August 29, 2005

We are back both from camp and from Sadie’s joint injections.

First, the injections… hard to say yet if they are successful the first day it is hard for her to put any pressure on her ankle, but within a week we should see improvement and we can now start weaning her from the oral steroid which defiantly has helped her feel good over the last ten days. The injections went well and while waiting, I did a lot of reflection about the weekend we had that the KAT-FISH camp (Kids and Teens KAT). As Sadie gets older it seems she tolerates being put under better, I remember holding her at two and three years old and her crying and trashing trying to get away from me after waking up. Now, she calmly wakes and is alert and ready to go home with-in minutes. An amazing difference from years ago. I also realized today that each time for me gets easier (sad, but true). I find the butterflies in my stomach are not as strong, still present as there is always worry for your child, but they are familiar. I see the faces of other parents in the waiting room and I can clue in to those who are “first-timers” and those who have seen those rooms before.

Camp was a wonderful experience; I can’t even begin to explain. I am without words about some of what we learned there. It was a sense of belonging to hear other parents tell their stories, struggles, successes and let downs. It was a HUGE sense of belonging for Sadie and unprompted she let us know individually and together that it felt so good to her to feel “normal” around this group of people. I personally learned a lot of staggering statistic’s that I didn’t know about JRA. For example 1 in 1,000 kids are diagnosed with JRA; this is verses the 1 in 30,000 with Juvenile Diabetes. The biggest difference is most people have heard of kids with diabetes and few have heard of children with JRA. There were several families there all with stories unique, but all with a similar theme. I have realized how lucky we are to not be dealing with systemic JRA which not only affects the joints, but also the major internal organs.

One thing that I feel much relief about personally was talking to a few parents who with me agreed that they were open to several areas of treatment which include both Western and Eastern treatments. What we as parents have found is little to no middle ground and that they can’t take the chance of removing themselves from the Western medical treatments. I have felt defensive in the past about this subject and do feel a little relief knowing that other parents have been down this road and understand the reality of the situation. All and all I feel that it was a wonderful experience for all of us. I learned a lot, Bill really felt it opened his eyes to more of what is going on as it has been primarily my roll to do the doctors visits. Syrah had a great time and did better in that new environment than any of us expected and Sadie had a blast and hopes to see some of her new found friends again soon. One thing I have to share that Sadie has found her condition to be embarrassing for a long time; she doesn’t want people to know. Bill and I have talked about this and we aren’t’ exactly sure where this stems from but are going to work hard to make sure this isn’t something she feels in the future. JRA is something that is in our lives… now and realistically in the future. There is no reason to avoid it, not talk about it, not live it and more than all not try our best to understand it. Certainly this does not mean this will become what runs our lives, in no way are we allowing that to happen, but we as a family need to accept this for what it is.

Both Bill and I learned a lot about advocacy and hope that we will be more involved in the Arthritis Foundation in the future. We will be walking on behalf of the foundation and raising money! We hope that when the time comes you will be willing to support our family in this fight too. Awareness is key… we need people to better understand that this is a real issue that affects not only the old, but the young and that without research and funds to help researchers… it will continue. I hope for the future that my girls will not have to worry about this being something that becomes a part of our on going family history.

For six years Sadie has dealt with this condition, for six years I have dealt with this condition. I haven’t been forth coming with to many details, but that ends now… I ask all of you as family and friends to helps step up and fight this with our family, for our family and for all the families out there fighting all ready!!!!!