Reflection – July 24, 2013
As customary in my life I usually have to think about things and let them percolate a little bit before I really can figure out and express how I feel. During the last couple of days I have been able to reflect on and think about this amazing gift our family was given – the gift of attending our first JA Conference. I think we all learned so much and gained so much I just had to write it all down. I really do think it was life changing in terms of its impact on our JA journey as a family. Where to begin? I think I’ll just share the feelings I have had during the last few days…
I’m so grateful for being able to attend the conference! Not only were all the gifts and the perks awesome (the Disney trip made my son super happy!), but I didn’t realize how much I would enjoy meeting and talking with other families. It was so nice to be able to speak the same language even though this is all still new to us. It was nice to talk with people who know what we are going through and be in community with a group of people who don’t pity you when you say your son has arthritis. It was not shameful to ask “Which one of your children has arthritis?” “What is his/her diagnosis?”, or “What medications have you tried?”. I’m also grateful for the knowledge I gained at the conference. I feel more equipped to make a plan to help my son track his pain on a regular basis and I have more questions to ask his doctor at our next visit. Finally I’m grateful for the opportunity Zach had to meet other kids with arthritis. He, like us, is resistant to admit that he might need help sometimes. This was evident when he quickly dismissed the “comfort spoon” giveaway that he received in the conference registration bag. We tried to explain that everyone is on their own journey. After the conference was over, however, we were able to have our first real family conversation Sunday night at 8pm sitting at a diner. Zach expressed his feelings about things that happened at school with friends and teachers because of arthritis and he asked if it was “like a disease or something”. That was hard to hear and have to answer honestly (see denial below). We listened and had a really good talk about some of the things we learned and how we can do things differently in the future as a family. I was thankful because Mike talked too about the things he learned from dads– it finally felt like we had come together and were on the same page with this arthritis business.
It is not just a river in Egypt! I realized just how much I was and probably still am in denial about this whole situation. Even though we have been involved with events sponsored by the Arthritis Foundation since October when Zach was diagnosed, I have been in denial about the truth of the situation. My son has a chronic illness. A chronic disease. I don’t even like to type those words. I don’t think of my son as sick and I hope that never changes. Thankfully his diagnosis is oligoarticular (limited to 4 or less joints) and in his case it is just his right wrist and thumb, we caught it early and the meds are working. However, the truth of the matter is: HE STILL HAS ARTHRITIS and has some of the same feelings and experiences as other kids who have different, more severe diagnoses.
Some of the stories I heard from the families were heart-breaking. From hearing families that have to drive 6 hours one way to see a pediatric rheumatologist monthly to hearing about kids who still are struggling with finding the right medications, to hearing families whose children just woke up one day not being able to walk, I was humbled about our own experience so far. Even though I’m grateful for where we are now, I’m fearful for the future. It is like I’m waiting for the other shoe to fall. What if the arthritis develops in another joint? What if Zach is experiencing side effects from the methotrexate that we haven’t identified yet like the “mental fog” that we heard about from multiple families? What are the long term effects of the medication? The “what ifs” can drive me crazy. I try not to live in “what if” land, but I have to say it was nice to be able to talk about these fears with those who share them and understand. Now it is time to stay in the present and meet challenges as they come.
I came away from the conference filled with hope and inspired to take action! I met one family with a daughter diagnosed with Zach’s type of arthritis at age 2. Now at age 9, she is in remission and off medication! That is wonderful news! Hearing from the youth speaker panel made me very hopeful too. These young adults diagnosed as kids and now in their 30’s and 40 candidly shared their trials and joys through their arthritis journey. The medications that are being used now are SO much more effective than 20 or even 10 years ago. Fewer surgeries for kids and fewer kids in chairs. Also, good news! I was truly inspired by the gentleman with RA who climbed Mt. Everest. It was so motivating to hear about someone who did not let his real or perceived limitations stop him from accomplishing his dream. What a role model for all of us!
Hearing all the kids’ stories, and learning about the lack of pediatric rheumatologists in this country (some states have zero!), inspired me to take action! In the coming weeks I want to find out how I can be an advocate for JA and how I can make a difference to raise money for more research, to support more pediatric rheumatologists and to ultimately find a cure! Won’t you join me cause kids get arthritis too!!!