Facing Forward is a series that shares the lives of people living with arthritis and other invisible illnesses. The goal of the series is to see how we are similar and how we are different – and to remind us to keep moving forward because we aren’t alone!
This special edition of Facing Forward shares the stories of the individuals involved in the Arthritis Foundation’s 15th Annual California Coast Classic – a 525 mile bike ride from San Francisco to Los Angeles.
Name: Theresa (Team Sluggy)
Hometown: Boulder Creek, CA
Volunteering in Honor Of: Mia (daughter)
Honoree’s Diagnosis: enthesitis-related juvenile arthritis
Honoree’s Age at Diagnosis: 6
Why is it important to you to participate in the California Coast Classic?
The past three years I have ridden the California Coast Classic in honor of my daughter and all the other children affected by arthritis. In 2012 I did the two-day option with my sister, Cathy. The following year my husband and I did the full eight days, while she volunteered along the route. Marv (Mia’s dad) and I also rode last year with a new team member, Dan. Unfortunately Marv and I aren’t able to ride this year due to his new job and lack of childcare.
Mia has enthesitis-related juvenile arthritis. She was diagnosed when she was six – she is now twelve. Although I couldn’t ride this year, I still wanted to support the CCC as a volunteer. The Arthritis Foundation has done so much for our family: education, family days, camps, and conferences. Knowing Mia wouldn’t go to camp without knowing anyone, I contacted the SF office and asked to be set up with another child that was also going. Mia and Kayleigh met a couple of weeks before camp when they were 8 and walked onto the bus holding hands – that image still brings tears to my eyes. They continue to have a close relationship. Kayleigh is the honoree in Monterey. The Arthritis Foundation has also given Mia opportunities to learn about advocating for herself and others in Sacramento and Washington D.C.
What are the biggest challenges you have faced since Mia’s diagnosis?
The biggest challenges for me has been controlling my anxieties about Mia’s health and future. Another challenge is people who just don’t “get it.” Jut last week a “friend” questened the fairness of my “sick kids” (my son has food allergies and eosinophilic esophagitis) being allowed to attend school while her healthy son “can’t.” She is upset about mandated vaccines in the schools and somehow relates it to my children.
What are some of your favorite tips and tricks for helping someone with arthritis manage everyday tasks?
I remind Mia that I don’t know what it feels like to be her and that she needs to listen to her body. We never say “no” to any activity she wants to try.
As a caregiver, how do you manage to keep facing forward every day?
Mia helps me keep facing forward by being very active and always being open to new experiences. She just made the basketball team – her first team sport ever! Looking forward, Marv and I talked about how fun it would be to ride in the CCC as a family someday. I’m not sure we can pull it off, but it’s certainly fun to think about!
If you could go back to diagnosis day and tell your past self one thing, what would it be?
If I could go back to the day of diagnosis I would tell myself that Mia will adjust well and continue having a fun and fulfilling life.