I am the mother to a beautiful little girl, who is the shining star of my life.
My daughter is named Janae' Michaela. She is six years old; she just turned six in May of this year.
My daughter also has a disease that affects her life in ways I wouldn't wish on anyone. She should be enjoying life, running around, laughing, singing, just being a kid, not worrying about wheether she is going to hurt, end up in the hospital for more tests, or taking yucky-tasting medications!
When she was three years old, Janae' started suffering what I assumed were "growing pains": pains in her joints. She had this every morning; the days where the weather was bad were the worst. It was on these days where she'd lie in bed and cry.
It got to be so bad I had no choice but to get her to the doctor's, to see if she could do anything. The doctor examined Janae' from head-to-toe (and back again), didn't seem to find anything wrong; but she couldn't understand why she was having such pain or difficulty in walking. That's when the doctor ordered more tests; she also suggested that we see a specialist because something was going on.
No kidding. She didn't have to tell me that.
Whereupon, we went to see the specialist. He did more blood tests on her, also examined her joints. The results were not what I expected. My child, my beautiful Janae', had systemic-onset juvenile rheumatoid arthritis. Besides the joints, the disease affected her organs; this explained the rash she had on her face and body most days (in the evenings, especially, or on bad-weather days), irritability, hot, tender, swollen joints in her knees, elbows, and knuckles, and why some mornings she was so sick with a high fever, nausea, and severe joint pain.
The news was devastating.
I pictured my little girl, sitting in a wheelchair, bent over like a palsied old woman with baseballs for joints: swollen. Red. Angry. Filled with pus. Throbbing with pain. The image broke my heart.
Janae' could get treated for her condition; however, she would have to be on medications to try to ease the pain/inflammation; she would also have to have physical/occupational therapy, to try to ease her range-of-motion and help with her walking, which got worse (she would have to walk with crutches, or for longer distances, to use a wheelchair, to help take the strain off her swollen, painful joints), and have to have monthly bloodwork, to check on her liver and body systems when she was "flaring" (the period in which her disease was "active").
Janae' took the news pretty well, all things considering (excepting on those days where she was sick or on her therapy days, where therapists would work with her, stretching her joints, and cause more pain/discomfort; it was hard hearing Janae' crying/screaming out in pain); I was very proud of her. She didn't like the therapy sessions (what child would??), and she hated taking the medications; many of them tasted nasty or left a bitter aftertaste on her tongue, but Janae' knew she had to if she wanted to feel better.
It has been like this now for the past several years. Janae' is still walking (with crutches, mind you, but she is still walking!), or, if we go to the mall, she uses her bright-green wheelchair, which she thinks as her "car". Janae' also takes her medications every morning and night and now calls the therapists her "friends", as she knows the therapy helps her to move or walk easier. She also puts up with the doctor's visits or all the pokings/proddings.
Janae' is a little trouper. She handles her condition a lot better than I, her very own mother, ever could. I am extremely grateful that she has such a positive, bright attitude about her situation; I know I couldn't handle what she has to go through, just in order to be free of pain or to be able to get around easier.
Janae' is the current poster child for the metro Rochester (N.Y.) Juvenile Rheumatoid Arthritis (JRA) Association. She appears at different functions or on the special telethon the city has every year. She has done a very good job in informing others of her condition and letting people know that "not just old people get arthritis; anybody, from babies on up, can get it".
Even with all her medical concerns, Janae' is a typical little six-year-old girl, more than you may realize. She loves to swim, dream, sing, play with her dolls or her brothers, and anything to do with princesses (or the colors pink and purple). She is very smart; Janae' is going to be in the second grade come next month, in the Gifted/Talented program at her school.
We know that in the future, Janae' might need surgery to replace old, worn out joints; we try not to think of that. We focus on the here-and-now; we focus on her life as she experiences it; we try not to think of what's ahead. Janae' already has enough worries with her health; why scare her even more??
Well, I am going to go. Janae' is in bed, sleeping; I am going to get her up and take her out to eat, for breakfast. She's been a very good little girl this week; this is my reward for her, to show her how happy I am for her. I will write in here again, soon, with more of her story; I believe it isn't over, not by a long shot. Until then, this is her mother, Evalene Chittendon, signing off! Take care and God bless!
~Love, your new friend, Evalene, mom to Janae', my little star! :)
