Selfish or just trying to be normal?

Marty told me today he no longer wants to be involved with arthritis advocacy. He said he wants to be able to forget about it. I guess he means besides the shots, pills, doctor appointments, infusions and blood draws. I mean, he can’t totally forget about it, but he wants to ignore it as much as possible.

I can’t say I blame him, being a teenage boy and doing well with his treatment and all. He is starting to try out his wings, and doesn’t like being weighed down with all this medical stuff that most kids don’t have to think about.

It ruffled my feathers a bit when he made a comment about people wasting their time looking for a cure. I tried not to show it, but I reminded him that the research being done to look for a cure is also what helps them develop new medicines that make him as healthy as he is. He clarified that he didn’t necessarily mean the scientists, he meant all the other things that go along with it, like fundraising, lobbying, awareness efforts, and patient programs.

He didn’t seem to be in the mood for discussion, and I didn’t feel like arguing, so I dropped it. Had I chosen to continue the conversation I would have reminded him you can’t fund research without all those other things. Without fundraising and lobbying, there is no money for research. Without awareness, you don’t open people’s eyes and hearts (and wallets) to donate. Without patient programs, people get tired of constantly feeding the effort without getting something out of it.

I know he doesn’t mean to be selfish about it, after so many people have helped our family, but I can’t blame him for not wanting to be involved. This illness stole over 3 years of our lives, and shattered hopes and dreams we all had four years ago. He is just now finally feeling normal again, but isn’t truly allowed to forget that deep down he is still different.

For now I’ll allow him the luxury of not thinking about it any more than necessary, and I’ll try not to mention it too much around him. Sometimes that’s hard to do, like today when I had to fill out the medical release for his baseball registration. The time will come that he will be forced to take control of his own health, but that time isn’t now. As he adjusts to high school I’ll let him be a little selfish. After what he’s been through since December 2008, I’ll give him that much.

About juvenilearthritis

A single mom raising a son with juvenile arthritis and a daughter with a big heart.
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3 Responses to Selfish or just trying to be normal?

  1. Danielle says:

    I enjoy reading your blog and don’t feel so alone. I sometimes feel like I am reading MY LIFE in your words and struggles. My son, Zach, is now 8 years old and has been through a struggle since he was 5. We are still in major diagnosis process but have some answers, but it is frustrating and doesn’t change his daily struggles and people’s ignorance who have no clue what our lives are like. I have to run to a land PT appointment for Zach but will link you to my blog (which so needs to be updated) so you can check out Zach’s journey. Thank you for sharing your story.

    • I’m glad to help. I know how alone we felt at first, and how much it helped to know there were others that knew what I was going through.

      • Danielle says:

        I couldn’t agree more. It is such a long road to diagnosis and then it doesn’t end there… the meds still don’t guarantee flares and people just don’t understand sometimes. It can feel very isolating. We began with a diagnosis of Morphea that has spread like crazy and I think our doctor count has now reached over 70 appointments in 3 years with over 15 different types of specialists. My most difficult task has been school and actually having him there enough to be able to succeed. It is such a struggle and some days I feel like I am going to break… I also have a 16 year old son and twin 5 year old daughters so it is difficult to balance being mom, nurse and everything else to everyone. Sometimes I just want to hang my cape up and call it quits but I can’t… ever. It is those times that I have to take that deep breath and be stronger and push harder to advocate for this little boy who is unable to completely do that yet and didn’t ask for this.

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