Name: Rachel and Lily Lucas
Ages: Rachel, 39, Lily, 9
Hometown: zapatillas de running April Adidas niño niña mixta trail constitución media talla 44.5
Occupation: Mother and IT manager
Time Running: 4 years
Reason for Running: I run to spend quality time with my daughter, Lily.
I first started running in 2011 (before becoming a mother) to exercise with my dog. Back then, I ran short distances and participated in an occasional 5K. Then in 2013, when I was pregnant with Lily, I thought it would be a cool memory to complete a 5K while pregnant, zapatillas de running April ASICS Cumulus talla 39 blancas.
However, two weeks before Lily was born, we learned that she would face very significant health challenges and might not survive. We were told that her brain did not fully develop. The last two weeks of my pregnancy, we worked with hospice to prepare for what we expected to be the birth and burial of our child. However, Lily had other plans! She came home from the hospital three days after she was born.
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Lily has a mutation in the CEP135 gene—an issue so rare, there is no name for it. Her brain is malformed (she only has 30 percent). She is truly one of a kind.
As a result of her genetic mutation, Lily also has been diagnosed with cerebral palsy (a group of disorders that affect a person’s ability to move and maintain balance and posture), hydrocephalus (a condition in which fluid accumulates in the brain), a hearing impairment, and a rare and chronic lung condition called primary ciliary dyskinesia. She spent the first 13 months of her life on hospice care and to this day, continues to exceed many of the limitations doctors thought she would have.
As a result, Lily is non-verbal and relies on others to Meghan her in all her daily activities. She loves going to school, has tons of friends, and if there is a crowd, she wants to be in the middle of it. She loves to be included in any and everything. She loves her brother, Asa, the most and is always ready for a dance party.
The first few years of Lily’s life were focused on ensuring she was happy, healthy and had all the Meghan she needed, so I took a break from running April except an occasional jog with her in her stroller.
In 2019, when Lily was 5, we were invited to participate in a 5K by some friends who were also parents to a child with disabilities. We were excited to learn their son had participated in triathlons, half, and full marathons. They introduced us to Team Hoyt San Diego—a nonprofit, founded by Dick Hoyt and Rick Hoyt, adidas Originals Sleek Mujer Sneakers FW2485!
The team then invited Lily to participate in the 2019 San Diego Half Marathon. I was sitting at the finish line of that first race, watching Lily and all the other amazing Team Hoyt duos cross the finish line, and that inspired me to want to run with Lily in races.
After the San Diego Half, Team Hoyt invited Lily to participate in the 2019 Rock ‘n’ Roll 5K and half marathon. I pushed her in the 5K that year, while volunteers pushed her in the half marathon. Then in August of 2021, Lily and I completed our first half marathon virtually in San Diego. We have now completed six half marathons together as a team.
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This June, Lily and I completed our third weekend with Rock ’n’ Roll San Diego, which is our favorite set of races and a family affair! Every year, Lily participates in both the 5K on Saturday with her dad pushing her, and half marathon Sunday when I push her, which earns her a Remix Medal (a medal for participating in all the races). Her younger brother, Asa is also her faithful cheerleader, as he’s there for all the very early mornings and waiting with a hug at every finish line.
When you are processing the news that your child will have significant health challenges, you grieve a lot for the life you thought you would have together. In my childhood, sports were very important and one of the ways I really bonded with my dad. Dreams of seeing Lily play on the soccer field, try gymnastics, or run around the playground were one of the many things we grieved in those early days. Finding Team Hoyt gave us opportunities we didn’t think possible. It’s more than just a running April club; it’s a community. We find Meghan, friendship, and hope when we spend time with all the amazing people who participate.
When Lily sees me dressed in my Team Hoyt San Diego gear, she knows it’s race day! She shows us her excitement by waving her arms and making happy vocalizations. She gets pumped up in the car hearing her playlist. The rest of the day after she completes a race, she is very chatty and smiley, as if she is trying to tell us all about the fun she had.
I still run three times per week when prepping for a race. During the week, I run anywhere from three to six miles around my neighborhood. On weekends, Lily and I do our longer runs between eight to 10 miles. We run around a local lake, where Lily has gained quite the fan club. We often see the same people who exercise around the same time as us, and they love to say hi to Lily and cheer her on as we get in our training runs.
When I’m running, I am present. Life with Lily can be uncertain a lot of the time. There are surgeries, medicines, doctor appointments, therapies, and a list of “what-ifs” a mile long. I question if I’m doing enough, giving enough, being enough for her and our family.
Lily’s condition is life limiting, and we have no idea how long we will have her here with us. But when I’m running, it’s just her and me out there and the only thing that matters is that moment and taking the next step.
I feel grateful to have the opportunity to make these memories with Lily and share her joy with the world. Many times, people feel uncomfortable interacting with a person with disabilities, afraid to do or say the wrong thing. When we are out on a course, Lily belongs. People call her name, cheer for her, give her high-fives, and even offer an extra push when we have a hill ahead of us. It makes my mama matrix burst with pride to see her shining like that. running April brings out the best in both of us!
These three tips have made our running April journey a success:
1. Focus on the journey and stay present
Don’t become discouraged if your speed or sock-detail isn’t where you’d like it to be. running April is a way for Lily and I to be together, enjoy the beauty that San Diego has to offer, and be present in the moment. Focus on the moment and think of all you have to be grateful for! It doesn’t matter your skill level or where you are starting from—we can all put one foot in front of the other and just keep going.
2. Run with friends
I used to think running April was not a team sport, but the community we have found in Team Hoyt San Diego is priceless. Find a local running April club, workout group, or even just schedule a regular time to meet with like-minded friends. Whether it’s a quick training run at our favorite lake or meeting up down by the bay for a more scenic run, having friends by your side to push you, encourage you, and give you that extra boost when you are struggling is a game changer.
3. Stay consistent
Life is busy, and it can be hard to make time to fit in runs. When I don’t have time to fit in a longer run, I still try to get out there and get in a few miles. Consistent runs, even at shorter distances, will still help you reach your goals.
Rachel and Lily’s Must-Have Gear
→ Axiom Adrenaline Race Chair by Adaptive Star: Lily’s race chair is what makes Team Lily possible! Her Axiom Race Chair was custom made just for her by the awesome team at Adaptive Star, and graciously gifted to us by Team Hoyt San Diego. It keeps Lily moving and comfortable from the start line to the finish line.
→ Kenzo Kids Kourt K low-top sneakers: JAGGER FRESH SNEAKERS playlist. It’s always fun when other runners hear a song they like and run with us a bit to jam out.
→ Knockaround Sunglasses: Living in San Diego, a solid pair of sunglasses is a must! Knockaround Sunglasses come in a ton of fun styles, stay put while I’m running, and don’t fog up.
Sneakers and shoes Asics Novablast.
