Juvenile Rheumatoid Arthritis – The Story of Amanda

Three words – that’s all it took. Three words that took my breath away, feeling like I’d been hit in the stomach. “She has arthritis.” Those three words would change our lives forever.

Our 18-month old daughter, Amanda, was diagnosed with pauci-articular juvenile rheumatoid arthritis in February 1997 -a form of arthritis which affects fewer than 5 large joints (hips, knees, ankles, shoulders, elbows, wrists, jaw).

In the grand scheme of things, it could be worse. She didn’t have cancer, muscular dystrophy, or any other potentially life-threatening disease. She had no visible signs that there was anything wrong with her other than a lump on her knee.

When you envision your child’s life and future, any progressive disease is devastating. But when I think of everything this disease has brought for her, I can truly say she’s been blessed.

Amanda has been blessed with strength – both in body and spirit. When her joints are swollen, warm, and stiff, she’s still able to climb up on my bed in the morning and give me what we call “Amanderific” hugs – hugs that threaten to choke the breath out of your lungs. When I am feeling overwhelmed and discouraged about her condition, she is always able to comfort me with a snuggle and a ready smile.

Amanda has been blessed with patience. One of the side effects of her type of arthritis is “eye arthritis” or uveitis. At her worst, she was getting up to 25 eye drops a day. Hourly, she would remind us when her watch chimed the hour that it was time for a drop.

She would tilt her head back, receive the drop, pinch her nose to keep the drop in her eye, and still be able to color in her coloring book or play with her dolls.

Amanda has been blessed with a sense of humor. When she was hospitalized for a week with chicken pox (a potentially dangerous situation since Amanda is on methotrexate, an immune suppressant medication), she smiled and said “You gotta do what you gotta do!”

Amanda has been blessed with compassion. I’ve been fortunate enough to find a bulletin board on the web that has posts from dozens of moms of children with juvenile arthritis from all over the world.

When I tell Amanda about some of the challenges these children are facing, she is sure to include them in her nightly prayers, asking God to make them better and help them not to be afraid of whatever needles or medicines they are forced to take.

But most of all, Amanda has been blessed with life. She truly takes each day and makes the most of it. Her energy and light shine as an example to everyone she meets who feel that they may have had some rotten breaks in life. Her laugh gives me hope that all I have envisioned for her for her life ahead is still a possibility. Her voice as she sings tells me that things aren’t as bad as they could be. Her intelligence reminds me that, while this disease may have ravaged her body, it has not affected her ability to learn and absorb.

Yes, I can truly say Amanda has been blessed. But I wish it wasn’t because of arthritis.

Thanks to Michelle Banic for permission to reprint this story.

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