By Elizabeth Knapp
This is a story about the one who was brushed aside, the cancer child’s sister…
Four years ago on Valentine’s Day, my four-month-old daughter Molly was diagnosed with infant leukemia.
Four years ago on Valentine’s Day, my older daughter, then four years old, came home from preschool with her first bag of Valentine’s Day cards, brimming with happiness. She kicked off her boots, shrugged out of her puffy winter coat and before I could remind her to hang it up she spilled her many, lovely valentine cards out onto the hardwood floor, rifling through them to show me certain ones.
Then she noticed that her aunt and cousins were there. She noticed her baby sister was sleeping, her head lolling on my shoulder, instead of watching her with wide-awake eyes. She noticed that I wasn’t smiling.
“What’s wrong, Mommy? Look at this one! It’s made from a doily and it has my name on it! And why are my cousins here?” She fired questions at me.
I passed Molly to my sister-in-law and knelt down to be at her level, my heart breaking as I stuffed the cards back into their paper bag without looking at them. “Something’s wrong with Molly. She’s very sick and Daddy and I need to take her to the hospital. We might be gone all night. But you get to have a sleepover with your cousins tonight! Won’t that be fun? You can bring your rolling bag.”
She looked at me dubiously. “Can I at least show you my valentines before you go?”
Tears welled up, threatened to drip down my cheeks. I pushed them away and told her that I couldn’t look at them right now because Daddy and I had to leave right away, but I knew her cousins would be thrilled to sort through them with her. That I would look at them as soon as I could.
We went upstairs together to pack pajamas and a change of clothes. Her special stuffed lamb, Little Lamby, was to ride in the bag with the valentines. We packed her toothbrush and no-pull hairbrush. I took Molly back into my arms, kissed my reluctant and teary older daughter goodbye and watched from the window as she trudged out to the car with her cousins.
This could be a story about my baby who had cancer, but it’s not. There are other stories about that, stories about her scars, about how she almost died twice and then didn’t. Stories still to be written about the days, weeks and months during which we vacillated between fear and hope, dread and desire, boredom and anxiety. Stories that are so filled with horror I wish they were not mine to tell. I wish no one ever had to tell them.
This is a story about the one who was brushed aside, the cancer child’s sister, the one who went to preschool one sunny Valentine’s Day filled with the promise of a party and came home to have all her beautiful cards stuffed back into their drab paper bag. At least it had her name on it, looped in fancy letters: Amelia.
Amelia: my first born, my copper-haired firecracker. Amelia, who threw me into motherhood, introducing me to depths of patience, rage, love and joy I never knew existed. Amelia, who cried for ten months straight until she could crawl. Then, finally able to explore her world on her own terms, stopped crying and began to speak.
At the time Molly was diagnosed with cancer, Amelia was obsessed with fairies. She begged me to read books about fairies again and again and again. She drew fairies and wanted me to cut them out, demanded I talk for them so she could ask them questions. After being in the hospital with Molly for two days and two nights, I knew I had to go home to Amelia. But how do you explain leukemia to a four-year-old? How do you tell your daughter that her sister is just about as ill as a person can get and still be alive?
I made up a story about the fairies. Once upon a time, I told Amelia, there was a family of fairies: a mom, a dad and two sister fairies. One day, the baby sister fairy became very sick. Something happened and her body couldn’t make healthy blood anymore, and all fairies know that if a fairy can’t make healthy blood she gets very, very ill. The baby fairy had to go to the fairy hospital. The doctors at the hospital had to give her special medicine that seemed to make her even sicker but actually, they hoped, would make her better. It was red, and they had to put it directly into her blood.
The baby fairy sister, stuck in the hospital with all this medicine that was supposed to make her better but made her body feel terrible, lay around all day with her wings drooping. The mom and dad fairy were always fluttering over to the hospital, worried about the drooping wings and also worried that their big girl fairy would think they didn’t love her anymore when, in fact, they loved her so much their hearts ached every time they had to leave her. It turned out that the only time the baby fairy’s wings didn’t droop was when her sister fairy was visiting. So it was very, very important that the big sister visit her as much as possible, because all fairies know that you can’t get better if you have constantly drooping wings.
I had to stop here because I was crying too hard to continue.
The weeks that followed developed into a pattern. My husband stayed at the hospital Thursday to Sunday, and I was there Sunday to Thursday. Here is what Amelia remembers about that time. When I was home, we slept together at night, she and I. I had to wake in the middle of the night because, as a breastfeeding mother away from her baby, I needed to pump milk for Molly. Amelia, so in tune with my rhythms, would wake with me and follow me downstairs, the steady whoosh-pop sound of the pump lulling her back to sleep, slumped next to me on the couch.
On switch days, when John and I swapped duties, Amelia would usually come to the hospital, too. Molly’s eyes would light up when her older sister came into the room. Amelia learned quickly to be mindful of the IV lines. She got to know the nurses and the child life specialists, where the art supplies were kept and that the patient kitchen was always stocked with popsicles and ice cream. Sometimes the two of us would explore the hospital, tunneling through dark hallways and popping out in unexpected places. One cloudy spring day, we found our way a secret garden surrounded by towering hospital walls. On warm days, when Molly was well enough to leave her room, we took her with us, her IV pole bumping over the walkway.
After Molly came home, Amelia learned to live with uncertainty. Any fever in a cancer child is cause for a trip to the emergency room. Which also means trips to the emergency room for the sibling. Bringing Amelia with us meant that we loved her just as much as Molly, that she was an integral part of our family, too important to be left behind. Trips to the ER were an adventure for her and she was a distraction for us. As a cancer child, Molly had top priority in the ER but once we were in a room, there was lots of waiting and wondering and sitting around. Amelia’s presence cheered up Molly and made it impossible for us to sink into our own gray worlds of worry and fear.
Once, Amelia received a trophy from an organization that supports siblings of kids with cancer. It still sits in the center of her bureau. “AMELIA,” it reads, “SUPER SIB TO A CANCER KID.” And even now, four years later, when asked what makes her special she replies, “My sister had cancer.”
I have to believe that my thoughtful, serious firstborn baby has learned things—about compassion, about rolling with the punches, about finding your place when the world is not about you—that she may not have learned had her sister not had cancer. She played with kids in the playrooms with smooth, shiny heads like her sister’s, kids in wheelchairs whose cheeks were swollen from long-term steroid use, kids whose IV poles clattered after them wherever they went.
This story began with the cancer child because when you have a child with cancer their sibling, heartbreakingly, comes second. Their valentines will sit unappreciated in their bag. Their own plans for the day will be swept aside when their sister wakes in the night with a fever.
The year Molly had cancer, I recycled Amelia’s crumpled, forgotten valentine bag without ever looking at the cards inside. This year, four years later, Molly went to her own Valentine’s Day party and came home with her own paper bag, a fancy “Molly” scrawled across the top. She turned her bag upside down and the cards fluttered out on the floor. My two girls sat together, admiring the cards, their heads touching, blond hair mingling with orange. Watching them, I could see their wings humming happily behind them.
Author’s note: Molly is almost three years off treatment and remains cancer-free. She delights in provoking her big sister in a myriad of ways. Amelia is a curious and thriving second grader who, despite said provoking, continues to champion her little sister in every way.
Elizabeth Knapp lives with her family in a small town in Vermont. When not enjoying the antics of her two young daughters, she can be found writing, gardening and wandering the woods and fields around her house.