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.

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Great Courage Can Come in the Smallest Packages – a tribute to Princess Laura

ImageOn January 30th 2013, Laura will be celebrating her 4th birthday! In honor of her birthday, I would like to share her story with you.

Laura was born a happy, healthy baby. A beautiful little package sent from Heaven welcomed into a family with a devoted Mother, a Daddy who is her hero, and a Big Sister who loves her to pieces. Laura never got sick, ever. In fact, the first time she ever needed medical attention was when she was 3 years old. She had fallen and needed X-rays. No one could have prepared themselves for the sequence of events that would follow those X-rays.

Laura has Leukemia. Those three words shattered their hearts and changed their lives forever. Big Sister Victoria cried “why is my sister sick?” Victoria was 8 years old and understood cancer. Laura’s parents were in shock. The next few days were spent expecting the Doctor to call saying it was all a big mistake, the test results were wrong and their little baby girl was fine.

That call never came.

Laura’s Mom continued to pray asking “why? Why my baby? Why would God allow this to happen?”

Do you know that even in the midst of complete heartache, she never loses faith? Do you know why? She told me because she looks into little Laura’s eyes and she knows she’s in God’s hands. She trusts in God’s plan and thanks Him everyday choosing her to be little Laura’s caregiver … Take a moment to really take that in….God bless her.

Laura’s chemotherapy treatments are trying, they take a lot out of her, but even at 3 years old, she toughs it out and remains strong. Laura met her best friend Riley in the hospital, at the time Riley was being treated for kidney cancer. Sadly, Riley passed away only days before celebrating her 4th birthday. Although the time they spend together was brief, they forged a bond that Laura won’t likely forget.

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Two months ago, Laura lost her hair. Her Daddy proudly supported his little girl by honoring the day with a ‘shave day’. He shaved his head to match hers. Embrace his awesomeness!

Being 5 years older than Laura, Big Sister Victoria is a huge help in Laura’s care taking. She asked to have her head shaved too, but it’s hard for little girls to grow their hair back, so she still has hers. Embrace her awesomeness!

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This year Laura will be celebrating her birthday with all her favorite princesses at Disney. Please join me in wishing her a very happy birthday and “liking” her page Team Laura. (Maybe send a shout out to Victoria, Mommy, and Daddy too 🙂  )

Laura continues to stay strong, facing challenges head on and tackling every obstacles that stand in her way. We can all learn from Princess Laura’s bravery and strength.

We embrace your awesomeness Princess Laura!

What will you take from her story?

Please help me share Laura’s story with the rest of the world. Her story deserves to be heard and her family could use all the love and support they can get.

All Love,

Sandy

If you enjoyed this blog, you may also like Unleasing The Hero Within.

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