When we attended our first JA conference in 2004, I wasn’t sure what to expect. The conference came highly recommended by our pediatric rheumatologist, and our nurse – who both said that it would be a great experience and that we would learn a lot. Three years after diagnosis we were still coming out of the denial stage, having tried and failed many medications already and we were starting to understand that this WAS our new reality and that arthritis was with us for the long haul. I guess we expected a mini vacation where we would meet some new people and gather some new knowledge. It was so much more.
To say that the conference was life changing sounds cliché’…. But it is not an understatement. It’s true. The people we met, the activities we attended, and the information we learned represented major turning points in our perception of this disease, our ability to cope with it, and how we approached the future.
It’s probably not very surprising to many parents that even after three years we hadn’t met many other children with arthritis. I hadn’t reached out to any other parents, or sought any online chat support, or even reached out to the Foundation. We had simply been plowing forward, head down, determined that we would be one of the families to find early control and remission. Did I mention it took me awhile to break free of the denial stage? I guess, in my heart… I worried that talking to other parents would make it real… make it permanent… would somehow validate it in some irreversible way. So, I didn’t think it was a hindrance to be living in our solo bubble, pretending we were alone. But I was wrong.
Turning point number one came when Caitlin attended her kids activity sessions. We had watched our daughter, who was once very outgoing and fearless, become quiet and withdrawn, a little shy and slow to warm up . But frankly, that didn’t seem like such a detriment compared to the intensity of the arthritis she faced, in every joint of her body. I wasn’t surprised though, when we dropped Caitlin off for the first morning and she clung to my leg crying “Please don’t leave me…”. The activity leaders gently coaxed her away from me with puppets and dolls and fun activities. At lunch that day, she was glad to see us… but not overly so. And we had no tears or even a backward glance when she signed in for the afternoon session, much to our surprise.
That night, when we talked about the day, our little girl gently lobbed this epiphany our way. “I was scared at the beginning, because kids are always so much bigger and faster than me. But these kids were just like me! I didn’t feel left out or alone. I didn’t have to keep my arthritis a secret!” So, there it was. Not some big intellectual discussion about the disease and how it affects us… just the simple truth of a six year old. She was small – actually the smallest kid in kindergarten because of the arthritis, because of the prednisone. And she had never mentioned how much it bothered her, until she was able to be safe in a place where she was the same as everyone else.
That turning point reminded me that this is not just a physical battle. It’s also emotional, and psychological and spiritual. Being with other kids with arthritis helped Caitlin feel safe, strong, and empowered by the laughter and fun times they all had together. Those kids didn’t spend the whole time talking about hot swollen knees…. But they did see each other take medicines, get shots, sit on chairs instead of the floor, take rests because they were tired. They did each get a “boo boo” bear to take home, with a small doctor kit so they could demonstrate how to give the bear a blood test. And in those quiet moments between swimming, crafts and all the other fun things they did, Caitlin learned that she was not alone.
Turning point number two – It turned out that I am not alone either. Just as Caitlin meeting other kids with arthritis opened her world, meeting other parents who shared my worries and struggles validated my pain, and opened me to the idea that I have a support group – a web of information from people who are living my reality… people who have ideas about dealing with schools, participating in sports, or getting a child to swallow crushed medications in pudding. I met people there that have become like family to me. When I sat next to Val at a round table session on systemic JRA, and she told me all about her son Robbie… well, its hard to describe the relief I felt that day! I was nodding so hard my head practically flew off and it was bit like I had been wandering around in a group of aliens for years and had finally found one of my own kind. Like looking in a mirror…. Except she not only showed me what I already knew about myself, but parts of myself that I hadn’t even been paying attention to (or willing to address…) I realized that I am not weak, but I am not steel either…. And there are a whole troupe of parents who know what my shoes feel like who are willing to send a hug, or a card, or a kind word when it can make all of the difference.
When we head to the conference this summer in Washington DC, it will be with the same excitement and anticipation that we would approach a family reunion. Caitlin will get to be with kids who hate shots, know about ice packs and rice wraps and paraffin dips. I’ll get to see people that I feel like I know, but have never met in person. I know their kids, know the meds, know that they were able to play football the last two years……They know about disappointment, hope and fear… They know about great expectations and new realities and turning points. I can’t wait to see them!