Finding the Gifts in Juvenile Arthritis

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Juvenile Arthritis is a pain in the ass joints. My son CJ was diagnosed with Juvenile Rheumatoid Arthritis when he was 9 years old. The diagnosis took my husband and I by surprise though it shouldn’t have…Arthritis is a prominent disease in both our families. The thing is, when we think of Arthritis we tend to think of it as exclusive to adults. People don’t talk much about Arthritis affecting our children. CJ complained a lot about pain. Mostly when he was asked to do something like take out the garbage (!!) We thought he suffered from a case of laziness. But it was natural for him  to complain only when he was asked to do something…when his joints caused him discomfort, he would sit down with his legs up and watch TV or play video games to give his legs a rest. Otherwise he was out climbing trees, riding his bike, jumping on the trampoline, or getting his chores done. The Doctors believe the pain had probably been there since birth, so the pain he felt was “normal” for him.  He never questioned it. He knew that when he was sore, he was tired and it helped to rest and so that’s exactly what he did, naturally. We only ever really needed to ask him to do something when he was ‘having a lazy day’ on the couch.

CJ had been training in Taekwondo since he was 7 years old – 2 years before his diagnosis. He loved it. He was determined that one day he would earn his Black Belt. Although the Arthritis did rear it’s ugly head a few times during practices and he missed his first tournament due to a flare up, he didn’t allow it to slow him down. He learned the true meaning of perseverance, and indomitable spirit.

CJ had always been thoughtful and compassionate of people and animals. Suffering the pain of Arthritis as the flare ups worsened actually made him even more so. He was driven and moved to “help people who couldn’t move their arms or their legs”. When we came across the Walk To Fight Arthritis, he was so determined to help that he took off down the road knocking on doors trying to raise funds. He ended up doing much more than that!

As people opened their doors to him, he shared with them his story which prompted many to share theirs as well. I will never forget the excitement in his voice as he threw open the door saying “Mom! I met more people who have Arthritis! I didn’t meet anyone my age with it, but lots of old people! And I raised a lot of money! Someone even gave me $20!” He raised $1800 that year and he only had 9 days to do it. People were so generous and CJ found a sense of connection with others in sharing his story.

Every year CJ sets a goal to beat last years donations. Last year he achieved that goal. CJ also sets a goal to keep moving toward his Black Belt.

In December 2013, CJ tested for his Black Belt. Part of the testing was to write an essay of his choosing. CJ’s wrote about Taekwondo and Arthritis. He wrote about the obstacles and the challenges he faced on his journey to becoming a Black Belt. He also wrote about the gifts that he has found in Arthritis – He knows who his true friends are. He has become more compassionate and caring toward others. He feels a sense of accomplishment contributing in the community. He has learned that by being himself and sharing his story, he has achieved what many adults do not; authenticity. He has learned to live by the tenets of Taekwondo in every day life; Courtesy, Integrity, Perseverance, Self-Control, and Indomitable Spirit.

On September 15th 2013, CJ was presented with The Ontario Youth Award for his efforts with The Arthritis Society. This is the first time this prestigious award has been presented to someone in the Ottawa area. On December 7th 2013, CJ earned his Black Belt and although it is considered a great honor to be tested by a Master in Taekwondo, the Master singled CJ out telling him the honor was HIS to have been a part of CJ’s journey in Taekwondo because he emanates the essence of Taekwondo in the Dojan as well as out in the community.

When life presents you with a challenge, learn from it, find the gift in it, and kick it’s  joint ass 🙂

If you are interested in helping CJ reach this years goal please visit his donation page here

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My Child is My Hero – His Journey With An Invisible Disease

cjI can’t tell you how much it hurts my heart when people judge what they clearly know nothing about. As many of you know, my son CJ was diagnosed with Juvenile Rheumatoid Arthritis two years ago when he was only 9 years old. The journey with this disease hasn’t been easy, especially for CJ.

CJ is an active kid. He loves to run around, ride his bike, and push his limits every chance he gets. The kid’s a spitfire. He just doesn’t stop. When he first started complaining about pain, we didn’t take him seriously. “I can’t take out the garbage, my feet are too sore”, “I don’t want to go to school, my legs are sore”. When it came to “I don’t think I can go to Taekwondo tonight, my wrists are really sore” we started to wonder what was going on. I’m ashamed to admit “Oh CJ, you’re fine once you get there, suck it up and let’s get going” came out of my mouth more than once. He never complained when I said it, he showed up every time. I often wonder if there are other children and parents who go through the same thing without a single thought that something more serious than ‘laziness’ might be going on.

CJ’s likely had Arthritis his whole life, he’s just learned to live with the pain as ‘normal’. When he shows up and gives his 100% at school, in sports, and on outings, he does so in spite of the pain. As he says “my body might be hurting but I’d rather that than miss out on the fun”. Each day is different. Sometimes the pain is barely there, sometimes his joints just don’t work so well, and sometimes the pain is severe. When he has a flare up (as long as it’s not too severe), it will usually only last a few hours if he stays off his feet, doesn’t use his wrist or whatever joint is causing pain that day. Using his crutches helps with a speedier recovery. He won’t use his crutches anymore though. He suffers through the pain, even if it’s worsened and prolonged because he doesn’t get treated the same when he uses them. People aren’t so nice when he’s got his crutches. They aren’t so nice when he complains of pain. Arthritis is invisible and is therefore often misunderstood. The judgements just don’t come from the kids in school, a great many come from the adults in his life as well. “Big faker” gets tossed around a lot. “Milking it” does too. “He’s smiling, he’s fine” they say. “He only uses his crutches for a bit then leaves them behind to run with his friends and grab them again” Yes, that is exactly what he does. He uses the crutches to alleviate the pain and allow his joints to heal. When he sees his friends playing it hurts more to miss out on the fun. He plays through the pain knowing full well he will pay for it later. They call it faking. I call it perseverance and determination.

Imagine being 10 years old unable to get out of bed in the morning to go to the washroom, having to rely on your mom to carry you around. Imagine being the Mom who sees her sons tears knowing that this day, he will be too tired and too sore to move at all. Knowing that no matter she does this day, there is nothing she can do to relieve his pain. The Arthritis is not limited to CJ’s ankles, and wrists. He has Arthritis in his spine, his hips, even his jaw. Will it continue to get worse? What does his future hold? Will it ever be cured? Will he grow out of it? There just isn’t enough research available to answer the questions that rest in our minds all the time.

The Arthritis Society has given CJ the opportunity to be part of an elite group when he feels left out from the rest of the world. Since CJ’s diagnosis, he has raised over $5000 for the organization that gave him back his confidence and self-worth. This year, our family will be hosting a fundraiser to help raise funds for this exceptional organization and in an effort to get kids taking about this disease, we will be contacting schools in the area to see if they would be interested in putting a basket together to raffle off on our big day.

If you’d like to help CJ reach his goal this year, please share his story with others and visit his donation page.

Pamela Tourigny

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