Volunteering in this capacity was an eye-opening and humbling experience for me. I was overcome with thankfulness that the first time I had seen the inside of a special education classroom was not as a child, but as a college student. I was mainstreamed in general education courses throughout my K-12 schooling experience, pulled out only to work with the adaptive physical education teacher to stretch my leg muscles a few times per week. On its own, CP does not affect intelligence. However, it is often co-morbid with other disabilities such as mental retardation, seizures, and speech impairments, none of which, I have ever experienced. I would often reflect on how much I have been spared while I drove back to campus. As the semester came to a close, I realized I needed more hours of service to complete my assignment, so a friend suggested that I volunteer for United Cerebral Palsy's (UCP) Halloween Party. Every year, UCP hosts a party for kids with all sorts of disabilities. Dressed as the Flash, I staffed the bean bag toss for the majority of the evening. Like volunteering in the classroom, I also found this experience to be incredibly humbling. I saw a wide range of kids with disabilities, many who dealt with greater challenges than I do every day of their lives. I was also struck with the fact that unlike a special education teacher who can leave the experience of disability when the school day is done, family members deal with this experience continually.
|Posing as The Flash|
This led me to reflect on my own family's experience, especially around Halloween. Let me start by saying this: I am a die-hard trick-or-treater. In 1986, before I had surgery, I could hardly stand on my own and struggled to walk. My brother had to support me in this endeavor, but we still went out trick-or-treating. The Halloween Blizzard of 1991 did not stop me from going door to door! Little comes between this girl and her chocolate! There is however, one Halloween that will forever be ingrained in my mind—Halloween 1988. That year I had told my mother that I wanted to be Minnie mouse. She painted my nose black and found me a red top to wear along with mouse ears. However, that year I did not have to worry about trying to squeeze a jacket underneath my costume because I had under armor of a different nature...a plaster body cast.
|Halloween 1986--I am enthralled with our friend Lisa. My brother Jeremiah is the skeleton holding me up.|
Earlier in the month, I had undergone an intensive orthopedic operation in order to correct my gait. My leg bones were broken and my tendons were severed. I was placed in a body cast for six weeks to heal. This experience impacted our family. For a time, I had to stay in the hospital, usually one parent stayed with me, while my brother was at home with the other parent. When I finally was able to come home, part of our house had to be rearranged so that I could sleep in the living room. Carrying me upstairs to my bedroom was out of the question! Getting me into and out the car required multiple people, I had to be flipped every couple of hours to prevent bed sores.....
|Ready to go out trick-or-treating as Minnie Mouse|
|Playing with Minnie after making my rounds!|
At times, I suspect my elder brother of three years, Jeremiah, felt lost in the mix. However, it was on Halloween that I remember him showing love and care for me in a tangible way. While my mother or father wheeled me down the street through our neighborhood, it was my brother who took my candy bucket up steep driveways to the door for me, rang the bell, and explained to the greeter why I couldn't come to the threshold. Without complaint, he collected candy for both of us that year, which we later went home, sorted in piles, and enjoyed!
Why am I reminiscent of this memory? My brother Jeremiah is now a father to two precious little girls, Lily who will be turning two in December and Tizi (pronounced TC) who will be turing 4 early next month, just about the age I was when I had my operation. His family has recently moved into a house in our childhood neighborhood and he will likely be taking the girls around the block to the very same houses we visited as kids. When I think about this, I am again humbled and grateful. I am grateful that while the girls will also be able to experience the care of my brother, they will not have to have him collect their candy because they are able to walk to the door themselves. Their childhoods will most likely not involve children's hospitals, invasive surgeries or long recoveries. They might have to learn how to wear a coat under their costume (a trick for all MN kids!), but probably not a body cast. Tizi spends Tuesday afternoons not at physical therapy, but at dance class.
The walk of life living with a disability is sometimes a courageous one—filled with challenge, struggle, and insight. I've certainly learned things along the way that have been profound. I applaud those with disabilities who rise each morning, facing all of life's challenges with joy and perseverance. I will admit that having CP has formed my character and in many ways has positively affected my outlook on life. However, if am completely honest, there are some childhood joys that I wish I could have experienced: learning how to skip, wearing flip-flops, and riding a bike without training wheels to name a few. Tizi and Lily will be able to enjoy all of these things and so much more—for this I am grateful, it is the sweetest treat of all.
See Halloween photos here: http://www.facebook.com/media/set/?set=a.917462471251.2345705.56005890&type=1&l=84e4c65e37