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Parents of Kids With Disabilities, It's Time For the Competition to End

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“If you think your child has a lot going on medically, why don’t you spend a day with my child?”

This is a phrase I have heard more than once; not only directed at me, but directed at other parents. As parents of children with disabilities, we find ourselves in a small “club.” All too often, we feel isolated and alone because it is hard to maintain friendships when your child’s medical needs dominate your entire life. It is hard to plan a lunch date when you are constantly running to doctor appointments and different therapies. Then there is also the reality that some friends will leave because they cannot bear to watch what your child goes through. If you are like me, you have used the internet to find other parents of kids with disabilities to connect with, hoping to form friendships and exchange ideas. Most of the time, it is incredibly rewarding, and I have made friends from all over the country going through almost the same medical battles we are. But, I must also say, sometimes it can be very disappointing.

I am not sure why sometimes it feels as if it becomes a competition between us. We are all fighting battles with our children. We are all trying to find the best and least invasive treatments for our children. I know we all fight our insurance companies just to get treatments our children need covered. So, why do we waste what little energy we have left to compete against one another rather than support one another? Do we really need to argue over who’s child is more ill? I don’t want to be a part of that argument.

I wish my child wasn’t living with a rare condition and I wish yours wasn’t either. In my opinion, I think we get so caught up in our own feelings that we forget about the value of other people’s feelings. One person’s point of view may be very different from yours. Even though you may not agree with how one person manages their child’s condition, we must remember their opinions and feelings are just as important as our own. I do believe it is healthy to discuss and even debate treatment plans, because that is how we learn from one another. It is how I learned about a very important medication for my child which has changed his life. But to imply that my feelings or anxiety about my child’s condition is unwarranted because you think your child is “more sick,” is just not productive for anyone. We expect people to not bully our children, so why is it OK to bully each other? We need to set better examples for our children and the world.

It is time to start holding each other up with support rather than scrutinizing each other’s feelings and decisions. I have always tried to make sure that other parents know I hear them, whether it is on social media or in the hospital. Am I perfect? No. Have I made someone else feel the way I did when someone tried to minimize my son’s medical condition and my feelings about all of his treatments? Possibly. But with awareness comes change, and I am hoping to bring some change in our conversations.

Hopefully, now that this tough subject is front and center, we can be aware of one another’s feelings and stop the competition. My feelings matter. Your feelings matter. Together we are better than this.

Getty image by Krimzoya

Originally published: May 14, 2018
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