As I reflect on the whirlwind of experiences in 2019 at the age of thirty-six, I find myself contemplating the myriad of alternate paths my life could have taken. My eldest daughter, Mia, has been my steadfast travel companion, especially during a time when journeys extended beyond mere grocery runs. Now fifteen and thriving in her sophomore year of high school, Mia has taken on summer courses to get a head start on her college journey. She has a zest for travel that has only grown over the years.
Originally from Washington, our family relocated to Texas when Mia was just a year old, which sparked our frequent trips back home every couple of months for two years. Since then, flying has become second nature for her. It’s incredible to witness her growth through these experiences, as each new destination broadens her perspective and enriches her understanding of the world. What could possibly be worth trading for these moments of joy?
Tragically, when Mia was merely seven, we lost her younger sister, our youngest child, Lily, to a devastating genetic disorder known as Tay-Sachs disease. Unbeknownst to us, Lily was born with this terminal illness. We learned of her condition when she was ten months old, already facing a painful decline. In her brief three years, Lily transformed from a lively, curious baby into a child who required constant, specialized care as the disease took hold. By the time Tay-Sachs claimed her life, it had already stripped her of her sight, cognitive abilities, and speech, leaving behind a heartbreaking reality of paralysis and seizures.
Despite the overwhelming sorrow, there have been profound lessons to glean from our loss. It’s not always easy to recognize, but when we peel back the layers of grief, we uncover the blessings that came from our time with Lily. The depths of gratitude and humility we’ve gained are attributes that I believe would have eluded us otherwise. Our lives today bear the mark of her existence, guiding us to engage in activities and connections that we might not have pursued had she lived.
Last summer, I attended a writing workshop in Palm Desert focused on processing child loss, held in a vintage Hollywood mansion rich with history. Mia accompanied me, spending her time poolside or lounging on the lavish furniture while I joined other mothers on this shared journey of grief.
Now, Mia skillfully balances her time between online classes and working at a local bakery, all while completing her high school requirements and embarking on her college career. She aspires to become a geneticist, a path inspired by her desire to serve others and to honor her sister’s memory.
It’s easy to dwell on what we have lost, but I strive to focus on the beauty that remains in my life. If Lily were still with us, we wouldn’t have had the opportunity to gather in that mansion, nor would we have formed the connections that have enriched our lives. Our annual trips to Mexico to build houses for families in need have become a cherished tradition, as have my speaking engagements about genetic disorders, which have introduced me to a community of resilience in the face of loss.
This journey has undeniably been a challenge that has knocked the wind from my lungs, yet it has also propelled me forward, reminding me that grief is ultimately for the living.
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Summary
This piece reflects on the author’s journey through grief after losing her youngest daughter, Lily, to Tay-Sachs disease. It explores the bittersweet beauty found in loss, highlighting how the experience has shaped the lives of the surviving family members, particularly the eldest daughter, Mia. The narrative emphasizes the importance of focusing on the positive aspects of life while acknowledging the pain of loss.
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