A remix on this Mother’s Day of my two favorite blogs about my two favorite people in the world….
I kinda think they hung the moon…
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 it’s 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.
I remember one night when he was just weeks old. Me, exhausted at 4 AM trying to feed and soothe him when I heard footsteps on the dry leaves outside the window, along the side of our house. At first I thought it was a person, but at some point I realized by the shuffle-shuffle sound that it was likely an animal. As I looked out, there peering back up at me were four tiny sets of wide eyes, their little bodies riding on their mother possum’s back as she made her way through the night foraging food. What struck me was how instead of leaving them unprotected in the nest, she carried them with her. This night came just as I was adjusting to motherhood, and the notion that always, always… this child would go wherever I went, both physically and mentally. I was grappling with the hugeness of that responsibility; it seemed so immense in those early days. Then and even still at times, I questioned my ability to be strong enough to carry him through everything that life threw his way.
It was then I realized that no matter a possum or a person, we are meant to carry our children, always. Little then did I realize the power in this sweet infant boy to carry me.
Colton came to us in his own due time, not ours. At 40 weeks of pregnancy, I was drumming my fingers on my desk at work. At 41 weeks, Pitocin drip, drip, dripped, bringing its monster contractions, yet he still refused to budge, as if saying from inside, “I’m good.” Finally at 42 weeks they went in after him and he, at almost 10 lbs, came quietly into the world. I had wanted a boy and was over the moon, but I won’t lie; he was a hard baby, very colicky and he did not sleep through the night till almost a year. He and I went through a lot of wars together in the wee hours of the night. But what I remember most sweetly were the long quiet nights together, both of us wide awake, gazing into each other’s eyes and at the stars from the porch swing. Nights when he was peaceful; happy and calmed for me to just hold him. Nights when he wanted nothing more than to be carried, really needing nothing more than to know I was there for him and to satisfy his need to feel the strong support of his weight in my arms. Those were the nights where he fed on nothing more than the deep human gratification that comes with the sense that someone who loves you is nearby, and will swaddle you in warmth and safety in the storm.
As I carried him through the house on those nights, singing, rocking and just holding, those dark, dark brown eyes would peer up at me. In them I saw the depth and steadiness of a child who would quietly and solidly change the world. At times his force took my breath away, his field was so powerful. I knew this in my heart. He was and would become one of the quietest and calmest, yet strongest forces of nature I have known. He was what we folks in the south call, “an old soul.” Wise beyond his years, born with an inherent map of the world and people, and a natural moral compass that has rarely wavered. Needing nothing more in return but at times to be carried, fueling his force with that human connection.
As soon as Colton could talk, he’d reach his tiny hands upward and say, “Momma carry me.” Not in a demanding way, never tantruming about it, he just wanted to be carried. Don’t we all at times, when the world is new and uncertain? Don’t we all see things better from that perch that is the elevation we experience when someone lifts us up? Don’t we all feel less tired when carried?
Colton has never been a demanding kid; he really asks for nothing to be honest, almost to the point you are finding things to offer him. Each year Santa has to come up with his own list for Colton, as one is never made. I regularly have to make an effort to stop and be sure the attention and time is equal with he and his little sister, as he asks for so little. And even now, 17 years after week 41 of gestation, his typical response to any offer of anything new or change, is still, “I’m good.”
He’s not a doormat or milquetoast by any means; quite simply he is the opposite; sure… solid and even. Very little rocks his boat, perhaps because he has had to learn early in his young life how to keep a boat steady in a storm. Perhaps because at a very young age, he learned the difference too, between a real hurricane and the summer storms that are life.
A tremendously compassionate kid, it seems he was born understanding the complex equation of how our actions add up and provide impact on others and with an innate grasp of the delicate balance that is behavior and feeling. In the equation of A + B = C, where many kids are overly concerned with C, Colton is more apt to be wondering about A and B. Once when Colton was five he asked me a question about the stars in the sky. He said, “Mom, if there was nothing before God created Adam and Eve, does that mean there were no stars in the sky before them?
He reminds me of the quite cool Violet in the movie, The Incredibles who had as her super power of “the invisible force field.” Violet (like Colton), black hair over one eye, is a tad shy and prefers living life behind the scenes. Invisible is where she does her best work, where her super powers shine. Inside her force field, there is no gravity. The field allows her to appear seemingly out of nowhere (although she was always there) with this Pixar invented sound of “schhhoooommm.” Colton likes to be invisible at times; that is where his zone is, there, behind the scenes where I imagine he thinks his deep thoughts, observes and processes. Invisible is where he does his best work too, and his powers shine. And he like Violet, often appears out of nowhere. We go into a grocery store and Colton disappears, yet the minute we hit the door to leave, we girls giggle, because without fail, schhhoooommm, he’s right there behind us. Quite apparently, having been watching over us the whole time. Schhhoooommm.
Colton was in sixth grade, a 12 year old boy when his mom was diagnosed with breast cancer. He was a kid who was just rounding third on a really rough stretch in his life, adjusting to a brand new middle school, and having just gone through a difficult adjustment to a very sudden divorce. The cancer diagnosis was made just two weeks before Christmas. And his dad had left when? Two weeks before Christmas. Santa had yet again brought this child a mother who was in an emotional heap on the floor. And home plate was moved… yet again.
When I got diagnosed, I undeniably experienced immense angst and anger at God on Colton’s behalf. I felt like this kid just couldn’t catch a break. He had so much on his plate already; it had already been loaded full of emotional stuff that he had barely digested. And then I got sick. Shit. Then I got sick. And it was heaped onto this quiet soul’s plate. Here was the one time in his life when offered more that he didn’t say, “I’m good.” He just accepted it, allowing as he once described about his class losing marbles from the marble jar, “scoop after scoop of a grown up sized hand” of yuck to be piled on his plate.
I remember thinking, “How will I ever keep this little guy’s head above water now?” I felt like I had been treading water for years already, barely keeping this little head next to me above water, and now the cosmic world was putting rocks on his head. I wondered, “How do I carry this soul through this storm and keep him afloat?” especially when I was so whooped from chemo, especially with the powerful gravity that rocks create.
For the second time in this still fresh life; a new and uncertain world came suddenly upon him. And for the second time, he couldn’t reach up and say, “Momma, carry me,” because momma was a puddle on the floor.
I just wanted the cosmos to quit picking on my kid.
When you are a single parent and this sick, you must mind the urge to parentify a kid, especially an older kid in the house. You must corral the tendency to make them an emotional partner where they should not be; or to give them too much added responsibility to carry as a result of the illness, because illness alone is well, a lot for a little kid to carry.
But with that said, I underestimated his swimming ability. Big time. I underestimated his ability to step up to the plate, even if it was chock full of yuck. Big time. I underestimated his ability to stand up to the bully that is cancer. Big time. I underestimated his ability to defy gravity. Big time. And I totally underestimated his ability to carry me.
For it was then, in those early weeks of treatment that I suddenly felt the catch of my weight on his still growing arms, as he held not one, but two heads above the water.
Colton did not like to talk about the illness. He did not ask what surgery I had, he only knew I had surgery. He did not ask how chemo was done; he just knew the chemo days and dynamics of two days after being hell. Never once did he ask if I would die, or what would happen. Colton did not want to see my bald head, ever… perhaps wisely estimating the toll of that image in his mind’s eye forever. Colton watched cancer from behind the scenes.
Despite what he did not ask to know and did not ask to see, he was not blind, nor ignorant to the cancer. He knew there was a monster in the house, the old soul in him knew it was serious; that there was a freaking four headed, fire breathing dragon in the house.
He knew that cancer wielded as one of its weapons, the ability to cut through the invisibility field; to find you and make you quite visible, spotlight visible, in spite of your preference for invisibility. At 12 your whole peer life is about finding your place in the world. The last thing you want, especially if you tend to toward the background, is to become more visible. Having your mom come to your school program in a wig with no eyebrows pretty much dissolves the invisibility field.
I remember coming down to the kitchen, very sick one afternoon in the early days of AC, when the kids had come in from school. I vividly remember him looking at me as I took his sister’s coat off, and his even voice simply saying, “Not feeling well?” I said “No,” and went back upstairs to lie down. It was what happened that afternoon and every afternoon after that day, that defined this tender heart. He thought of something to do and did it. I woke up around five to the smell of food cooking. I walked into the kitchen and there he was making teriyaki chicken, his sister at the table with her homework (assisted by him) complete. He filled in the blanks. Schhhoooommm.
Colton’s ability to almost instinctively, see a blank and fill it made it possible for me when asked what was needed by neighbors, to say, “I’m good” and mean it. I remain certain that his sister managed my illness so well because although her mom changed, her own day to day life had no gaping holes because Colton was there. Because Colton swooped in… shhhoooommm… seamlessly with A and B, she had C. Amelia was a busy, busy kid to entertain, and Colton kept her busy every afternoon. I’d hear him playing her favorite game, Pretty Pretty Princess over and over with her, doing homework with her, playing outside with her, and watching TV with her. At 12, watching a Barbie movie with your 7 year old sister while wearing the crown from the princess game is so not what you want to do. Schhhoooommm.
I look back on those days too very sweetly; and remember the gift of how he allowed me to float and rest and heal and breathe. How he kept us alive. How he formed his field around us and allowed us to hide from cancer, to be invisible to cancer so many of those days, simply by finding a way for life going on as normal.
This strong and solid force of nature provided the outer ring of care, the force field around us; giving us the ability to defy the intense gravity that is cancer.
It takes a heart that is a force of nature to make us invisible to cancer, at least for a while.
It takes an incredibly strong heart to carry others. It takes a compassionate heart to know what someone needs before they need it and an empathic heart to intuit someone’s blanks seeing what is not there, and instinctively fill them in. It takes an unselfish heart to allow visibility when you prefer invisibility; to sacrifice your invisibility to make someone else’s world normal.
It takes a wise heart to gauge how to slay a dragon on your own, and a more courageous heart still to fight that dragon alone in the kitchen, protecting your little sister while your mother is upstairs sick, poisoned by the dragon.
It takes a thoughtful heart to wonder and worry about stars in the sky, and a tender heart to assure they shine for your family.
Indeed, it takes a grand and tender heart, to absorb the heavy gravity that cancer….swaddling your family in your field and allowing them to float, weightless in the quiet of an afternoon storm.
I see you Colton.
“I believe that infants and babies whose mothers give them loving comfort wheneverand however they can are truly the fortunate ones. I think they are more likely to find life’s times of trouble manageable, and I think they may also turn out to be the adults most able to pass loving concern along to the generations that follow after them” ~Fred Rogers