of gift: here, Lissa, you are free to get caught up in the mundanities of life once more. But first go kiss that girl of yours.

Somewhere in my garage is a spiral, I’m sure, containing notes about planting peas in Virginia in March. One day, years from now, I’ll no doubt stumble upon the notebook I’m scribbling in this month. I’ll find notes about Wonderboy’s speech therapy and last week’s house closing, and, yes, that same silly giraffe smiling coyly beneath long-lashed eyes. Will I laugh at myself, the young scatterbrain I was, all wrapped up in transient daily details, oblivious to the surprises lurking beyond the turn of the page?

I hope so.

Jane and Rilla. Blurry, because like life, they do not stand still.