“I don’t want to be this sick kid; I want to be a NORMAL kid.”
How many times have you heard your child say this sentence or you know has thought about it? You see other kids out playing sports and going to school every day. You wish that you child could do that, too, instead of sitting home and resting or taking so many medicines a day. Other kids wish they could miss as much school as your child does. They may even think he or she is lucky that they get to stay home so much. Yet, all you really want is for your child to 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. It’s difficult going to the doctors so much and needing to be in the hospital because of mito.
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 such as mitochondrial disease, that is not well understood and is as hard to say, 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 and discuss with your child:
This is one of the hardest tasks to learn how to do. Since your child’s body doesn’t make enough energy to keep moving all day, saving energy before fun activities so that he or she can still participate with friends is important. This may mean taking a nap in the afternoon, resting the day before, or taking breaks throughout the day. Every week, make a list with your child of a few activities that are really important. Then, figure out ways to help save some energy before each of those things. This way your child’s body will have enough fuel to do some of the things he or she loves to do. This will require planning ahead of time but will allow him or her to participate in fun activities.
Depending on how old your child is, you may go about this differently. If other kids at school understand your child needs more rest, they may be more willing to do things at his or her pace instead of theirs. For example, it’s a really hot day and going outside for recess is not an option. Maybe a few friends would want to stay in to play inside so they can be with your child. 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 child approaches middle school and high school, this becomes harder to do. But it’s still important to tell a few close friends about mito so that they can understand what your child is going through. You just may be surprised how supportive friends will be!
What you will realize as soon as you arrive at camp is that every single kid at camp understands your child’s journey with an illness. Every single kid at the camp will take a lot of medicines every day or have to see the doctor a lot. Everyone is dealing with similar challenges and it’s a wonderful opportunity to make new friends who understand your child. MitoAction has a partnership with Serious Fun Camps across the United States and this is a great opportunity to attend a camp with other children with mito. You can learn more through our Matthew Harty Camper Fund.