By: Liz Scott
Today marks 19 years since my daughter Alex passed away. Every year, I find myself commenting that I don’t have something new to say. After all, the details of Alex and her life story hasn’t changed. This year in particular, with the release of the Barbie movie, I have been thinking of Alex and her love of Barbie. We spent hours together playing with Barbie dolls; Alex’s preferred doll was Stacie, Barbie’s little sister, so I often got to play the role of Barbie, the big sister. Stacie and Barbie got us through many long days at the hospital and too many days of Alex not feeling well enough to do much else. Alex slept with Stacie for a couple of years; I think she maybe took comfort in Stacie as the healthy little girl — something Alex never experienced in her own life.
So, with the release of the Barbie movie and my feed filled with photos of 20-somethings (and much older) attending the movie, I couldn’t help but think of Alex and smile at the thought of us going to see it together. I miss what could have been for sure, but in my heart she is still that young girl.
And I don’t want the world to forget that Alex was just a little girl, who was placed in an impossible world.
Alex’s cancer, neuroblastoma, is one of the most common and most difficult childhood cancers to treat. She fought hard for herself for over seven years, enduring treatment after treatment, procedure after procedure, hospital stay after hospital stay. She taught herself to walk after surgery paralyzed her. She planned herself surprise parties and dreamed of going to Paris in between clinic visits. She wanted life — but then when her battle was coming to an end and it was apparent a cure was not an option, she shifted her dreams from her own life to cures and life for other children.
She was still just a little girl, not even a third grader yet, when she died and left behind an entire movement to find cures for childhood cancer. It’s hard, even as her mom, to wrap my head around this. It is so huge what Alex did and what her story continues to do.
I always try not to dwell on what could have been for our family if Alex survived. Sometimes this is impossible. It is not just the little moments, like wishing she was here to see a movie with me, hang out with her dad, or give sisterly advice to her brothers, but the big questions like: who would Alex have been had she survived? Would she still have been holding lemonade stands? Who would she have become? But, that exercise takes away from the reality I am left with. I miss my daughter even when life is good. So much time has passed without Alex. Her older brother and her younger brothers are now grown up. We’ve kept going — living lives that we wish Alex could live with us.
It is an insurmountable loss for our family. I can never minimize that pain by pointing to the beautiful legacy Alex left. But I can find my way through by remembering how Alex lived and how her life story continues to bring joy and direction to our lives. Alex still gives me gifts everyday, especially when I get to see a child who battled cancer living and thriving and in the arms of her mother. It was the wish I had for myself, but like Alex taught me, sometimes you have to shift your dreams and find the path forward to other dreams.
I miss you Alex. We are so proud of you and the dreams you left behind for us to fulfill.
