At thirty-six, I often reflect on the summer of 2019, a time when life felt vibrant and full of possibilities. My oldest and only living daughter, Mia, used to be my constant travel companion—she still is, when travel isn’t limited to grocery store runs. Now fifteen, she’s well into her sophomore year of high school and has taken summer classes to earn credits early, preparing herself for college. She has a passion for exploration, and it has been a joy to witness her growth through our adventures.
As a lifelong resident of Washington State, our family made a temporary move to Texas when Mia was just a year old. In the following two years, we returned to Washington every couple of months, laying the groundwork for her love of travel. Watching her absorb new experiences has been a breathtaking journey. What price could one put on these memories?
Tragically, when Mia was just seven, we lost our youngest daughter, Lily, to Tay-Sachs disease, a devastating genetic disorder that we didn’t know she had at birth. We were informed when Lily was ten months old, and by then, she was already experiencing a decline in her abilities due to the relentless progression of the illness.
In her brief three years, Lily transformed from a lively baby into a child who required specialized care, ultimately being robbed of her eyesight, cognitive abilities, and speech, replaced by paralysis and seizures.
Yet, amidst the pain of our loss, we have unearthed unexpected beauty. It can be challenging to recognize, but when we look beyond the sorrow, we see the blessings Lily brought into our lives. Our experiences with her have instilled a profound sense of gratitude and humility that we might not have known otherwise. Everything we do today is influenced by her life and death. The haunting “what ifs” linger—would I trade it all to have her back, healthy and with us? Absolutely, but I have no choice in the matter. I am left to navigate the life I have been given.
Last summer, I participated in a writing workshop in Palm Desert centered on coping with child loss. Held at a stunning vintage Hollywood mansion, Mia joined me, working on her homework while I engaged with other mothers who shared similar experiences.
Now, Mia has adapted to a hybrid education model, balancing her high school studies and a job at a local bakery. She aspires to become a geneticist, driven by her desire to help others and honor her sister’s legacy.
It’s easy to dwell on what we’re missing, but I strive to concentrate on the beauty that life still offers. If Lily were still here, we wouldn’t have had those experiences, nor would we have traveled to Mexico to assist families in need. I wouldn’t have shared my story with various groups or built connections with those who understand our loss. My work with families facing similar challenges stems from this journey. I’ve learned invaluable lessons about compassion, resilience, and grace.
While this grief has knocked me down, it has also propelled me forward. After all, grief is for the living.
For more insights on parenting and coping with loss, you might find this post helpful. Additionally, if you’re looking for reliable information about home insemination, check out this excellent resource from the CDC.
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Summary:
In the face of unimaginable loss, Angela Thompson reflects on her experiences after losing her youngest daughter, Lily, to Tay-Sachs disease. While grappling with grief, she emphasizes the beauty and growth that can emerge from hardship, focusing on the blessings that have come from their journey. Through personal anecdotes and insights, she illustrates the resilience of the human spirit and the importance of cherishing life’s moments.