Guest Voice: I’m leaving behind a legacy of love through letters
With my ALS progressing, I'm writing a letter to each of my grandchildren
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As I cuddle my newborn granddaughter in my arms at the hospital, I murmur to her, telling her that she is perfect and I love her. I tell her about her aunts, uncles, and cousins who are excited to meet her.
Despite the impact of bulbar-onset ALS on my ability to speak, I sense that the baby understands my mutilated phonemes at an intuitive level, somehow converting tone and intent into meaning as she looks deeply into my eyes.
As I study her wispy dark hair, round eyes, and sweet mouth, curved upward into a shy smile, one thought is inescapable, drilling into my brain like a power tool through concrete: She will never remember me.
Thinking about my legacy
My disease marches steadily on, unforgiving in its progression, peppered with daily reminders of new challenges and hints of what is still to come. As this grandchild matures and starts to ask questions about her family, will she only know me through pictures, stories told around the dinner table, and an array of uncurated belongings?
My older grandchildren will be able to tell funny stories from their own experiences with Nana, such as making gem-studded crafts, dancing in the family room, and playing hide-and-seek throughout the house.
Sounds like a plan is needed.
I am now writing a letter for each grandchild, to be held by their parents until they are grown. I am also writing letters to future grandchildren so they will know that I not only imagined them but already loved them while they were still just a lively sparkle in our children’s eyes.
Each letter will include something about my personal history and life experiences, information that might not make it into regular dinner table conversations.
For example, I will describe taking a college job as a night-shift board operator at a popular Los Angeles rock station. This role involved working with some of the most iconic radio personalities of the time — an experience that was both exhilarating and absolutely terrifying for a naïve 20-year-old girl. But that job taught me how to push through my anxiety, even after I accidentally turned off the radio station. Twice.
I will describe the important values that have shaped my perspective. I want my grandchildren to understand that failure is often a more profound teacher than success. I will suggest that they embrace failure with gentle acceptance, curiosity, and a drive for understanding that eases the sting of disappointment from a fall and moves them toward a future that feels broad and unlimited.
I will remind them to embrace and remember the highs in life to sustain them when they hit the lows.
I pray that my children and grandchildren will have lives filled with joy, love, and happiness. But no life is authentic without acknowledging the walls that we can hit at full force that make us slide down in pain and confusion. Whether it’s a surprise diagnosis, the loss of a loved one, or a disturbing ground shift beyond our control, it happens to us all. It is in these valleys that resilience is forged and the light of the “highs” becomes a North Star rather than just a memory.
They should know that most people are good and not let the small percentage of bad people color their perception of humanity. The quiet majority is built of simple acts of kindness, shared community, and a collective desire for peace. Living with an open heart is a courageous choice to see the world as it really is, where goodness remains the standard, not the exception.
I will remind them to leave the world a better place than they found it by teaching them that true success isn’t measured by what they acquire in life but by what they contribute. Even the smallest acts of kindness — such as helping an ailing neighbor, providing a meal to a hungry stranger, or devoting time to a worthy cause — ripple outward in ways they may never see, leaving behind a glowing legacy of light and meaning.
I hope they will express love and gratitude every chance they get, which will allow them to speak their truths in the moment, leaving no room for “what-ifs” or the burden of things left unsaid.
From my own experience, a life anchored in open affection and steady gratefulness creates a legacy of warmth and connection, paving the path forward with kindness rather than missed opportunities.
I will finish each letter with a statement of love to serve as a constant anchor and a quiet promise that no matter how much time passes, my affection and commitment to them remain the final word.
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