After my first son was diagnosed with
Juvenile Enthesitis Arthritis (JEA) our world was turned upside down for a while. And even though it was only a few months before we were able to get a diagnoses and start treatment, it seemed like a lifetime. It was the end of his 5th grade school year and we were bracing for what middle school would hold for our son who was just diagnosed with a disease that left him physically disabled. How could our baby have Juvenile Arthritis ?
Looking back, we held on to him pretty tightly for the next few years. He was on and off of different Juvenile Arthritis treatments. He would have flare-ups and then calms. And he was in and out of his wheel chair or using a cane for at least a year.
Sixth grade was difficult. He had gained a lot of weight. We didn’t want him doing anything that might irritate his joints. He got bullied, of course, because he was the kid in the wheelchair one week and might be able to walk the next. Kids would say things like “you are faking” or “you’re not really hurt.”
He had a PE teacher humiliate him because he couldn’t run track with the boys. She made him separate from the boys and go into the gym with the girls and walk around the gym. Now, to an adult this may not sound so bad, but to a sixth grade boy it was pretty tough. Especially to a kid who had been taught to respect his teachers and to expect that they would advocate and try to help him.
His counselor that year encouraged him to make a presentation about Juvenile Arthritis to his PE class as a Health project. And he did. He researched the disease and presented
it to the entire sixth grade during PE class. He had a power point presentation, a computer, projector and a big screen. He talked through the points. I was so impressed with his understanding of this disease. But I was SO proud of his courage.
There were many good things that came out of this presentation, but probably the best was that so many of the kids in his class figured out that it was real. This disease he has has a name. They all learned that year that just because you can’t see something is different about a person, does not mean that there is not something different about that person.
The remainder of that year and into seventh grade things gradually got better. His courage increased. He started swimming. It was so good for his body. It was the exercise his body needed to spur on growth. He didn’t lose any weight, but he grew about eight inches from the beginning of sixth grade to the end of seventh grade.
At the end of his sixth grade year we learned about Camp JAM (Juvenile Arthritis and Me) at the annual Dallas Arthritis Walk. We had missed the registration period for the summer of 2012, but made sure it was on our radar for the next summer. When the time rolled around, he was ready to go,
and we were ready to let him go.
At that time it was at a little camp in Davis, Oklahoma. There were more kids than I expected, and they were at all different points in their disease. They spent time doing things that all “normal” kids love to do at camp. They also spent time talking about Juvenile Arthritis. It was a HUGE for him to be around other kids coping with Juvenile Arthritis and living happy lives.
The experience was so good for him emotionally. Obviously, I worried about him ALL.WEEK.LONG! But, if I had to send him off to camp for the first time, I was so happy it was with a group of people who knew all the ends and out of Juvenile Arthritis.
When we picked him up at the end of the week, of course the first thing I asked was, “how was it?” He said, and I will never forget it, “Mom, this was the best week of my life.” He continued to tell me that he wanted to go back every summer until he was too old, and then he wanted to be a camp counselor and volunteer.
We will be sending him to his forth camp this summer. Since last summer, my middle son has been diagnosed with Juvenile Idiopathic Arthritis (JIA) and he will be going this summer too. I can’t wait to hear about his experience and how he gets a better understanding of the disease and the experience he gets to share with his brother, and the new friends he will make.
If you have a child who has any form of Juvenile Arthritis, I highly recommend that you look into sending them to camp. We have two offered in our area; one through the Dallas division of the Arthritis Association and one through Texas Scottish Rite Hospital for Children. Both are amazing opportunities for your child.