I am challenging your definition of survivor because I know differently; because I know a story of an extraordinary survivor. Now, I fully realize that a story of survivorship should have as its centerpiece the one who lived through breast cancer. Keep reading, and you will learn of that survivor. Identical to the smooth stone dropped quietly in a pool, the ripple effect of breast cancer echoes through lives, through families. It cascades into the emotional and physical lives of those who stand witness to the struggle. Those who also live through and survive breast cancer. Lives that in my opinion are equally as brave, if not braver. Lives that demonstrate a different brand of survivorship; that of pluck and determination in enduring the diagnosis and treatment of breast cancer equally. For I have come to understand that you don’t have to have cancer cells in your body to be inside the frame of the breast cancer snapshot. And that most often it is those who stood witness and strong in a host of brave and tender ways who define survivorship, who promote it with laser clarity. They are the ones who breathe life into survivorship and never let it out of our site.
In my mind, the tiniest, yet bravest of these survivors are our children.
You see, I am the one who had breast cancer. But I am not the courageous one, the exemplary one, or the hero. Those accolades fall upon a much tinier heart. A female heart yes, but a much tinier soul, one who took great leaps of courage and determination in the face of cancer. One who survived her own fears of what cancer could do to her life, and yet made it through with steely determination. This is about a phenomenal survivor. This is about a 7 year old’s mother’s cancer. My cancer. My daughter. Her bravery.
This is a story of survivorship in action; the amazing story of a future woman who walked hand in hand with her mom along the difficult road that breast cancer is. A survivor who despite my qualms, sometimes walked point for me, sometimes deflected angst for me. This is a recognition of a very young survivor who so very often showed up with such an awesomely brave and tender heart, a tiny yet strong heart. This is a story of a little girl’s spirit who made her mom’s journey lighter, less toxic, less icky.
This is the story of Amelia Hope.
A little girl named “Hope” for so many reasons. First for the beauty of the concept, the peacefulness of the word; how speaking it quietly shrouds us with comfort. A little girl named Hope because we never lost hope that she would find us, even after we lost several pregnancies. A child named Hope for her Grandma Ellie who until the day she lost her own life to cancer many years before, never lost hope. A child named Hope because her mom firmly believes that hope springs eternal. And Hope, simply because the concept confirms belief in a calm and joyful future and this child shined at birth with all that was to be. Hope because she was the daughter I had hoped for, because although I didn’t know it then, she is more than I had ever hoped for in a daughter.
This kid is a survivor. Hands down.
Amelia Hope was 7 years old when her mother was diagnosed with breast cancer. She was old enough to understand several truths, many of them frightening truths about the disease. But mostly, she grasped the saddest truth, that she was now one of four children she already knew in her young life whose mom had been treated for breast cancer. Perhaps this knowledge provided a firm context for understanding the disease and in an odd way, normalized cancer for her. Perhaps (coupled with the genetics of her namesake,) it hatched survivorship in her. The simple fact was that she saw nothing but living examples of survival around her from which to understand its course and draw conclusions about the disease. You see, Amelia Hope embraced survivorship as her truth from the beginning. And it was contagious I tell you, downright contagious.
As a single parent, I understood that I had to stay in check that I not unload too much on her in the journey, not parentify her in this process. I had to buffer her because she was my child and not my shoulder to cry on. Yet, I understood too there would be things she would witness and learn that just could not be hidden in the same house, perhaps should not be hidden. Kids are intuitive. It seems that often our best attempts to insulate them from harsh realities serve more to un-nerve them than to armor them. I realized this truth and while I was careful what I let her see or hear, she constantly amazed me with her ability to intuit sadness or fear or anxiety on my part. She further amazed me with her endless capacity to be kind, empathic and brave, and lend her “survivor eyes” to the ordeal; in her ability to force me to put those survivor glasses of hers on daily through the journey.
This is my child, who I prepared that I would lose my hair on chemo day 19. I circled it on the calendar so we knew. True to the doctor’s word, on the 19th day I stepped out of the shower to comb my wet hair and it came out in clumps. The small child in the tub next to me watched quietly. She was the owner of the small hand, a tiny starfish of a hand that appeared on my forearm a moment later as she said, “It’s okay mommy, we knew this was going to happen.” This was the brave child who helped me release my hair to the birds with joy, like it was a gift to those baby birds who, “would be so lucky as to have mommy’s hair as their home.” A child who rubbed my bald head with glee every night, firm in her belief that with the end of chemo and a little magic from her, my hair would eventually grow…eternally. This is my child, who coached me on wig styles and convinced me that really, no hair and a bandana was just fine. A child who told me I looked cool bald. A child who in the true spirit of survivorship saw lemonade, not lemons.
And so survivorship hatched and grew within her. It became, as it was once said about hope, “that thing with feathers that sits perched in the soul.” And on nights that I just couldn’t hide my sadness and wept quietly, she noticed, and told me I looked pretty, hitting the target in a way no other could. She would hug me and say, “It’s okay mommy, it’s okay,” and I believed her because she seemed to know it would be. This is the child who giggled with glee, “You have dots Mommy! Dots on your eyelids! Your eyelashes are growing!” And the same child who felt it her duty to inform me that ahem, my armpit hair was back in, and didn’t I need to do something about that. A young girl who wore pink cowgirl boots throughout the treatment and told anyone who would listen they were, “cause we’re gonna kick breast cancer’s butt” A child who believed those boots had the power to do just that, to create survival, because she had it in her heart already and she felt it, down to her toes.
A child who absent spoken words, recognized my green and brought me a soda. Who reminded me to rinse with salt water, do my shots and who set up after school time in the “big bed” for us to play games together. A child who did not complain how cancer limited her life, who didn’t complain that she could not host sleepovers for a whole year because her mom just couldn’t do it with all the drugs that made her woozy. A child who didn’t complain when I had to avoid her like the plague when she herself was sick with colds, and who survived those colds without cuddles from mom (which we know cures them better than anything.)
A child who realized very early on that survivorship has as its core the concept of seeing what cancer gave you instead of what it took from you. In the year that I could not work and we had much less, she made me feel like we in fact had more, no, she made me see that we did indeed have so much more. That cancer had not taken a darn thing away from our family and wouldn’t, well, it just couldn’t. Cancer’s not allowed to when you are a survivor.
This is the child who told me I had, “going out hair” way sooner than I really did, but “who cares, mom?” Who proudly paraded me through the school when I had 1/8 inch of hair. She taught me that survivorship is about what’s inside you, and not about “them.” It’s about sometimes just saying, “Who cares?” A child who let me know in no uncertain terms that while it is okay to cry and be scared and have a small pity party for yourself, in the end, “it will be okay mom” and keep moving forward. She knows deeply at her core that getting out into the backyard to play hand games and swing on the rope swing can be the tonic for all that ails you. That when you sail on a rope swing bald, you not only think you can fly, but believe that you can. And that you will survive.
My child, who because 7 weeks of radiation fell in the summer, gave up pool time and instead went every day with me to treatment, befriending the staff. A confident and in control little girl who bravely stood outside the radiation room working the buttons (with the staff’s help) to zap the cancer; believing she was delivering my radiation. A child who’s belief in that power of hers made me believe in my own.
This wee soul came face to face with oodles of people at chemo and radiation; bald people, sick people and quite frightening to a seven year old people. And she, with her brave and tender heart, looked them in the eye and smiled, and talked to them. She never saw any of us as sick and maybe dying, but as surviving. She saw us simply as people in the process of getting rid of cancer, of kicking cancer’s butt. Maybe this little soul never realized that dying was an option, but because she didn’t, we didn’t. She made us see that dying simply wasn’t an option; it wasn’t even on the radar. Only survivorship was.
Amelia Hope, a breast cancer survivor. A child who lived through and survived breast cancer just the same as her mom. Yet she really lived, and saw that survivorship was about living. My sweet yet very self assured child who wrote an essay at school on the topic of her mom that made her teacher cry. It read:
“My mom is caring. I think my mom cares because I am scared to go out back by myself so she goes with me. Also my mom is caring because she lets me cook dinner. Another thing is that she packs my lunch everyday. My mom is fun. My mom is fun because we always celebrate my birthday. Here is the grande finale. My mom is cool because she has peach fuzz hair.”
I wept too. Because this was written after five long months of chemo when I had been feeling sad for all I hadn’t been able to do for her these months, and she, instead felt thankful for what I had been able to do. Thankful for what she had in the face of cancer, instead of what she didn’t have. For what cancer had given us instead of taken from us. For peach fuzz hair. For survivorship.
See, I thought survivorship began at that moment you crossed the finish line, with the last chemo, the surgery, or maybe the last radiation. Yet this small survivor taught me the biggest lesson. That survivorship begins the day you are diagnosed, and it never ends just as long as you have belief in the power of the pink boots.
She understands now that survivorship is about how you go on, how you are a steward of the lessons you learned. It’s about how you take care of your body and other’s bodies. How you use your experience to allay fear in others. She recently gave up a day ice skating and shopping with mom and told me without skipping a beat, to go with a friend newly diagnosed with breast cancer for her first oncology visit, firmly stating, “You need to go with her mom, she’s probably really scared.” She considers herself my trainer in preparation for the Race for the Cure (because well, your butt did get big mommy) and often does the 3 mile loop with me on her bike. She readily talks to other kids who have moms facing the breast cancer journey. She talks to their moms about her experience, teaching that kids do in fact survive and yes, do have scars right along with their moms, but the good kind of scars, those that remind us each day of how lucky we are and of how brave we were. With her quiet bravery she breathes the confidence of survivorship into them. With her unspoken words, with her unfaltering resolve and with her tenderness, with her simple yet wise self assurance, she lets them know that dying is just simply not gonna happen, and that survivorship will. And that the finale will be living, surviving and laughing. Being alive and moving forward.
And indeed, it will be grande.