"Typical" is not a word I would use to describe Rory. Not because she has disabilities, but because of who she is, in spite of her disabilities. Rory started off, just as any of our other kids did. Holding her head up, reaching for and trying to hold her bottles, even acting like she wanted to try and sit up. But, at about four months of age, all of the trying, and the progress stopped. My wife began to worry, and I just tried to offer explanations like "not all babies hit milestones at the same time", just trying to ease both our minds, really. But inside, I was just as concerned. Soon thereafter, we were told what we feared was the truth; Rory was going to be permanently disabled. At first we were just given the Cerebral Palsy diagnosis and soon after that, Lissencephaly, also known as “smooth brain”. The doctors’ explained that Lissencephaly is a Neuronal Migration Disorder that takes place between 12 and 14 weeks gestation. They went on to describe the brain as having “creases and folds” and said that because of the disorder Rory’s creases and folds weren’t deep enough, or high enough; leaving the brain to have a smooth feature. Devastated as we were for our beautiful girl, we pressed on. And so began the new way of life. Having therapy multiple times a week, countless doctors’ visits, and the mountain of questions we had about our Rory's condition. I have to say, as mothers go, Rory landed herself a good one. My wife hit the ground running. She became a machine. She wasn't afraid to ask questions, she kept a schedule like no one I've ever met (and still does to this day). She became Rory’s voice. We all quickly learned how to live the special needs lifestyle, and speak Rory's language. We started out with First Steps, where Rory began to receive physical, occupational, and speech therapies. Of course, Rory struggled physically, but she immediately began to show off her intelligence. Although she was unable to talk, Rory found her own ways to let everyone know what she was thinking, and what kind of mood she was in. Rory continued therapy, day after day, and she did so with a smile on her face. Every struggle she has faced, she has done so with more grace than most adults I know. There were days when Rory was just simply too tired, but even the simplest tasks take a toll on her that we can’t really comprehend. Rory continued to grow, and showed more and more that she knew what was being asked of her. Even though her physical limitations made things much more difficult for her and sometimes even stopped her in her tracks, it never stopped Rory from trying. It’s tough to sit and watch this beautiful little girl struggle to do something as simple as take a step, sit up on her own, or just hold something in her hand when you know it’s her own body that she’s fighting against. Even eating was a challenge for our girl. She was, and still is able to eat by mouth, but she had to work so hard to do so, that her little body couldn’t retain the calories she needed to gain weight. Because of this she had to get a G-Tube (feeding tube). Along this crazy road she has guided us down we have had the pleasure of meeting some wonderful people, some of which have been on their own special needs journey. Kendal and Friends is and organization that serves as a shining example of showing families in the special needs community that they aren’t alone. They are doing great things within their own community, and trying to expand their reach to surrounding areas in an effort to help change the lives of as many special needs families as possible. One example of their community work is the new wheelchair accessible playground located at Anderson Dean Park, in Harrodsburg, KY. Today, Rory is continuing her therapies and working towards getting a power wheelchair; and thanks to Kendal and Friends, she has one of her very own that she can work with and perfect, and one day be independently mobile. So that’s our Rory. The sassy, daring, five year old little girl, who would just as soon do something thrilling and dangerous, than anything at all. She carry’s with her an attitude that could rival most kids her age, and the smile to match it. She has shown our family what unconditional love really looks like and taught us more about ourselves, and what one little five year old can accomplish, than we could ever hope to teach her. She is, in a word, remarkable. I know, she has made me a better father, and person; and she continues to have her one of a kind impact one everyone she meets.
The Kendyl and Friends Family would like to thank Rory's parents for sharing their story, and Rory's story, with us.