As I reflect on 2019 from my current vantage point at thirty-six, I find myself contemplating the alternate lives that may have been. My eldest daughter, Emma, once my steadfast travel partner, has grown up. With her fifteenth birthday behind her, she has immersed herself in her sophomore year of high school and taken summer courses to accelerate her education. Emma has always enjoyed traveling, and our adventures together have been cherished experiences.
Originally from Washington, we moved to Texas when Emma was just a year old. Over the next two years, we made frequent trips back to our home state, and since then, air travel has been a regular part of our lives. Witnessing Emma’s growth and the way new experiences have shaped her perspective has been a profound joy for me.
However, our family has endured unimaginable heartache. When Emma was just seven, our youngest daughter, Lily, was diagnosed with Tay-Sachs disease, a devastating genetic condition that we were unaware she had at birth. By the time we learned of it when Lily was ten months old, she had already begun a heartbreaking decline. In her brief three years, Lily transformed from a lively, inquisitive baby into a child requiring constant care, as the disease took away her sight, cognitive abilities, and ultimately, her life.
Despite this profound loss, I have discovered unexpected beauty amidst the sorrow. It can be challenging to recognize, but when I look beyond the grief, I see the blessings that arose from our time with Lily. Our experiences have instilled in us a deep sense of gratitude and humility that we might not have otherwise known. The reality of our lives today is intertwined with Lily’s memory; much of what we do is influenced by her absence. Would I trade it all to have her back, to enjoy a life of simple pleasures? Absolutely. Yet, I understand that this is a reality I cannot change; I must navigate the life I’ve been given.
Last summer, I attended a writing workshop in Palm Desert focused on coping with child loss, hosted in a stunning old Hollywood mansion. Emma accompanied me, spending her days by the pool or working on her homework while I explored my grief through writing alongside other mothers who had also lost children.
Currently, Emma is balancing her first year of college with her high school requirements, working at a local bakery, and aspiring to become a geneticist in honor of her sister’s life. This journey has taught me to focus on the beauty that remains rather than dwelling on what we’ve lost.
If Lily were still with us, we wouldn’t have had the opportunity to meet remarkable people or engage in meaningful work, such as our yearly trips to Mexico to help families in need. My career supporting families affected by genetic disorders would likely not exist without the experiences that came from losing Lily. It is through this hardship that I’ve gained insight into human compassion and resilience.
This journey has knocked the wind out of me but also given me the strength to sail forward. After all, grief is meant for the living.
For more on this topic, check out this related blog post here. If you’re interested in fertility, Make a Mom offers valuable insights into the process. Additionally, the World Health Organization provides excellent resources on pregnancy.
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Summary:
This article recounts a mother’s journey through the grief of losing her youngest daughter, Lily, to Tay-Sachs disease. It reflects on the profound impact of loss on family life, as well as the unexpected beauty and growth that can arise from such experiences. The author emphasizes the importance of focusing on the blessings that remain and the lessons learned through hardship, ultimately highlighting that grief serves a purpose for those who continue to live.
Keyphrase: Coping with child loss
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