When I was fourteen years old, I remember consciously deciding I wanted to distance myself from my mom. She was everything to me. My life seemed to depend on hers like the umbilical cord that once connected us. If I lost her one day, how would I survive? The idea of that heart break forced me to this conclusion. But I faced reality and my conviction faded. Over the years, I have become even closer to my mom. We’ve often joked that we may not have been friends if we were the same age, but our relationship as mother and daughter has been unbreakable. The soil that my flower of life has grown from.
When I close my eyes and think back to the biggest moments in my life, the good and the bad, there is my mom right by my side. As I labored to give birth to my children, it’s my mom that I remember rubbing my back, holding my hand in the tub, advocating to the midwives and doctors to represent my voice. She was there to hold my babies when they entered the world, rocking their warm little bodies in the chair by my bed. In a low hum, she sang the soothing words from my childhood, Dona Nobis Pacem, as my little ones drifted off to sleep.
After shattering my ankle and undergoing surgery with pins and plates jammed into my bones, it was my mom who nursed me back to health, who cooked every meal for me for weeks, who gave me my medicines and showered me. When I was hit by a car while riding my bike, she was the one calming me down on the phone as I made my way to the ER in the ambulance.
She always seemed to find ways to show me what life had to offer. In high school, she could see the yearning in my eyes to learn about the wide world beyond my own. She found a community service program in Costa Rica and saved the money to send me there. That summer, I headed off and lived outside the US, briefly, for the first time. I built aqueducts, mixed cement and laid a new park, taught English and painted a church in a tiny town tucked into the rain forest on the border of Nicaragua. I made friendships with people I may have never crossed paths with otherwise. I came back home with a different, more healthy view of the world. A big step in the direction of becoming me.
Toward the end of college, everyone around me flocked to the booming internet industry of the late ‘90s. But my mom could see that I was drawn to live and work in Italy, the place so beautifully described by my Italian grandparents as I grew up. Despite moving an ocean away, she supported me. In the seven years I lived in Italy, I watched the world news unfold through a different country’s perspective. I learned the importance of hitting pause each day and stopping to talk with the fruit and vegetable vendors in the piazza below my apartment. And I realized happiness can come from just wandering through the streets on a Sunday followed by a seemingly never-ending meal together with friends. Looking back, I now understand that my mom encouraged me because she knew how greatly this experience would shape who I am today.
Later, in my life as a mother, she walked the difficult years with me as Mila started struggling with her vision, talking, walking, eating. I was never a fast reader, so for every book I managed to read on the brain, she would read five more and report back. Over the years, we compared notes, wrote lists, and researched how to meet Mila where she was at. She joined me on countless occasions to Boston, Chicago and DC for doctor’s appointments. She met me in Toronto for therapies. She flew out to Colorado every time she could feel I was barely able to stand, to feed my children, to get enough sleep to keep going. Each time I needed her, she was there. All while working a full-time job that allowed her to pay the high school and college bills that had piled up for me and my brothers over the decades.
And four years ago today, when I carried my weak little Mila in my arms out of the hospital after a battery of tests that lasted one week, my mom was on a plane before we got home. Mila’s skin was pale. Her eyes were pink. And her body was limp. The hospital stay had taken an enormous toll on her. We were told she had a serious genetic condition, and the final diagnosis would come any day. A week later we were told Mila would lose every ability and die in the next few years. My knees buckled and I crumbled to the floor. But my mom held me up. She was there to make meals, play with my kids, keep up my hopes and encourage me to start a foundation and tell our story to the world. She allowed me to be a mother by day and a fundraiser and scientist by night. She believed in my fight, but most importantly, she believed in Mila.
When Mila’s treatment became a reality, my mom was the first person I called. And as soon as we moved to Boston for the first six months of Mila’s trial, my mom and dad were there to greet us. They stayed for a few weeks, then went back home to DC to work, then came back every few weeks to help take care of my kids, cook, clean and join me in the hospital for support. My mom was by my side during those months where I found myself pushing Mila in her stroller through the back halls of Boston Children’s Hospital.
But never did I imagine that one day I would leave Mila’s hospital room to walk those same halls alone, crossing over the glass bridge into the Dana Farber Cancer Institute next door to visit my mom in her own clinical trial.
The image of that warm Spring night last year is burned into my memory. One that seemed impossible after everything that I was going through. Our family sat on my brother’s back patio in DC, eating, laughing and dancing to my parents’ favorite tunes. I had just presented to a large group at the FDA with Tim earlier that day, and for the first time I could feel that the blood, sweat and tears that went into Mila’s treatment might actually offer a new path for children like Mila. Real hope across thousands of rare diseases. The meaning this gave to Mila’s life, to my own, to the world had me smiling all day.
But after dinner that night, I walked down the stairs from the house to the patio and saw my mom sitting on a chair, an uncomfortable smile on her face. “I have something to tell you all.” She paused, “It’s not a good thing.” Her face gently smiled, her voice was calm. But I could hear an unfamiliar stagger as she carefully chose her words, “I have non-smoker lung cancer. And it’s stage 4.”
That night, I cried harder than I ever have. The pillow and sheets of my childhood bed were drowning in my tears. As the hours passed, I gasped for air. In the darkness of my mind, I watched myself as I stood on a quiet dark stage, alone, under a dim light. On my right, appeared my dying daughter. On my left, my dying mother. Our heads bowed, our arms wrapped around each other as we pulled our bodies close. A triangle of love and tears.
As I write this, my mind returns to that moment when I was fourteen. I laugh at the immature plan of breaking away from my mom to save me from eventual pain. But then I allow myself to remember the feeling I had conjured up decades ago. My heart sunk. Here I am. In that exact place I had fought to avoid. But with this pain came years and years of laughter and tears, of conversations and ideas, of fantastical stories and songs to my children, of walks and hikes, of fears and dreams.
In those first few months of her clinical trial, I would run through the hallways between Boston Children’s Hospital and Dana Farber. I would lie with Mila in her hospital bed and sing her songs, read her books and find toys from the hospital play room that she might be able to feel and make sense of. Then I would call in a nurse to sit with her while I made my way through the hallways to my mom in the building I could see from Mila’s window.
Over the past year and a half, my mom’s trial successfully shrunk her tumors. Life was looking up and she felt great. Until, just recently, when the cancer began to spread.
This morning, my mother began chemotherapy.
I couldn’t be there for her because of COVID. And I can’t be there with her for Christmas. A day that I’ve spent with her 43 of the the last 44 years of my life.
Just at a time when I face the depths of my journey with Mila, I find myself in a place like no other. I wake up each day and force myself to say out loud that today is a new day. The sun will go down tonight, and tomorrow morning it will rise. The day will pass, with laughter and with tears. And then the sun will go down again. Somehow, this image has helped me. Some days, it’s hard to imagine, but I know life will go on. And the deep and often dark experience that I am living through now is like the setting sun. Tomorrow, the sun will rise again.
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