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A Mom living with ALS
Friends, I read a story in 1440 Media recently that truly stopped me in my tracks. Sara, battling ALS, a cruel disease, is losing her ability to move and speak. Yet, at 39, she's creating two giant scrapbooks for her sons, 9 and 7.
These aren't just scrapbooks. They're "guidebooks to life." Her wisdom, traditions, lessons on purpose – everything. A mother's fierce, boundless love, poured into pages.
This, my friends, is the heart of SilverWalk.LIFE. It's the ultimate act of love. More than documents, it’s about passing on who you are, your essence. Sara's story isn't about the inevitable; it's about the unforgettable. It's why we must stop hoping, start guaranteeing our stories and guidance endure.
You might not write scrapbooks, but are you ensuring your voice, your wisdom, your practical guidance is laid out for those who will miss you most? Do you have a secure system for all the vital pieces of your life, practical and personal?
Here it is in full, though I've not included her surname or the names of any of her family or nurse.
“I know it won’t ever feel like enough, but it was the most important work I’ve ever done."As Sara approaches her death from ALS, the 39-year-old mother is leaving her two sons a final, loving gift: her words.
As ALS, amyotrophic lateral sclerosis, a progressive neurodegenerative disease, has stripped away her ability to speak, move, and even chew, she has poured her love for her sons into two giant scrapbooks filled with her wisdom and encouragement — everything from "ranch does taste good on almost everything" to "kindness is golden."
One of the 100-page scrapbooks she’s written for her two sons aged 9 and 7, is already complete, and the other is nearly so. Both are labours of love, weaving together everything she hopes to pass on from traditions and holidays to friendship, politics, dating, and lessons on living with purpose.
“I wrote them letters for special days because I asked people who had lost parents what they wanted most from them,”. “I’d write a sentence and sob. But little by little, sometimes at 3 a.m., I wrote them. For weddings, pregnancies, graduations, the first and last day of school. I even wrote one for a grandchild I may never have.”
Sara composed her books and can only speak now using eye-gaze technology, a system that allows a person to control a computer or speech device by tracking their eye movements to select letters, words and phrases.
These are some excerpts, Rachel shared:
Lessons on Happiness
“Find what makes you feel like time passes quickly, and do this more. I called this flow. When I would teach, I would lose track of time. You’re not going to love everything you do, but you will find things that are 'deposits in your bank.' Keep playing and find things that bring you joy.”
Chew with your mouth closed.
Yes, ranch does taste good on almost everything, but it’s messy, so use a napkin.
PE clothes should be washed more than once a week.
Be you. Trying to be cool is totally uncool. Square pegs end up changing the world.
Kindness is golden.
Sara 's mother calls her daughter a "master teacher," saying she has lived her life with "deep love, optimism, passion and strength."
Leaving a Legacy
Sara, who taught high school social studies in Columbus, Ohio, for 15 years, continues to educate. On social media, she shares her ALS journey to help others prepare themselves and their families for loss.
True to her meticulous nature, Sara began what she calls her “legacy work” soon after learning she had ALS in March 2023, determined to use whatever time she had left with purpose.
She also left instructions for her husband and for the village that has stood beside them.
“I’ve divided tasks for friends and family,” Sara says. “No one can replace a mama, but there are so many people I value, who value what I care about, and who are committed to seeing it through.”
In videos, Sara is cheering on her sons at baseball games, smiling and fully present despite excruciating fatigue, pain and the stifling body heat that she cannot regulate due to ALS. On family excursions, she focused on the joy surrounding her. As she wrote on Instagram after a trip to an amusement park, "Observing instead of participating never gets easier. But I was part of it."
When Sara speaks about her love for her family, she calls it "limitless, honouring, and the easiest thing I've ever done."
What we can all see
More than 85,000 people on Instagram have watched in awe as Sara continues to show up for her sons, again and again. Though she can no longer move or speak, she planned birthday parties, organised an early Christmas, and even ordered “Minecraft” Halloween costumes months ahead.
Her hospice nurse, now one of her closest companions, has had the honour of witnessing that devotion up close.
“There isn’t anything that holds this woman back for her boys”. "I’ve been here for the best of it and the worst of it and there have been days when I know she didn’t want to get out of bed. But come hell or high water, if those kids were doing something, she was going to be there.”
“In all my years doing this, I’ve never seen anyone so connected to their family while in so much pain,” the nurse said through tears. Sara’s crying, too. “If the boys are in the backyard and we're upstairs, Sara somehow knows exactly what’s happening and she’ll tell me to go out there and fix it. She’s still the mom.”
“My hospice nurse and good friend has the tenderness of a mother, the support you’d expect from a lifelong friend and the protective nature of an older sister," Sara wrote in a letter about her nurse.
Asked what qualities she hopes her two boys will carry with them as they grow up, Sara smiles.
“Kindness, optimism, integrity and humour,” she says. “People who serve others are more resilient, so I hope they continue to grow their interest in giving back.”
What Sara's family sees
Sara’s father, and her stepmother shared a story about a birthday card their grandsons made for a cousin.
“Their dad said, ‘Go make a card,’”. “And they came back with this note they’d written, listing everything that’s wonderful about her.”
“Unprompted, they took it upon themselves to write out all the things they love.”
“We tell Sara all the time, these boys are going to reflect your love and joy for the rest of their days."
Recently, Sara woke up and told her nurse, “I know this is it,” an acknowledgement her time is drawing near. In a recent Instagram video about Halloween she wrote, "I won't be here for trick-or-treat."
But she will always be with her family, in spirit, in the lessons she taught and in the books they can turn to whenever they need their mom.
“When I got sick, I started writing everything I could to help guide you and remind you of my words throughout your life,” Sara wrote. “I know it won’t ever feel like enough, but it was the most important work I’ve ever done (other than being your momma).”
A well-planned Digital LIFE file is not just an act of kindness for your future beneficiaries. As Sara's story tells us so beautifully, it’s an act of self-care that brings order, security and peace to your life today.
An organised Life - an organised legacy - the LIFE file
Gary
Mike
Gary is a life-long learner and avid neuroscience nerd. He works as a coach to organisations, groups, and individuals. He supports mental health training and care. A strategic thinker with an operational career - he knows how to structure and organise an intentional life.
After losing family members and friends - he understands not just the pain of losing a loved one, but the pain of an unorganised legacy.
At the age of 71 my rollercoaster ride hit a snag: cancer. Inoperable but no symptoms. I thought of the hurt my family would face. But their "I love you, Papa" showed me two tracks: regret or a path lined with love. I chose love. Luckily, my diagnosis, low-grade lymphoma, means I might die of old age first!
That scare taught me two things - savour every moment and make sure my life and what I leave behind are organised.
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