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Why I Thank My Son’s Disorder for This Gift It Gave Him


To say my oldest son is adventurous would be an understatement. We joke he’s going to grow up to be a stuntman. The kid is afraid of nothing. He has done some bold stuff for a 4-year-old, from swimming with sting rays in the open ocean to boogie boarding to zip-lining. He loves rock-wall climbing and roller coasters. There is nothing he won’t do.

More than anything else, however, he loves to climb. When all the other moms are looking down at child-proof door knobs, outlets and kitchen cabinets, I was looking up. I became the master of climb prevention and could give a seminar on all the ways a child can use everyday household items to reach the ceiling.

One day at the park, I was yelling at him to get out of a tree, and it finally hit me why he is so fearless when he climbs. “Down now,” I said sternly, “This is not safe, and you’re going to get hurt.” My little boy stopped his ascent and sat down on a branch. He looked at me and said in a clear tone that sounded just like his dad, “But I hurt anyway so why can’t I have fun?”

My heart broke. I pulled him out of the tree and hugged him. I explained to him there are different kinds of hurt. Not all of them go away. Some can last a long time or be permanent. Falling out of a tree could cause an “ouchie” we can’t make better. “OK, sorry,” he said. I looked at his sweet little face, all dirty and disheveled. I couldn’t help but smile at him as I picked pine needles out of his hair. “Come on,” I said, “let’s go play on the jungle gym. That will be a safe place for you to climb.” But, my suggestion didn’t satisfy him. “Boooooooring,” he replied in a sing-song voice. “Sorry, kiddo. It’s the best I can do,” I said.

It’s funny how good can emerge from bad. If you stop and take the time to look for it, silver linings can appear in the most unfortunate of circumstances. It took four years for me to see the silver lining of dystonia. But it’s there. It’s not a dull and tarnished silver, either, but rather, it’s bright and shiny and hard to miss. In fact, it’s so wonderful I never knew it was even related to dystonia until my son pointed it out.

You see, to call him fearless is inaccurate. Instead, I should say fear doesn’t deter him. As we all know, fear can be paralyzing. Even as an adult. It can stop us from making good decisions or tying new things. Dystonia has given him so much to fear at such a young age that he has been forced to learn how to overcome it.

In retrospect, he faced many fears when he was younger. I remember as a little 1-year-old, he was even afraid to eat. Food caused him pain. His solution was not to eat. When his feet hurt, he was afraid to walk. When he couldn’t hold a pencil, he was afraid to go to school. So many little things to be afraid of. But he had no choice. He had to eat, learn to walk and go to school. However, he has learned to quickly conquer his fear to do the task at hand. He doesn’t quit because he gets scared. As a sheer matter of survival, he had to learn to overcome his fears.

This is dystonia’s gift. I love his “what’s the worst that can happen” attitude. It makes him bold and adventurous. He already knows the worst that can happen. He knows what it’s like to fall down, to be hurt, to be singled out. He has faced all of these issues head on, day after day, his entire life. For him, failure is an invitation to be creative and find a new way. He’s an outside-the-box thinker. He has to be. While others fear the unknown, he’s busy enjoying it. He chooses to be happy and to experience all that life has to offer regardless of what challenge is in front of him. This is a life skill that even most adults have not mastered. It’s a really hard thing to do, but my little 4-year-old does it with grace and humor. And, as much as I hate it, I have dystonia to thank for it.

September is Dystonia Awareness Month. To learn more about this neurological movement disorder, contact the Dystonia Medical Research FoundationTo sign the White House petition to have September formally recognized as Dystonia Awareness month, click here

Follow this journey on Raising Dystonia.

Lead photo source: Thinkstock Images