The day before Thanksgiving 2007, I dropped Miss E off with her babysitter for two hours while I went to a meeting. When I walked in the door to pick her up I knew something was wrong. The sitter said “I don’t think she’s feeling well, mama.” Truer words were never spoken.
It turns out that no matter how sick your baby is, it’s nearly impossible to get an accurate diagnosis of an uncommon disease around the holidays.
It took two months of ruling out meningitis, various viruses, broken bones, neurological conditions and leukemia before we finally received a diagnosis: Polyarticular Juvenile Rheumatoid Arthritis. And just to keep it interesting, we’ll throw in Systemic Features including rash and frequent fevers. Polyarticular means more than 4 joints, and Miss E has 22 joints that have been involved so far…sometimes all at once.
Over nearly seven years of active treatment, our little Wonder Woman has undergone multiple surgeries, CT scans, x-rays, joint injections, failed treatments, severe allergic reactions, MRSA, corneal ulcers...the list goes on and on. She turned eight on her last birthday.
I think everyone can agree that having a chronic illness is hard on a child. What may be less frequently considered is how it affects the rest of the family. There is financial hardship, work considerations for parents and an impact on siblings, just to name a few. This blog is my story to share with other parents walking the same road, parallel roads, and those simply observing.