by Janet Damaske
My mother had the best set of legs; anyone who ever saw them would agree. They didn’t see much sun and they didn’t go on forever like some great legs do, but they were dancer legs, always working, twirling, pointing, flexing, barely ever still.
When she got the call that her cancer had come back for the third time, she and I were standing in a subway station. When I saw her face fall, I sat down on a bench and lowered my head, my eyes resting on those legs. They were still for longer than a moment. But when they started moving again, her body stayed still and her left leg straightened and stiffened, while her right leg swung forward, kicking back, toe pointed. I heard her words, quietly spoken, but kept my eyes on those dancing legs and hung onto a shred of hope.
My daughter Grace, now 4, got her Grammy’s legs. They have more definition than one would expect in a tiny person, solid little calves, a miniature version of my mother’s, with the right calve a bit larger than the left. Her legs do not work with the skill that my mother’s did and her toes are never pointed, but they move just as fast and often. Legs pumping, arms flailing, she dances and skips and she runs, towards me, away from me, sometimes stumbling, always counting on me to steady her, no matter where I am.
Grace and Mom missed each other by six months and seven days. I took the pregnancy test in the hospice house where my mother was dying of ovarian cancer. She cried and then laughed: “I bet that’s the only pregnancy test that’s ever been taken in this place.” It was April then; we thought if only she could make it to Christmas, she’d get to meet my second child. But she was gone by May.
In the weeks when my mother lay dying, Grace was taking form – her heart pumping blood; her brain and spine developing; her tiny nose, toes, fingernails, all brand new. I cannot decide how I feel about this, that at the precise time my mom’s heart was slowing pace, as her body was shutting down for its final rest, Grace’s was booting up. The little girl whom Mom and I had spent years envisioning slipped right past her Grammy, leaving me hopelessly shouting, “You missed her! You missed Grammy! She was JUST HERE!” And to Mom, “Tell me you can see this child. Tell me you aren’t actually missing this.” One is here and one is not.
And now, I see my mother’s legs and her petite hands and her long, narrow fingers and the walnut shell shape of her eyes in my 4-year old girl. I wrap her folded hands in mine and cup them to my face, breathe her in. I never meant to see my mother in my daughter, but I do, and I am grateful, but also troubled.
My mother got her good looks and her hot temper from her mother. Her love of music and her nervous energy came from her father. And, it seems, the mutated BRCA2 gene that we discovered in the years before her death came from him as well. This imperceptibly small error lay along the Chromosome 13, where one particular gene, whose job is to suppress certain cancers, breast and ovarian among them, simply does not work. The BRCA gene ended my mother’s life long before her body should have ever shut down.
I can’t say I was shocked to learn years after her death that the exact same mutated gene ended up on my own Chromosome 13. I have her green eyes and her inability to lie and that tiny dimple at the top of my left ear. I have her nervous energy and I have her bloody BRCA2 mutation, and I have a terrible suspicion that my daughter does too.
“Will Grace have to do what you did?” My 7-year old son asks on our way home from karate.
He refers to my double mastectomy and my bilateral salpingo-oopherectomy, though he doesn’t entirely understand what he’s asking or what’s gone on. My breasts and ovaries and fallopian tubes are gone now, but that doesn’t mean a whole lot to him. He has been told there will be no more siblings, which he’s responded to with relief more than anything. And he knows that if he puts his hand on my chest I will flinch, not out of pain, but because I’ll never get used to this numbness. I’ve been scraped out and refilled, and what is there now is hard, foreign, and entirely man made.
“I hope not, Noah, but I really don’t know,” I say, looking in the rearview mirror as Grace, buckled in her five-point harness, stares sleepily out her window.
When he was 5 and she was 2, and I had just learned I was BRCA positive, I had my breasts removed to prevent my near 50 percent chance of getting breast cancer before age 70. My toddling girl stared at me in bed, poked at my bandages and stared at the drainage tubes protruding out of my skin. “That hurt, mama? Your booboos hurt? Why did you get boobies at the hospital?” The words are used interchangeably and over time, it sticks. Booboos, boobies, they are the same.
My tiny nurse watched over me in the weeks that followed my mastectomy, nestled up to my side, sometimes standing over me as I awoke from medication-induced naps. She’d stay an arms length from the tubes dangling from my chest, but she was not afraid of the rest of me. She’d run her tiny finger along the bandages, and later, along the bright red scabbing lines, and later, along the fading scars. She’d check on me by the day; she’d comment on my improvement. “Oh! Better! The booboos look great, Mama! No more boobies!”
If ever I’d been forced to picture this time of my life, breasts removed, a sense of disfigurement sweeping through me, it was my mother who was standing over me, feeding me comfort and warmth, with soft words and soup from a can. But in her place, a not quite three foot, fuzzy-headed, pacifier-addicted, heavy-breathing, sweaty morsel of energy. She fed me plastic chicken thighs in tiny blue bowls made for stuffed animal tea parties and I felt better.
Early this year, when she was 4 and I, 36, a spike in a routine screening test resulted in a surgery my doctor advised I have as soon as possible, and so out came my ovaries and my fallopian tubes and any hope of one more pregnancy. I came home exhausted and infertile, and began my recovery by sleeping through the day. Grace peered in on me, listless on the couch, that late Friday morning, and then quietly mentioned she was tired too. She walked up the stairs and slept, three long naps within that one day, broken up only by mealtimes. She hadn’t napped in over a year and she’s never napped since. She will likely not remember this day, but I always will.
I did not expect to accept empathy from a 4 year old or nurturing from a 2 year old, but I suppose she started holding me up long before I even met her, perhaps from the moment I realized a life was starting in a place that only sees death. A chance of hope, subdued indeed by my own shame at envisioning a future while those residing in the same space were reaching back into their lives once lived or, worse, simply at a standstill, just waiting to die.
Because I never really believed my mother was actually dying, even as she lay on her deathbed, she held her place in my daydreams, right plunk in the middle, holding the new baby while I chased my son. Still, today, she is there in my head, coming in the front door of my home, whisking the kids away to the park, laughing as she closes the door behind her and runs to catch up with them.
The room across the hospice house hall must have welcomed and parted with at least five people in the six weeks we were there. I always knew when the end had come; calmly whispering nurses, sometimes with tears, followed by a noticeable increase in activity in and out of the room. At some point, our door would get quietly closed as the room across the hall was emptied. I listened and watched as it all took place, every time, and still I could not picture the moment that this scene would be ours to experience.
Things were perhaps more settled in our room, but our shared desperation became more palpable by the day until we could not help but acknowledge it. My mother took the lead, and in stunned, silent resolution, we followed. One day, she asked me to bring my laptop to her bed; we spent that afternoon online buying clothes for her grandkids in ascending sizes to cover the next several years. Another day, she sat the family down to explain where all Christmas decorations could be found. Other days, she talked about where she wanted her clothes to go after she was gone. On the nights when it was only she and I, we talked about baby names.
Most days, I lay next to my mother in a reclining chair and sometimes I crawled into bed with her, unable to put any space between us. At times, I sobbed until I could hardly breathe, and when my mother, sinking deeper, could no longer calm me down, the thought of my little boy and the tiny person I was supposed to be making usually did; I’d catch my breath, anyway; I’d pause to breathe. I wondered if a fetus could survive this sort of stress. Hang on, please just hang on, I thought, hand on my stomach, eyes on my mother.
I hovered over her in those final weeks, checked her feeding tubes, brushed her hair, added blush to her cheeks, and, later on, I sat towards her head and dripped water from a sponge, the slowest drips, every few minutes, onto her lips and her tongue.
What I wanted, every minute, just one more lucid moment with her, and then one more, until the day came when I was too afraid I’d waste her energy if she gave it to me. I begged my father to stop trying to make her talk because I wanted her around longer. He looked at me frantically and I covered my face, knowing full well I had chosen her stability over his.
And there I was, both daughter and mother to my mother, holding on for dear life.
The years following my mother’s death were uniquely lonely and humbling for all of us. I did not stop it – or even realize it – when Grace, in her infancy and in all her innocence, somehow took the reins and blindly guided us along. I welcomed her neediness, my hands in motion all day, changing diapers, offering milk, wiping spit-up, thrusting something new into the life of our family.
I never meant for Grace to help save us from our grief. But it couldn’t be helped. Born into a family in mourning, this six-pound morsel seemed to have passed her maternal grandmother in the night. Six months and seven days after our loss, here was Grace, reflexively grabbing our thumbs and not letting go, and we could not help but feel a relief akin to rescue. It was never fair, but it couldn’t be helped.
And now she is a child. I look towards this little girl and, it seems, I’ve created a miniature version of myself. I see her fine, scraggly hair and hear her raucous, unapologetic laugh. I watch her in her shyness, stepping back, observing, and I see her, in moments, tangle her words in her tongue and quickly ask me to erase what she said. I see her head in the clouds and her eyes on me and, as I look back at her, I see my own reflection.
But oh, how I want a map of her genes, to be assured that if we magnified her Chromosome 13, it would look exactly like her daddy’s and nothing at all like mine. Perhaps the day our coded strands were grabbed and combined at random was a lucky day for her. I am full of doubt, but for now, what more can I do but hold onto the chance that her shapely leg gene and her boisterous laugh gene lie on any other chromosome than 13? Perhaps her BRCA2 gene is entirely intact and we have somehow broken this wearisome, worrisome pattern.
Each morning, she slowly emerges from her room and walks downstairs, a late riser like me, with her arms outstretched. She’s getting big now, but I lift her up and she collapses in my arms. I pat down the thin layer of hair that covers her head, pull it out of her face and look at her. “I missed you last night!” I say, and it’s true. Because, after all, this is a love story. It is a love story with perhaps more complexities than other love stories I’ve been able to tell. It’s a love story between a daughter and a mother and a grandmother, though two of us have never met. Here are three Davis girls who, in and out of life, have held each other together, swapping roles, instinctively grabbing ahold of one another in desperation or support. Yes, we are daughters of BRCA, but more importantly, what runs through our blood is fierce love, an intuitive need to heal each other’s pain, an energy that endures on and on and on. We dance on until we’re entirely out of breath.
I was not there the morning my mother died. After weeks of sleeping on a hospice house couch, I began to think that if this baby did have any chance of surviving, I needed to spend my nights in my home, make steps towards some sense of balance. The last evening we spoke, she was barely conscious and impossibly weak; she had not moved on her own in days. I sat on the left side of the bed, leaned over her head and kissed her again and again. “I can’t say goodbye but I need to watch out for this baby,” I said. “I think I need to go home tonight, Mom. How can I go?” I laid my head and arms upon my mother’s tiny body and shook with sadness, soaking my face and her sheets. And then I felt a hand on my head, the gentlest touch, now smoothing my hair. I looked up and saw her face, drenched in tears, and I saw she was nodding. I will miss you so much, said the sorrow in her eyes. But you need to take care of my daughter and my grandbaby, said their twinkle, still alive, amidst the green. At some point that night, and I don’t know when, I lifted my head, rose from her bed, and slowly walked to the door.
Janet Hope Damaske is a stay-at-home mother with interests in writing, reading, editing and psychology. After earning her BA in psychology with a minor in creative writing at Hamilton College, she worked for several years at a rehabilitation center for people with mental illness, providing job training and running a writer’s group for creative therapy. She later moved onto a career in medical publishing, where she continues to work part-time. Janet currently volunteers with several non-profit organizations in her hometown of Winchester MA, where she lives with her husband and two children. She writes a blog, which can be found at http://jhdamaske.blogspot.com. This is her first published piece.