All too quickly, those years came. Eventually, both girls were toilet trained, sleeping through the night, and dressing themselves. They started school and achieved more firsts. They took showers, washed their own hair, cleaned up their toys, and learned to read and write. I remember being relieved and exhilarated. They were growing up!
When your days are filled with the unremitting needs of small children, the hours can drag on. You tend to look forward to a time with more freedom. At least, I did. I rejoiced when my children learned how to do things for themselves — celebrating their “firsts” rather than dwelling on their “lasts.” I took time for granted, hurrying through moments impatiently, as though moments were endless. It was a reckless parenting oversight, a gross newbie mistake.
I don’t remember the last bedtime story I read either of my daughters.
I don’t remember the last time I washed their hair while they giggled in the tub, making soap bubble castles and playing with toy mermaids.
I don’t remember the last time either of them called me “mommy” instead of “mom.”
Things were humming along exactly as planned until August 2012 — the month my older daughter was diagnosed with a rare malignant tumor on her liver. She was 11 years old.
My parenting style began to shift after that, though I didn’t realize it then. I stopped waiting for milestones, collecting firsts like rare coins. I began a different kind of waiting — waiting for her to get well, waiting with breathless agony for normalcy and health to return.
And it did return, intermittently, over the next five years. She went into remission, then relapsed. She responded to various treatments, then didn’t. She got incredibly sick from surgery, chemotherapy, and radiation, but she recovered. Her illness ebbed and flowed while I clung stubbornly to the future, to looking ahead, to the time when she would be well again.
I hadn’t learned to live fully in the moment — not even when the treatments stopped working, not even when words like “palliative” and “hospice” entered our conversations, not even when her scan this past January showed so much tumor progression that her oncologist described her cancer as a freight train — unstoppable. Her tumors had grown enormous. They filled her abdomen, pelvis, bowel and lungs.
She took her last dose of chemotherapy the day of that last scan. We paid our last visit to the pediatric oncology clinic.
The “lasts” kept coming — relentless, heartbreaking and agonizingly final.
January was the last time she was able to walk upstairs without gasping for breath.
February was the last time she had the energy to wake up in the morning and go to school.
I can’t remember the day she made me the last crane.
She’d started folding origami cranes when she was about 11. She’d had a liver transplant and her cancer was in remission. She wasn’t allowed back to school because the risk of infection was too great. She’d been drawing a lot, doing projects, and playing with the crafts that so many people had sent her as gifts. She’d gotten some origami paper and a little booklet and folded her first crane.
She continued making cranes throughout the years, often as a way to thank me for something (e.g., “I’ll make you two cranes if you help me clean my room.”) They’re all over the house — perched on shelves and cabinets, hanging from clear plastic thread above my computer, sitting atop the mantle in our dining room.
After her last scan — the “freight train” scan — her oncologist told us her left lung was in danger of collapse and that we’d see obvious symptoms of this soon, likely within weeks. He was right but, still, I wasn’t prepared.
She went from going to school three or four days a week to one or two days. She wasn’t able to walk up the path to her classroom, then she couldn’t walk more than a few steps at all without gasping for breath. Her appetite disappeared. She started sleeping more and more. On Feb. 28, she woke up and said, “I don’t think I can go to school right now. Maybe once I’m feeling better …” She never went back.
Soon after that, she slept for the better part of two days with very little lucidity and, in a panic, I emailed her palliative care doctor. Is she dying? Is this it? A litany of “lasts” ran through my head: her last words, her last laugh, the last thing she ate, the cranes all over the house. Would she ever make me another one?
It turned out we’d increased her pain medication too quickly. At least, that’s what we think happened. There’s no way to really know for sure, but she came out of it. She woke up. She rallied for a while. Those two days of not having her with us — really with us — marked the last moment when we had any hope she’d beat this.
The last crane is orange and white. It sits on my desk beside two smaller cranes. I look at it daily and try to remember exactly when she made it, but I can’t remember, no matter how hard I try.
In the end, I had small hopes — one more crane, one more laugh, one more teenage eye roll. I collected the moments because they sustained me. They seemed to forestall the inevitable. But it wasn’t enough.
She took her last breath on Wednesday, March 22, 2017. My husband and I were by her side, talking to her, telling her we loved her. She wasn’t in pain. She died peacefully. I will always be grateful for that. And for the gift of cranes which decorate my house, evidence that she was here. She’ll always be here.
Jacqueline Dooley is a writer, entrepreneur, and mom. She’s the author of two children’s books, “Doorways to Arkomo” and “Doorways Home.” She has contributed essays to the Huffington Post, GoodHousekeeping.com, and Pulsevoices.org. She blogs about her daughter at www.healingana.com.
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