Are you listening????

      You know what I have realized lately, how much people misunderstand the kids with diseases. They think we are incapable of being normal when the truth is that we are normal! We are just like you. We are normal people with extenuating circumstances. We have feelings. A kid with JM is not always going to be a ray of sun shine. Hell, ANY kid isnt always going to be ray of sun shine. Us "sick kids" are still people. We laugh and cry and get upset when things don't go our way. We try to be like the other kids even when our bodies try and hold us back. We take 18 hours of college when we haven't been a full time student in over a year and a half......well maybe that one is just me, but you get the point. But just for a moment if you would try and put your self in our shoes maybe then you could understand.
      Pills, pills, and more pills everyday till some doctor in a white jacket comes in and tells us we are better when we know there is a lot more to our diseases then what a doctor can see from blood work. Thats just the way the world looks at us though. We "look fine" but that is not always the case. These diseases attack us from the inside before you will ever see what it does to us on the outside. Then what makes it even harder is to try and talk to people about what goes on in our lives.
      From the mood swings to all the food we want to eat just because of one little pill that we take. Its crazy. Then what drives you even more insane is feeling good one day and then the next day you don't even want to get out of bed. It makes you think doesn't it. How would you feel.
      So lets try a little experiment. Close you eyes and imagine that you can see into the world of both the child that is sick and the parent that is taking care of the child. What do you see? Do you see the struggle and the hardship that the parent goes through having to take care of a sick child? Or do you see the child trying their hardest to remain as normal as possible in this "sick person" status that everyone is trying to put them in. You see that is what no one really thinks about. We, as children with a disease, are trying to be heard. We are shouting from the inside of this sound proof dome that this world has put us under. We are screaming to not be heard. DO YOU HEAR US!! WE ARE STILL US. We never changed. This disease isnt us as much as some people think it is. It is a part of us, always and for ever but it will never take over our identy. People can cast a judgment and think what ever they want, I can't stop them. What I can tell you though is that sometimes we all need to take a step back and realize that our jobs as humans with morals is to love and comfort one another and see a person for who they truly are.
      A disease is a disease. A person is a person. We will live and we will fight but this is where I take my stand. We will be heard. We will have fun. We will be the individuals that we want to be through all the pain and suffering that our bodies put on us. No one can take away your identity. BE the person you want to be. Nothing and I mean nothing can stop you from being yourself, sick or not.

So be you and love yourself.

Love always,

Callie

To learn more about JM please visit www.curejm.org