In July our daughter became very ill. She ran a fever, had a positive strep test, broke out in a rash, and then complained of pain in her foot. I spent a week running her back and forth to our pediatrician, sitting up with her at night trying to keep her fever under control, prevent the itchy rash from keeping her awake, and just sick with worry. We ended up spending a full week at Children's Memorial hospital in a quarantined room on the infectious disease floor. After several days of testing, the infectious disease team declared her free of any infection; however, the symptoms had not subsided and we discovered that while there was no infection there was totally out of control inflammation. It was then we learned kids get arthritis, too: systemic onset juvenile idiopathic arthritis.
Coping with her disease has been life changing. I had a very hard time managing the loss of the child she was before she got sick. It was maddening to consider that the child I had spent the past five years watching shine might lose some of her sparkle. I was furious and incredibly frightened by the possibility of her losing her capacity to do. Once we returned home from the hospital I watched her so closely, we drew pictures of where her body hurt every morning, we took warm morning baths to loosen her joints, we investigated medications, and we agonized. I cried myself to sleep, forced myself out of bed, and then into early labor with my third baby.
When we were at Children's her rheumatologist kept telling us her condition would be manageable with the right course of treatment. It sounds horrible. While I sat at her bedside and considered just the concept of managing sickness for her life I became acutely aware of one fact: normal had ended.
I can imagine what normal was to me before July 9, 2011 - the day she presented with a fever. But, I can also close my eyes and hear her crying in pain, confused about why she wasn't getting better, questioning if she would have to use crutches, wondering if she would make it to the potty in time, crying because she didn't. My mind begins to swirl. I can think back to mornings when the first thing I thought about wasn't what my daughter's feet would look and feel like when she got out of bed.
I am trying to embrace our new normal. At the hospital she started Naproxen and Prednisone. In August she began treatment on Methotrexate and we immediately saw improvement in her quality of life. Now, November, her days are mostly good. Often at night she is sore from a busy day of running around like normal. She rashes occasionally, but isn't bothered by it much. She only uses Naproxen when she "needs" it; though, I think she is just growing used to life with pain because she often behaves as if she is uncomfortable but just doesn't want to take more medicine. She runs, does yoga, dances, races her brother outside, and talks about something and everything all day long. So to that end she is normal.
The new normal unfortunately includes a sizable portion of panic and anxiety. Six months ago when she would wake in the middle of the night to go the bathroom and cry it didn't send me into a panic attack. Two weeks ago, though, she woke to pee and had pain in her feet. She came into my room crying and frightened. I think I was shaking when I woke up. I worry that one night we'll wake up and she will be regressing into disease instead of improving.
I spoke with another mother of a newly diagnosed JIA patient the other day and it was oddly wonderful. It's awful to be having this conversation about our children being sick and managing a disease. It was good though to understand her perspective, to follow her train of thought, and to have someone really get it. It was unpleasantly comforting. She was still looking for answers and in a mental space of severe sadness mixed with total confusion. I get it. I am in a more accepting mental space of knowing there aren't always answers but there is a manageable course of treatment in a new normal.
Trouble is my mental space can acknowledge that a "manageable course of treatment in a new normal" sucks.