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.
When talking about blessing that have come to us, we can definitely count the Arthritis Society among those blessings. We were fortunate enough to be placed under the kind, compassionate care of a physiotherapist with the Arthritis Society. She answered numerous questions with more patience than a saint - and trust me, if you knew our family, you’d know exactly how direct and unrelenting we can be! She acted as an advocate for Amanda. She was able to get our local pediatrician to understand how uncomfortable Amanda had become while she was in a flare. When we were told Amanda would be sent to Sick Kids for joint injections, Sue provided a great deal of information on the procedure - how it was performed, what we could expect afterwards.
We’ve also received valuable and comprehensive information from the Arthritis Society. When Amanda was first diagnosed, we made the mistake of surfing the web, attempting to find out more information about Amanda’s future. All that did was cause us incredible anxiety! There’s a great deal of information available via the web; however, when a parent is first beginning this journey, the information is overwhelming and, quite frankly, scary! We often found ourselves reading symptoms and conditions not related to the type of arthritis Amanda has. The Arthritis Society was able to filter that information for us - into manageable, understandable, and relevant material.
She often asks us why God gave her arthritis. We tell her it can be for a number of reasons - perhaps she had to face the challenges she’s faced in order to become the person she’s meant to be; perhaps she is destined to be a pediatric rheumatologist so she can help kids who face the same disease she has. But I think the biggest reason Amanda was given this disease was to help spread the word that kids can get arthritis too.
And now a few words from Amanda.....
Hello. My name is Amanda and I have arthritis. Most people don’t believe me when I tell them that. They think that only people like my grandparents can get arthritis. But I know that’s not true. And so do the people at the Arthritis Society. They helped us understand what it means when a kid gets arthritis. They helped us understand that, although things seem pretty crummy, there is always someone who has it worse. They helped us understand that there are a lot of kids like me and that I’m not alone. But most of all, they helped us understand that there is hope - hope that I can be like a normal kid, hope that I can beat this disease, and hope that I can grow up to be the adult that I’m supposed to be.