Updated: June 25, 2021
Originally Published: November 9, 2020
Now at thirty-six, I reflect on 2019 and the whirlwind of experiences that followed a summer filled with travel. My eldest daughter, Lily, has been my steadfast travel companion throughout the years—well, at least she was until travel became a distant memory reserved for grocery runs. Recently turning fifteen, Lily is deep into her sophomore year of high school and has taken on two summer courses to earn credits, eager to begin her college journey early. She thrives on adventure, and I cherish the moments we’ve shared exploring new places together.
As a Washington native, our temporary move to Texas when Lily was just a year old led us to travel back home every couple of months for the next two years. Since then, our journeys have continued, and it’s been a joy to witness how each trip broadens her perspective and shapes her character. Watching her grow into a remarkable young woman is truly awe-inspiring.
However, life took a drastic turn when Lily’s younger sister, our youngest child, Grace, lost her battle to Tay-Sachs disease at just three years old. We were blindsided by the news of her terminal condition when she was only ten months old, and we watched helplessly as she regressed, eventually requiring specialized care. Tay-Sachs ruthlessly took away Grace’s sight, cognitive abilities, and voice, leaving behind only paralysis, seizures, and difficulty swallowing.
Despite the overwhelming sadness of our loss, we’ve unearthed moments of beauty amidst the grief. Though difficult to perceive at times, peeling back the layers of sorrow reveals a profound appreciation for the time we had with Grace. Her brief life has infused our lives with humility and gratitude that we might never have fully grasped otherwise. The bitter irony of our situation remains: while I would do anything to have Grace back, the reality is that I must play the hand I’ve been dealt.
Last summer, I attended a poignant writing workshop in Palm Desert focused on navigating the grief of losing a child. Set in a glamorous old Hollywood mansion with a storied past, the workshop was a space for me and other grieving mothers to share our experiences. Lily joined me, balancing her homework by the pool while I engaged in deep reflection and expression of my sorrow.
Now, she juggles her time between online classes and a job at a local bakery, determined to finish her high school requirements while embarking on her college journey. Inspired by her desire to help others and honor her sister’s memory, she dreams of becoming a geneticist.
It’s easy to dwell on our losses, but I’ve learned to redirect my focus toward the beauty that remains in my life. If Grace were still with us, we wouldn’t experience the connections we’ve made or the opportunities that have arisen. Our travels to Mexico to build homes for families in need, my work with families facing similar challenges, and my writing about Grace’s life have all stemmed from navigating this unimaginable loss.
While this journey has often knocked the breath from my lungs, it has also propelled me forward. Grief is indeed for the living, and we find strength in the love we continue to share.
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- How to cope with the loss of a child
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Summary:
This article recounts a mother’s poignant reflections on life after the loss of her youngest daughter, Grace, due to Tay-Sachs disease. Through her journey of grief, she discovers unexpected beauty and gratitude, emphasizing that while loss is devastating, it can also lead to profound personal growth and connection.