Can you imagine living the majority of your life trapped in your own disabled body only to be freed because of a misdiagnosis? That was me. That was my life.
Quite often I’m asked questions like, “Aren’t you angry that you missed out on so much in life?” or “How do you stay so positive?” and “would you have needed all those surgeries if you had received a diagnosis of Dopa Responsive Dystonia (DRD) as a young child?” These are all great questions, but I can’t believe that no reporter, individual listening to me speak or friends have ever asked, “How did this affect your brothers?” Honestly, I don’t know for certain how they felt about all of this, but I do know that it affected them immensely growing up.
My limited mobility had a huge influence on what we did together as a family. When we visited National Parks, we never went on a hike, much less a long walk to get the perfect family photo. When we visited water parks, my teenage brothers would go off on their own so my parents could take me for a quick round of mini golf, ice cream and a few souvenir shops. And when we had no choice but to get to a destination by feet, my brothers would take turns giving me a piggy back ride. This was just a part of our normal lives. At the time, I never gave it a thought. But as an adult looking back, I realize all the sacrifices they made simply because their little sister had a knee-knock walk which made it impossible to participate in any activity that most kids loved and looked forward to.
Truth be told, they got the short end of the stick the day I was born. Yes, I may be the one who had to physically deal with spastic arms and legs day in and day out, but so did they! Why is it that no one ever thinks about that? Or is it just me? Why didn’t I ever think about how it affected my brothers? I guess I was just doing the best I could to get through life.
So to my brothers, I have to say Thank You! I thank you for your unconditional love. I thank you for never showing me how frustrated you must have been for all the times I held our family back. But most of all, I thank you for treating me like a normal sister! I am blessed to have you both in my life!
After living the first 33 years of my life thinking I had Spastic Diplegia, a form of Cerebal Palsey, I was correctly diagnosed with Dopa Responsive Dystonia (DRD). I am on new medication and doing things that I never imagined possible. This has changed the lives of my husband and two daughters. I truly believe that I am living a miracle each and every day. Life can't get any better than this!