Sadie was born October 1997 as a healthy, beautiful baby girl. At the age of 1 Sadie was walking, talking, running, laughing and playing. Within a few months after her first birthday she started to show signs of slowing down. She didn’t run as much and she wanted to be held more. At first I thought little of it, but in time it was more obvious something was wrong. She started opting to crawl rather than walk, she had a hard time in the mornings and fussed a lot to be carried. One day while playing with her on the floor I realized her right ankle seemed a little swollen and had a tinge of discoloration. I took her in to her doctor right away and left with the diagnosis that maybe it was sprained or twisted, but nothing major. Over the next three months, the ankle got worse and it was very clear that something was seriously wrong. She went to an orthopedic specialist at Children’s and again, left with no answers. After several doctor visits and many frustrating months, a first year doctor saw Sadie at a clinic referred by family and she said “I think your daughter might have arthritis”. We were at Children’s Rheumatology the next week where finally we had answers. It was sad to be given a diagnosis, yet, it was relief to finally know what was going on and start the process to try and help her.
Sadie had undergone many different types of medications, joint injections, therapies (both traditional and untraditional) and surgery(s). She doesn’t remember much of life without Juvenile Rheumatoid Arthritis (JRA), she doesn’t remember life without pain. However, she does show an incredible amount of maturity and courage in the face of JRA. She has learned to live her life around JRA and not letting it live her life for her. Her frustration is never with the IV therapy or the doctors and nurses, but more with the fact that she might miss another art project or science class. Sadie doesn’t want to be different due to arthritis, she wants to run with her friends, build forts, hunt for bugs, walk the zoo, play at the park and sometimes she has to face the reality that it might mean she is more sore later in the day or needs to lay low and rest a bit longer.
As her parents, we always have said “we will never her tell her she can’t do something because of arthritis”, although times have come where we have had to re-evaluate this in order to keep her joints safe or to give her more time to mature to the point she can really see the physical consequences for her actions; for the most part, we have held true to this. We continue to be on our knees in prayer – thankful for the gift this beautiful girl is to our lives, the inspiration she provides, but prayerful that a miraculous healing will occur and in the mean time that His glory will in some way shine through her.
