Things kids shouldn’t have to worry about

We saw the rheumatologist today and decided that Marty will start Remicade next week. Personally I wonder if they are being a little too cautious not letting him start on Friday, but I guess the doctor knows better than I what the risks are of making the switch too quickly. He had his last dose of Enbrel on Saturday, and they want him off at least a week before he starts the Remicade.

Ever since the appointment, Marty’s mind (or some would say the devil) has been messing with him. He is scared it won’t work and he will have to have an even longer wash out after a few doses of Remicade. I think he is afraid he will end up having to either go to school in a wheelchair or miss several days. I know he is worried that he will never get better, he will always be inflamed, and he will never reach 5 feet tall. How many almost 14 year old boys are 4’8″? I’d guess not too many.

In a way I’m sad that he appears to have given up his dream of being a professional baseball player. Part of me says that realistically the chances of that happening are slim to none, so it’s better he make other plans. But part of me doesn’t want to see that dream die. Before he got sick he was a good athlete and an excellent baseball player. Since then not so much. And that really stinks.

As a mom I really wish my teenage son could focus on normal teenage stuff. Things like getting excited about driving, being interested in girls, and yes, even getting that teenage attitude. I would take all the attitude in the world if it meant my son and I weren’t bonding over discussions of disabilities, school accommodations, trips to the infusion center, and deciding which cafeteria food at the hospital is our favorite. I honestly wish I had no reason to know about sed rates, inflammation levels, bone age xrays, needle gauges, live and dead vaccines, imunosuppressant therapy, or learning words like tenosynovitis.

I would give anything if my son didn’t have to wonder whether his chest pain was caused by sore muscles or a pericardial effusion. If he didn’t have to learn how to adjust a wheelchair. If he had no idea how it felt to be the kid that runs funny or gets sick a lot. If our out of state vacations didn’t center around a juvenile arthritis event. If he hadn’t learned to speak publicly about his pain to raise funds for research. If he never looked at his joints wondering if they were swollen. If he didn’t understand saving his energy for the important stuff in life. If he didn’t have to choose between being in pain or drawing attention to his disability.

No kid should have to think about these things.


About juvenilearthritis

A single mom raising a son with juvenile arthritis and a daughter with a big heart.
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2 Responses to Things kids shouldn’t have to worry about

  1. Danielle says:

    I just came across your blog and I can totally relate to your words and your wishes and frustrations. My son is 7 and was finally diagnosed after 2 years of dealing with joint pains, fatigue, inflammation, stomach pains, chest pains and trying to manage morphea (a localized form of Scleroderma). My heart goes out to any child dealing with the pain and everything you described! I often wish I could back to 2 years ago and not have him suffer like this and have nurses and doctors ask me if i am in the medical profession because of the amount of medical jargon I unfortunately know…zach too has had to get up and speak to groups for medical reasons, can no longer enjoy play dates, has trouble determining whether or not to address his pain or face drawing attention to himself in front of classmates. God bless you and your son on his and your journey…don’t give up hope! Don’t let him give up that dream…sometimes that is all they have to get them through the pain and frustration!

    • I’m sorry for the delayed response. Yes, I have had medical professionals assume I am a nurse because I know more than the average bear. We have been a JA family for 3 1/2 years now and have assumed a new kind of normal. It’s not a perfect life, but it’s our life.

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