Taking The Bull By The Horns

“Taking the bull by the horns.” It a common idiom, and doesn’t really need too much explanation. It means facing a problem head on and tackling it, plain and simple.

 

I like this depiction because it shows a kid taking the bull by the horns. Juvenile Arthritis is family of pediatric rheumatic diseases. That means that JA is a childhood disease.Although I would argue that it is a family diagnosis (because it affects the whole family) it is actually the child that lives with the actual condition. I talk a lot about how parents can help manage their child’s illness, but the kids can play a role as well.

As a society, we tend to brush off kids’ contributions, after all, they are JUST kids, right? what can they do?

A lot. That’s what.

Even if they are too young to take an active part in managing their own care, there are other ways kids can meet the challenges of their disease, and “take the bull by the horns.” They can make an impact by the way others see them and they can make their own contribution to the cause. Specifically, they can raise awareness, and assist with fundraising for a cure. They can do a lot, but the “doing” can do a lot for them. Giving them some outlet to help,  empowers them. It gives them some control, and a tangible value to their contribution. It can shift the focus from “being done to,”  to “doing,” and that is some very powerful stuff. It can foster a change in mentality, from “I’m stuck with this disease,” to ” I am doing something about it,”  even for all but the very youngest children.

 

A great example of  this can be found in the Juvenile Myositis community.A grassroots group, spearheaded by CureJM comprised of parents, grandparents their kids who have a rare pediatric rheumatic condition (covered under the JA umbrella.) is a perfect example. JM is so rare, that it is considered an orphan disease.That means its not getting a lot of attention, since it doesn’t affect “enough” children.  It is potentially fatal.

cure_jm_foundation

But these parents aren’t taking it lying down. No way. Neither are their kids.

One teen developed a video game to help find a cure. Proceeds from the sale go to research.

Another, under the stage name “Penny Lane” wrote and performed “Soldier On” (available on iTunes) to raise funds for Cure JM.

The very first CureJM fundraiser was a lemonade stand, manned by…. you guessed it….KIDS.

And they are at it again. On November 18th, the kids of the JM community are participating in a huge Crowdrise event. Individually, they are doing whatever they can to raise funds for CureJM through the event. Some are making quilts, others are painting pictures, some are making paracord bracelets (visit Facebook and search for “Paintings for a cure” and “paracord for a cure” to see their work.) The variety is huge!  Collectively,their pages through Crowdrise are all linked to the CureJM team. If their “team” earns the most, then they are eligible for a $100,000 prize. That’s a lot of  potential research.

And before you think that is too lofty of a goal for such a small group, let me remind you that Cure JM, through the same type of grassroots efforts, won a  $250,000 grant during the Pepsi Challenge of 2010. Cure JM secured first place out of 1200 organizations, by tirelessly soliciting for votes.  The kids were a huge part of that, and are a big part of this current fundraiser as well. Each of them are making their own contribution toward wiping out this disease. Individually it may be small, but collectively, they have power. They aren’t sitting back and taking what life has handed them. They are doing something about it. They may be kids, but they still have a chance to make a real difference, and they are.

They aren’t waiting for someone else to do it for them. They are taking the bull by the horns, but they can’t do it alone. Please consider visiting these sites and contributing, or better yet, make your own Crowdrise page to help them!

My own kids are making a difference by supporting all the CureJM fundraisers (they even stood outside the grocery store during the Pepsi Challenge, asking people for votes as they left!) They participate in the Jingle Bell Run. They are Arthritis Ambassadors. They play a part in increasing awareness and making positive changes for the eradication all diseases under the JA umbrella, and like the JM families, we have gotten creative with ways that we can make an impact in their specific manifestation.

JA has taken a lot from my kids, but we can use JA as a platform to help them take some of that power back. Adults aren’t the only ones who can face a problem head on, and tackle it for themselves. They can too. So can you.

 

What things have you done to empower your children with JA (or other chronic illness)?  I’d love to hear about it!

 

 

 

Grant’s take on diagnosis and meeting other JA kids

When I found out I had juvenile arthritis, I had a lot of mixed emotions. I was relieved to find out that I wasn’t crazy – there were real reasons for the way I was feeling, and we finally knew the cause. But, I was also sad to know I had an incurable disease. I was scared and angry. I wondered how I would play sports, go to school and do all the other little things in everyday life. I knew some people who had arthritis (like my dad and grandparents with osteoarthritis), so I also knew how much it could hurt. I was afraid that having arthritis would prevent me from realizing my dreams of playing in the NFL like my dad. Then, when I was told that the type of arthritis I had was totally different from osteoarthritis, I was even more confused. I didn’t know what to think, and the not knowing made me worry even more. Talking with friends didn’t help much, they just didn’t get it. Talking to my mom helped some, but she doesn’t have it, so it wasn’t the same. When I got involved in a study where I got to talk to other kids with the same diagnosis over the phone, that made a big difference. Being diagnosed with JA is scary and frustrating. Not knowing what’s ahead is the worst. My advice is to ask your parents how you can meet other kids with the same diagnosis so you don’t feel as alone, afraid or helpless. It really helped me get through the early days, and some of my worst times.

Evan’s Side

When I was diagnosed with JIA it had been bothering me for a while, but no one believed me. My brother had been really sick, going in and out of the hospital with a bad flare so when I said something, everyone thought it was just for attention. I never had any signs of JA […]

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