MBP: When Asher was born, life took an unexpected turn with his medical diagnosis. Looking back, what was one of the biggest lessons that season taught you as a mom?
Cara: When you have a child that has medical complexities and disabilities from birth or a young age, it almost “steals” your motherhood experience. Instead of checking developmental milestones off your checklist, you’re learning how to become a nurse, therapist, dietitian, pharmacist, medical records keeper, etc., overnight. It’s hard to “turn off” all the new things you may be required to learn or keep up with if your child has medical complexities. I was constantly worrying, researching, or advocating for him instead of being able to just bond and learn how to be a mother.
Unfortunately, time passes and you can’t turn back the clock. I felt like a lot of his baby/toddler years were stolen from me. It taught me to truly value the time you have to make memories with your child and family. Also, regardless of any diagnosis or journey, I’m still a mother first.
MBP: What has your journey looked like as Asher’s advocate, and what advice would you give another parent who suddenly finds themselves advocating for their child?
Cara: To be transparent, the journey of advocating for another person’s life and body is not simple. There was not a course or manual offered. Advocating can be scary, exhausting, exhilarating, yet still very empowering. My advice to a family suddenly advocating for their child is to stand strong and trust the parent you were chosen to be. Sometimes we are the only voice our children may have.
MBP: You founded Asher’s Medical Supply Closet from your own family’s experience. What inspired you to turn a moment of overwhelm into a nonprofit that’s now serving so many others?
Cara: Asher’s Medical Supply Closet was a sudden thought that I had while I was organizing Asher’s personal medical supply closet. I was sitting in a pile of medical supplies that I did not need, wishing I knew someone else who could use my overstock. Within days, Asher’s Medical Supply Closet had its own website, Facebook page, and we applied for 501(c)(3) status with the IRS. Within a year of being founded, we have shipped supplies to 18 states and have saved families the financial burden of purchasing supplies they needed out of pocket. I serve alongside an awesome board of parents, some with children with disabilities, and healthcare workers. We are continuously growing and have big plans for 2027.
MBP: Your upcoming children’s book, If There’s a Wheel, There’s a Way, celebrates abilities instead of limitations. What message do you hope every child—and every parent—takes away after reading it?
Cara: I hope to inspire families and individuals that need wheels to get around to participate in activities they enjoy—to get outside, join a sports team, etc.—even if it means having adaptive equipment to do so. I encourage people to be creative and use their wheels to do something fun, travel the world, and do anything they desire to do or experience in this world.
MBP: What has Asher taught you about joy, resilience, or seeing the world differently that you never expected?
Cara: Asher has taught me a life I would have probably never experienced without him. He has experienced more challenges at such a young age than many will ever face in their lifetime. He shows up to do hard things with a smile. He keeps moving forward. He has taught me that inchstones rather than milestones are worth celebrating, and he has given me a gratitude for small things that we often may overlook because it does not directly affect every person. He has taught me that all people are precious and worth the life they live.
MBP: For families who may be walking a similar road with a medically complex child or a child with disabilities, what encouragement would you want them to hear today?
Cara: Since having Asher and being in the “disability world,” I have developed sweet and beautiful friendships with other mamas and even my son’s therapists or other people in his healthcare circle. Those connections and relationships, both locally and internationally, have made the path less lonely. We share the lantern light together to guide and light the path before us, sometimes alternating who holds the lantern for the other. In life we all experience hardships, and having community and people to relate to and go through similar journeys with is the best medicine. I always tell parents to find their community. We weren’t meant to do this alone.
Rapid Fire
Favorite family vacation spot? Disney World and Gatlinburg
Sweet or savory? Sweet
Morning person or night owl? Neither, 11 a.m.–7 p.m. lol
One word that describes Asher? Determined
One word you hope people associate with inclusion? Love
Cara Rain Lewis is passionate about special needs education, advocacy, and serving families in her community. She and her husband, Jarvis, have been married for four years and are the proud parents of their 7-year-old son, Asher, who has a rare genetic condition called ATR-X syndrome. Despite his physical and medical challenges, Cara Rain lovingly describes Asher as their family’s “sunshine on a rainy day.”
Cara Rain is a Parent Consultant with Children’s Rehabilitation Service, a nonprofit leader, and an active community volunteer. When she’s not advocating for families, she enjoys hiking, spending time outdoors, working out, and making memories with her family.
