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.
That last line made me cry. What a beautiful post…
On March 22, 2007 at 10:08 pm
Alice Gunther says:
Lissa, this post is tremendously beautiful in every way and brought me right back to those days and the surreal and sudden closing of the door to our carefree infant phase.
The pictures, especially the first one, actually made me gasp. What a memory.
Even so sick, Jane is still the prettiest thing alive, and you look fabulous in that MacDonald House hair. I love the fact that you are reading to her in that photo. No one ever read more to a baby than you did during those months. I cannot imagine a more perfect and loving companion for a sick child–your yourself should be named Joy!!!
On March 23, 2007 at 4:51 am
>> 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.
You have mentioned this before. I loved it then as I love it now. Your family are truly blessed.
On March 23, 2007 at 5:07 am
Karen E. says:
What a beautiful, joyful post … what heartwrenching, but also beautiful pictures. God in every detail … perfect.
On March 23, 2007 at 5:47 am
You and Scott have written about this experience so achingly well 10 years later… Well, I cannot imagine how much MORE I will cry when I read the chronicle you write when you are 60!
Joy and laughter are so important. When my dad was going through chemo he had me take pictures of him wearing a rainbow clown wig – he wanted to send it to the nurses with a note saying that his hair *had* grown back, but it was coming in slightly different than before…
On March 23, 2007 at 9:08 am
Beautiful. I can’t wait to read that novel someday.
On March 23, 2007 at 9:51 am
Mary Beth P says:
Oh, Lissa, although we were barely more than acquaintances in March 1997, the day I heard of Jane’s diagnosis is forever etched in my heart! I fell in love with that golden haired baby girl the minute I laid eyes on her,bopping down 47th street in the blue striped sling!I feel SO lucky that she was one of Richard’s first friends. Countless prayers have been offered up (and continue to be) on her behalf. Her courage and your mothering are a constant source of inspiration to me! Tears are dripping down my face as I write this comment!
On March 23, 2007 at 10:56 am
Lissa, this is soooo wonderfully expressed. You must submit this to Grand Rounds. There are so many families who I took care of that I wonder what happened to them. One, had a little girl, two, I think, who was diagnosed with tumor with a poor prognosis and an unforgiving chemo regimen. She relapsed, had a BMT, and as far as I know did well. What will stick with me forever, though, is how positive and joyful this family was. As nurses, we fought for the priviledge to care for them. Middle of the night admission to rule out infection, your child has a 60% chance of survival, another platelet transfusion; throw it at them, they would shrug, smile and say, let’s get to it and do what we need to do. They told me once that after hearing her diagnosis and understood the time that they would spend in the hospital that they had a choice. They could make it a living hell. OR they could treat the nurses and doctors as their new friends, the on-site school a treat to visit, the IV pole her buddy to ride around the floor. It wasn’t-oh, no, we have to go there again, it was more like-hey, we get to go see Catherine, and Sarah and Carol. I only wish more families could embrace this wisdom, it truly can make the difference between living and dying. Hugs to Jane.
On March 23, 2007 at 11:00 am
Beautiful, Lissa. I’m offering prayers of thanksgiving for you all. God is good!
On March 23, 2007 at 1:16 pm
I’m speechless, tears streaming down my face, in thankgiving for your daughter and my niece who was also diagnosed with ALL just about one year before your daughter (she is also doing well now!)
On March 23, 2007 at 1:59 pm
I’ve been reading your blog for awhile now and the one at club mom. I’ve enjoyed your posts very much. But this one is very special. Thank you for sharing. I believe I could transform our normal days into more joyful days. Thank you for reminding me. 🙂
On March 23, 2007 at 2:56 pm
Such EXCELLENT advice. Brought tears to my eyes. May your Jane have many more happy anniversarries of that day. Thank you for this wonderful post!
No wonder you won the 2005 Best Homeschool Mom award! 😉
I’m about to send you an email…
On March 23, 2007 at 3:17 pm
Maria Ashwell says:
It almost feels too good for my heart, the way I feel right now. Thank you so much.
On March 23, 2007 at 5:20 pm
Alice Gunther says:
Poking my head back in to say I was especially moved to remember your good landlords, the Pappases. You and Scott must really miss those folks.
On March 23, 2007 at 8:36 pm
Kristen Laurence says:
This story is just so beautiful, Lissa. How blessed you all were and are to have each other, and to be able to share your true joy with the rest of us. It particularly struck me that your Joy in those years was Christ Himself.
Now I’m off to kiss my girls!
On March 23, 2007 at 8:49 pm
Nicole in MN says:
Thank you for sharing your life with us. The heart-wrenching reality and your grace-filled wise response to it motivates me to choose joy in my own life whatever it brings. Thank you.
On March 23, 2007 at 9:46 pm
I agree with Alice . . . you, my dear friend, should be named Joy!
On March 24, 2007 at 1:44 am
This is a gorgeous, hopeful post. How amazing to turn the anniversary of such a dark moment into a celebration of joy. Thank you for the reminder.
On March 26, 2007 at 9:02 pm
Suzanne Temple says:
I’d read your husband’s shorter version, and now I’m glad to have taken the time to read this longer one. I think the “Mom’s Eye View” is just as remarkable.
On March 27, 2007 at 5:21 am
elena maria vidal says:
I am reading this with many tears. I went through this same process with my dad; I cannot imagine how heart-wrenching it would be to suffer through it with a small child. Thank you for sharing your story of courage and immense love.
On March 28, 2007 at 5:12 am
Heather (Sand Sea & School) says:
I read this with tears streaming down my face- my youngest daughter (Emma, 5 years old) is a heart transplant patient and I related soo very much with your words. I am a deeply religious person also, and I completely understand the total dependence on prayer and faith- We also are way to familiar with Ronald McDonald houses…
Thank you for this. Thank you for the reminder that God is good, even in the rough spots. I right now am in a rough spot, a bit overwhelmed- this post lifted me and reminded me of the many things I have to be thankful for.
Emma grace is 5 years post transplant- The journey of those 5 years has changed me completely- in more ways than one.
Im babbling- thank you.
On March 28, 2007 at 4:15 pm
Cheryl M. says:
Coming in a little late here – this post is so beautiful! I have a precious daughter the same age.
On April 4, 2007 at 5:46 am
Jane Ramsey says:
I thank God for your precious Jane and all the joy she has brought to you and all the joy you have shared with us.
On April 20, 2007 at 9:55 am