Things Aren’t Always What They Seem

Things aren’t always what they seem.

Browsing the blogsphere, I was skimming over some of my favorite sites when I came across a post by Momma On A Mission. I love checking in with her, because I never know what I’ll find. Initially I found her because she also blogs about Juvenile Arthritis, but the post that caught my eye this time had nothing to do with JA. It was all about their family outing with the big duck.

Reading through the post, and enjoying all her fun pictures made me think. Juvenile Arthritis is EXACTLY like the big duck. Even though her post was about a family outing, it was the perfect metaphor for JA. Things aren’t always what they seem. Let me show you.

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See the cute little ducky in his hand?  That is how most of the world views Juvenile Arthritis. It’s not that big of a problem. Not that many kids are affected. “It’s just some aches and pains.” From this perspective, see how tiny the duck is?

Now consider this:

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It’s the same duck, from a different vantage point. For families dealing with JA, THIS is the true size of the duck. Its huge! It takes up over half the picture! What you see, if you are not a family with JA is very different. You aren’t as close. Things seem smaller. You might not realize how big this thing really is. Both perspectives are real to the viewer, until they are right next to the duck. Then they are able to see the true reality.

When you think JA is “just aches and pains,”  you don’t know that it can be a potentially life threatening illness that can attack joints as well as organs. When you say “it’s not that big of a deal”  is a very big deal to us. In Momma’s family, 33% of her children are affected. In mine, both my children have JA, meaning that 100% of my  kids are affected.  To us, that’s a lot. It is a big deal. It’s all about perspective.

Because juvenile arthritis isn’t a very well-funded, highly researched or widely publicized illness, the general public doesn’t realize how big our “duck” really is.

  • JA affects one out of every 250 children.
  • There are over 300,000 children suffering from JA in the US alone.
  • Juvenile arthritis is more prevalent than juvenile diabetes, cystic fibrosis and muscular dystrophy…. combined.

It causes our children pain (and far more than just aches and pains,) but it also changes their lives in many other ways.

  • Treatments can result in nausea, immunosuppression, delayed or stunted growth and  excess fatigue
  • Frequent visits to the doctor, physical therapist and/or hospital can cause excessive school absences
  • Excessive school absences can result in educational and social delays
  • Educational and social delays can cause psychological stress
  • Psychological stress for the child can cause strain across the entire family unit

And these are just a few of the things we face!

Juvenile arthritis affects us every single day.

It breaks our hearts when another parent at the ballpark makes the comment that our kid ” has had one too many ho-hos” when in reality he has spent the last six months on prednisone.

It makes our blood boil when our trick or treater (who needs to use a wheelchair in order to make it to more than 3 or 4 houses) is told she is “running quite a scam.”

It’s disheartening when friends or family say “Really?  But they don’t look sick.” If they only knew what we went through to get them there, how many medications they are taking, and how it can all change, in just a matter of days, or even in just a few hours.

Even when things are going very well, or if a child is lucky enough to enjoy remission, his parent’s smile hides a worry that today might be the day that it will all come back.  Why? Because there is no cure. They could be back to square one in a blink of an eye.

JA is a master of trickery- it makes things seem very different than they really are. But now, you know. Things aren’t always what they seem.

 

 

 

 

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  1. […] I may look familiar, but you don’t know me.  You don’t know my kid. You may see us, and think you can judge, based on appearances, but things aren’t always what they seem. […]

  2. […] next Halloween will be a happier holiday for kids with special needs. Hopefully reading posts like Things Aren’t Always What They Seem will change a few […]

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