My journey as a caregiver began long before I realized I was one. In July 2000, just before my tenth birthday, my mom was diagnosed with scleroderma. At an age when most children worried about homework, birthday parties, and sleepovers, I began learning what it meant to love someone living with a chronic illness.
I wasn't a traditional caregiver. My mom remained remarkably independent for most of her life, despite everything scleroderma took from her. She continued to live life on her own terms for more than two decades, and it wasn't until the last six months before she passed away in February 2024 that she truly needed more hands-on care. But caregiving isn't measured only by the physical tasks you perform. Sometimes it is measured by the way you learn to adjust your life around someone else's needs, quietly and consistently, over many years.
Growing up, I learned that every outing required a little extra planning. A simple trip to the grocery store or running errands meant thinking about whether there would be places for my mom to sit and rest if she became tired. I learned to slow my pace, understanding that her body couldn't always keep up, even if her spirit wanted to. Patience became second nature. Flexibility wasn't something I practiced occasionally—it became a way of life.
Living alongside my mom's illness also taught me to notice the things others often overlooked. I learned to recognize when she was pushing herself too hard, even if she insisted she was fine. I understood that some days would be better than others and that plans sometimes had to change. Those experiences taught me empathy, compassion, and the importance of meeting people where they are rather than expecting them to meet me.
When my mom's health declined during the final months of her life, our roles naturally shifted. The lessons I had been learning since childhood prepared me to be there for her in new ways. While those months were incredibly difficult, they also reinforced what I had known all along: caring for someone isn't defined by a single season of life. It is built through years of love, patience, understanding, and showing up in countless small ways.
Looking back, I realize my mom taught me far more than I ever taught her. Through her resilience, determination, and grace, she showed me what it means to face adversity without losing hope. Watching her navigate a disease that so few people understood shaped the person I have become. It has made me more compassionate, more patient, and more aware that everyone carries challenges we cannot always see.
My caregiving journey wasn't about dramatic moments or extraordinary sacrifices. It was about growing up with the awareness that someone I loved needed the world to move just a little more slowly. It was about learning that love often looks like waiting without complaint, adjusting expectations without resentment, and finding joy in the moments you have together.
Although my mom is no longer here, my caregiving journey did not end when she passed away. Even now, two years later, I continue to fight for a future where no family has to experience what ours did. In my mom's memory, I serve on the New England Chapter's Advisory Committee, facilitate a scleroderma support group for caregivers like me, volunteer at walks and national conferences, and this year I have the incredible honor of presenting at the national conference about supporting loved ones living with Scleroderma. Every conversation, every event, and every person I meet is another opportunity to raise awareness, support those living with this disease, and advocate for a cure.
These roles are more than volunteer positions—they are a continuation of the promise I made, both to my mom and to myself, that her journey would not be forgotten. By sharing her story and standing beside others affected by scleroderma, I hope to bring comfort, inspire hope, and contribute to a future where this disease no longer takes the people we love.
I know my mom is with me in every step of this work. She is present in every family I support, every event I help organize, every story I share, and every effort to advance research and awareness. Her strength continues to guide me, and her legacy lives on through my commitment to this community.
Scleroderma may have shaped my childhood, but it also shaped my purpose. My mom's journey became part of my own, and because of her, I have found a lifelong mission: to advocate, to educate, to support, and to fight until there is a cure. Everything I do is in her memory, and I carry her with me always.
