At the age of thirty-six, I look back to 2019 and after a particularly busy summer of traveling, I consider the potential alternate realities of the life I will never live. My oldest, and currently, only living daughter, Skylar is my consummate travel companion; or rather, she was, back when people were still traveling further than the grocery store. Having just turned fifteen at the end of the summer, she was already well into her sophomore year of high school. She’s taken two summer school courses this year to advance her credits in an effort to finish her high school requirements and begin college early. She’s used to traveling, and she loves it.
As a native Washingtonian, when we temporarily moved to Texas when Skylar was just one year old, we traveled back to Washington on an average of once every two months over the next two years. From that time to the near-present, she’s been on planes several times a year ever since. I love seeing her mind cracked open, the new experiences she’s a part of because of it and the way it’s helped shaped her views and expand her horizons with each new location we visit. Watching her grow, mature, and flourish simply takes my breath away.
What would you possibly want to trade for these opportunities?
When Skylar was only seven years old her younger sister, our youngest daughter, and only other child, Miss Elliott passed away from a fatal recessive genetic condition known as Tay-Sachs disease. Unbeknownst to us, she was born terminally ill. We found this out when she was ten months old, and a relentless regression of her abilities — a progression of the disease itself — was already well underway.
In her three short years, Miss Elliott would go from curious, bouncing baby, to eventually needing highly specialized twenty-four-hour care as she slowly slipped away from us. By the time Tay-Sachs disease would rob her of her life, it would have already completely stolen her eyesight, mental cognition, and the ability to verbalize, replacing them with paralysis, seizures, and difficulty swallowing instead.
Still, there’s been such beauty to be extracted from our loss. It’s often difficult to see, but when we peel back the layers of pain and sorrow, we find that we were afforded so many blessings in our time with her. We know a gratefulness and humbleness of spirit I’m certain wouldn’t have otherwise even come into our periphery. There’s so much in our lives today that we have because of her, and so much we do that we wouldn’t if she were still here. It’s a horrible reality. A juxtaposition of today with the what ifs and could have beens. Would I take it all away in a heartbeat to have her back? To have her here with us, and healthy? To live a simple life of unabashed monotony? How glorious! Without question, but I don’t have the luxury. There’s no exchanging the cards in holding. I’m simply left to play the hand I’ve been dealt.
Last summer, I attended a writing workshop in the Palm Desert that was focused on writing through child loss. It was held at a glamorous old Hollywood mansion, owned by a friend of the instructor, where notable figures have stayed over the years and you can find celebrity signed photographs, scandalous telegrams, and Academy Awards haphazardly stowed away in random drawers. Skylar tagged along with me. While I toiled away with seven other mothers of loss, writing about grief, and life as colored by it, she sat by the pool or lounged on the ten-thousand-dollar Billy Haines canary yellow sofa and toiled away at her homework – day in and out.
Today she deftly splits her time between Zoom school and working as a bread maker at a local small business bakery. Toiling through her first year as a college freshman and finishing up those high school requirements simultaneously. She aims to be a geneticist one day, a career inspired by her love of being in service to others and in honor of her sister’s life.
It’s easy to become fixated on what it is that we’re missing, but I can’t change any of it, and thus, I do my best to focus on the beauty I have been afforded in this life instead of the devastation. If my youngest daughter were still here, we wouldn’t have been at that mansion; we wouldn’t know those people. We wouldn’t be able to repeatedly travel to Mexico for a week at a time each year to help build houses for families in need. I wouldn’t have spoken to various groups on genetic diseases or been thrust into a community of loss. I wouldn’t have written the book about her life and learned the lessons I’ve learned. I wouldn’t have been as struck by the gracious humanity of others. I wouldn’t have been humbled by my unalterable circumstances. I wouldn’t have been shown the kindness of grace on my bad days or learned to show it to others on my good. I quite literally wouldn’t have the career I have; working for the organization that supports families with diseases like the one my daughter had. And I truly don’t think I would have had the opportunity to see into the realm of the capacity for human compassion without this form of personal hardship. This unimaginable loss.
This experience has, in every way knocked the wind out of my lungs but has carried it to my sails because, after all, grief is for the living.