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Don't you understand?

I don't want to be this sick kid; I want to be the NORMAL kid.


How many times have you said this sentence or thought about it in your mind? You see other kids out playing sports and going to school every day. You wish that you could do that, too, instead of sitting home and resting or taking so many medicines a day. Some of the other kids wish they could miss as much school as you do. They may even think you're lucky that you get to stay home so much. Yet, all you really want to do is be healthy enough to go to school, play with the other kids, or go out to the movies every once in a while with friends. You're tired of going to the doctors so much and needing to be in the hospital because you don't feel good.

ACTIVITIES, such as scouting, art classes, chess clubs, etc., are an important part of a kid's life. Most of these don't require a lot of energy and are fun.

LOCAL SUPPORT GROUPS are very helpful. If one is not available, start one. You may be surprised at how many kids in your school have a chronic illness and would really like to be part of a support group. It's worth asking your school nurse or guidance office if an activity such as this would earn you curriculum credits in the study.

When you have a disease that is not well understood and is as hard to say as mitochondrial disease, it is hard for other kids to truly understand what you are going through. They may think that you look too healthy to be missing so much school or they may misjudge how smart you are just because you are in a wheelchair. Anyone who is coping with a chronic illness is going to wish every once in a while that they didn't have the struggles that go along with it. If you didn't want to be "normal," that would be abnormal! What can you do to help feel like a typical kid? What qualities do you have that you can use to still have fun and be around other kids your age?

Here are some things to think about:

Learn to pace yourself.
This is one of the hardest tasks to learn how to do. Since your body doesn't make enough energy to keep moving all day, save some of your energy before fun activities so that you can still participate with your friends. This may mean taking a nap in the afternoon, resting the day before, or taking breaks throughout the day. Every week, you and your parents should make a list of a few activities that are really important to you. Then, figure out ways to help save some energy before each of those things. This way your body will have enough fuel for you to do some of the things you love to do. This will require planning ahead of time but will enable you to have fun.

Talk to the kids in your school about your illness.
Depending on how old you are, you may go about this differently. If other kids at school know that you need more rest, they may be more willing to do things at your pace instead of theirs. For example, it's a really hot day and you can't go outside for recess. Maybe a few of your friends would want to stay in to play with you inside so they can be with you. For younger kids, some families have created kids' storybooks just for their child to show to their classmates so they understand Mito. Some other kids have asked their nurse or social worker to talk to their class about Mito. As you approach middle school and high school, this becomes harder to do. But it's still important to tell a few close friends about it so that they can understand what you are going through. When I told my friends about my illness in high school, they were very supportive. I still talk to these same friends now, ten years later!

Think about going to camp for kids with illnesses or disabilities.
The first time that I ever went to one of these camps, I was 17. What I realized as soon as I got to camp was that it was normal to have an illness. There wasn't one single kid at the camp who didn't have to take a lot of medicines every day or have to see the doctor a lot. I made really good friends there. They understood what I felt like. THEY had to do these things too! What I realized was that the word "normal" depends on where I am and who I am with. This was a place where I felt like everyone understood.

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