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!
Child's Name: Waylon, 10 years old
Location: Perryville, MO (rheumatologist and hospitalizations were at Cardinal Glennon Children's Hospital in St. Louis)
Child's Diagnosis: SJIA or Systemic Onset Juvenile Idiopathic Arthritis
Age at Diagnosis: 2 years old
How are you currently
treating your child's condition?
Currently, he is only on one medication: Actemra. Actemra is an infusion that he receives every eight weeks.
What are the biggest
challenges you have faced since your child's diagnosis?
Treating him the same as our other son. His doctor told us early on not to give him special treatment because of his arthritis. We also struggled with his question, "Why do I have to be the only one (in this family/in my class) who has to do this?" Waylon would ask us this through tears when he was having to take methotrexate. We did our best to explain that is just the way God made him, but how do you explain/justify this to a child when you can't understand it yourself? You just have to accept how things are when you have done everything you possibly can to fix it.
What are your
favorite tips and tricks for helping your child manage everyday tasks?
We pray a lot! From the time Waylon was first diagnosed, he would pry every night that God would take his arthritis away! We are really blessed that Waylon doesn't have difficulty managing everyday tasks. He has been active in sports over the years, participating in tae kwon do, soccer, and most recently basketball and track. You would never guess he has arthritis.
As a caregiver, how do you manage to
keep facing forward every day?
We know that he is not hurting. His lab numbers are good. We can see that his Actemra is working.
If you could go back
to diagnosis day and tell your past self one thing, what would it be?
That is a tough one! I asked for some help on this. Waylong said, "It will all get a lot better." My husband (Brad) and I agreed on, "Trust God to take care of this." It took me over a year to realize that I couldn't make this better myself and to turn it all over to God to handle.
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This experience has really demonstrated the benefits of advocacy to me.
Not only did I help pass a law that will help all patients in the state
of Colorado, I also helped myself keep moving forward with a feeling of