Aaron and his wheels

"Even the smallest person can change the course of the future" - Lady Galadriel, Lord of the Rings

No one knows the whole potential of a single human life, the paths a person will travel or what they will accomplish, but in the Lord of the Rings trilogy, Lady Galadriel saw great potential in a hobbit named Frodo Baggins; potential in someone the world thought little of, though Frodo was surrounded by great heroes like Aragorn and Gandalf.

When I entered the world in June of 1982, the situation was similar: in a time of real heroes like President Regan combating the Evil Empire of Communism and fictional heroes such as G.I. Joe, He-Man, and Jedi Knights I was born at thirty (30) weeks development, ten (10) weeks ahead of my Mom's due date. Shortly after I was born, my parents and grandmother (who is a registered nurse) were told that I would not survive. If I did survive: I would never walk on my own (because I was diagnosed with Cerebral Palsy), I would be severely mentally deficient, (due to part of my brain being rendered inoperable as a result of fluid/blood on the brain and the extra pressure that manifested due to being in the confining space of the cranial cavity), I would always be a burden to those caring for me and never self sufficient, and I would never accomplish anything in life. In sum, my quality of life was expected to be non-existent by societal standards. Against this backdrop, the medical minds on hand informed my family that they were content to let me die if that was my family's wish.

Thankfully, my family did not follow the "wisdom" of those "in the know"; like Galadriel with Frodo, they saw the potential that my small and seemingly insignificant life held – fully cognizant that the Creator and Master of the Universe had a plan.

I spent most of my early years in and out of the hospital, sometimes three to six months at a time. As Mom and Dad alternated between work and watching over me, a legion of family and friends filled in while they were away and among them was my nurse grandmother, Pat, a vital part of my very first memory: my grandma, a teddy bear, and I in an oxygen tent. From what has been shared with me, those first few years were a scary and difficult time as I fought to survive, to lay hold of my inalienable right to Life, from which Liberty and the Pursuit of Happiness stem, having come close to losing it on more than one occasion. I have a number of scars from medical procedures in those early years that I don't remember happening because I was so young. As I grew and my world expanded, the medical procedures continued and the resultant plaster and fiberglass castings to stretch various muscles to combat the Cerebral Palsy are forever part of vivid childhood memories.

Despite having an inoperable part of my brain and the resultant Cerebral Palsy, my school years were predominately conventional (although learning to walk unaided in elementary school was quite the accomplishment). I spent these years integrated into regular classes with little need for Special Education (although my years in public school often included physical therapy sessions). Switching to a private Christian school during Junior High and part of High School was an interesting experiment in being "normal" - in that the administration did not interfere with me in any way - but sometimes certain students made it painfully clear that I wasn't like them. My singular social haven outside my family was church, surrounded by family and friends who saw me for what I was, not what I wasn't. A number of individuals who I grew to know in that setting are still close friends today.

During my Seventh (7th) Grade year, two friends approached me while in a presidential history class and suggested I eventually move to Washington, DC and work for Congress on Capitol Hill. This suggestion helped foster the revelation that I needed to find a way to give back to our nation as I could have been born someplace else in a decade where America was the safest and securest place as opposed to a great portion of the word that was under the iron grip of Communism (not a political system that respects life, much less the life of someone with a disability). Armed with this new thought and the realization that I could never join the military, I took their suggestion to heart and no one knew how important those words from friends would be later on.

In Eighth (8th) Grade, my life was turned upside down. Years earlier, Shriner's Hospital began to work with me as they do many children with various medical conditions and challenges. When I was fourteen (14) the doctors there that worked with me advised that I be put under the knife for a routine procedure wherein muscles would be lengthened and kneecaps moved. While the procedure itself went well, within twenty-four (24) hours things began to go awry. In the midst of recovering from the operation and dealing with the pain of my legs being stretched, my digestive system was on the fritz and I was experiencing pain unlike anything I'd ever dealt with before. After many tests and puzzled doctors, it was determined that I had an intestinal blockage and therefore my systems needed to be cleared and I could consume only water to do this over a period of weeks while my stomach was pumped daily. As time passed I deteriorated, well aware that skin turning yellow and sunken was not a positive sign. More than once during this hospital stay I cried myself to sleep knowing I was dying and the outlook was grim, yet, in His Grace, the King of Kings, the Hero of the Universe, assured me I would not yet meet my end in that hospital. Upon being released from the hospital, a stay that spanned almost three weeks, life was forever changed. Long past were the typical cares of a teenager, as I had been clearly confronted with my own mortality.

Upon graduating from high school and heading off to Cedarville University (just a few days after September 11, 2001) to study Law and Public Policy, my Freshmen year offered up another challenge: joint and muscle pain that I still live with today. The following summer, the doctors informed my parents and I that my "facing life head on" attitude didn't sit too well with my body as I was getting older and the wear and tear I was putting on my body was causing the discomfort. The solution relegating life to the three wheels of an electric scooter instead of the three wheels of the custom tri-cycle (the operation of which was the culprit in my joint degeneration). Thanks to this new-found nemesis firmly planted in my life, my senior year of college at Cedarville was the most difficult as pain and fatigue reached new levels. To help combat this, keep me safe from the elements, and give me greater mobility my father created The FENX Project: a custom mobility device crafted to look similar to a cross between a fighter jet and a Light Cycle from the movie TRON. At the time the device was unveiled to both myself and Cedarville, no one had any idea about the adventures that would follow.

In the Spring of 2006 I moved to Washington, D.C. permanently to work on Capitol Hill (Previously I had interned at The Heritage Foundation in the Fall of 2005). Finally, I was starting to live the dream that was planted deep in my being by way of those two friends in 7th grade a decade before. It has in no way been an easy road, often one fraught with frustration, pain, and difficulties on many levels, but nevertheless it has been clear that so far this is the place I am purposely planted with the intent to impact people more-so than public policy (for the fist is eternal and the other, while important, is not). As an example, a few years ago I was at a pro-life event on Capitol Hill. At this event, slides from a National Geographic special on fetal development via ultrasound were being displayed. When a slide appeared showing the development of a baby at 30 weeks appeared I commented to the folks at my table that "that must have been what I looked like when I was born" The table stared at me in shock. I quickly recounted the details of what my parents had told me about those early days for the folks at the table of Members of Congress, family members, and some staff. They couldn't believe it. A fellow staffer and friend of mine commented on how I went through all that and now work on the pro-life issue in Congress; I nodded and this friend could not get past how amazing that was.

My first weekend in town in March 2006, a test run with The FENX on the National Mall showed that another FENX model was needed and my father went back to the drawing board to design something new. The new FENX arrived in June 2009 and was most certainly an upgrade. Late one night in July, I ran into a group of folks with a high end camera who started filming me. At first I ignored them, I just wanted to get home. Then a little voice in the recesses of my mind suggested I stop and talk to them, find out who they were. Twenty minutes later I had discovered they were a news crew from the BBC (they now knew just about everything about me) and the camera woman I'd given my e-mail to had a husband who was obsessed with cars, planes, and happened to be a producer for NBC Nightly News and the Today show. I went to bed that night not giving it all that much thought because NBC News and National TV was just out of my league; if it was the center of the universe I was the planet that it was farthest from. A week later I received an e-mail from the husband/producer lauding the footage he had seen and wanting to know all he could about dad, the project, and myself. So immediately I called my Dad and talk with him, explaining what the producer wanted and how this was something we needed to do together. Once we agreed to do this together, I called the producer to answer questions and schedule time to record the FENX in action and be interviewed. Additionally, the DC producer flew to Michigan himself, because as he told me "I have to meet your Dad". I later learned that stories like ours where a son in his late twenties considers his dad a close friend and confidant isn't a regular occurrence in society today. Over the next few months we worked with NBC to get the story all on tape and ready for broadcast. Thanks to more pertinent national issues like Health Care Reform, the FENX tale didn't run until late August 2010.

Once the NBC piece aired and things quited down, I was pretty sure that would be the end of the FENX in the limelight and on TV – I couldn't have been more wrong, as a friend I had interned with at The Heritage Foundation years ago wanted me to be on the pro-life TV show she helps to produce. The show is called Facing Life Head-On and deals with various issues related to abortion. I was asked to be profiled for a double episode dealing with the quality of life for folks with difficult medical issues and physical challenges. While the FENX was not the focus of the episode, certainly made an appearance. The idea for the episode is that quality of life for such individuals is actually possible, despite forces within our culture proclaiming otherwise, saying the humane thing to do is to give folks with these challenges no chance for life at all because a good life is not possible for them or because it's too much of a difficult burden for the family to bear. What culture is telling us is a sinister and pernicious lie, and if my story can help expose this for what it is and cause others to question what society communicates, then I had to do it. As I have already mentioned, the doctors said similar things to my family about me shortly after I was born. While all their experience, teaching, and training was telling them one thing the Creator and Master of the Universe was saying something else and I think my parents listened to the right voice. What the doctors never understood is that God was then (and is now) the central part of the equation, and when God reaches down and ignites the path of destiny within someone (whom He took the time to form and knit together) all bets are off; this cannot be quantified. It's why the doctors looked at me a few years after I was born and marveled that I was still on Planet Earth. The desire within every individual to persevere, experience liberty and be more than they perceive themselves to be is innate, part of how God shows us there is more to the universe than what we see – it's like George Bailey prayed "I want to live again, please God let me live again" - we want to experience life not the opposite.

This unimaginable adventure doesn't seem to be ending anytime soon either, as the Lord continues to orchestrate things that I know I couldn't make happen and are far beyond what I could imagine possible. By God's Grace I know I can't take personal credit for much of my adventure so far, but this I do know: there are individuals on Planet Earth that have been impacted by my life and it's not too much to think they are better people for it; in some cases I KNOW futures have been changed and thus the words of Lady Galadriel ring true in real life.

 

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.