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.
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