For as long as I can remember my long-term life plan was to graduate from college, get a job in or near a major city, and most importantly live an independent, happy, successful life. I knew that this would be difficult, if not impossible to achieve given my disability, but it was my dream so I was going to dream big. Although I have had some setbacks along the way, and my life has taken me in directions I never would have imagined, I am proud to say that I have accomplished all 3 of the long-term goals I set for myself as a child. These goals may have taken years to attain, and they all required varying types and degrees of effort, but they all have one thing in common. In fact, every goal anyone has ever reached has this one common trait that was vital to their success. Every one of these achievements share the fact that they all began with a single, first step. All of them were set into motion by an initial, solitary action that turned these abstract ideas from mere pipe dreams meandering about your mind, into concrete objectives to be worked for.
Of all of the goals I have strived to fulfill throughout my life, living independently has always been the most important to me. I knew that in order to fully experience life and the world around me, that I would have to learn to function on my own as much as possible. I did not want the fact that I was physically disabled to prevent me from experiencing living away from home like everyone else, nor did I want to burden my parents with a lifetime of caring for me. Both of us had earned the right to enjoy life independent from one another, me as a young bachelor in the city and my folks with each other in retirement. As hard as it was to create a safe, functional environment for me to live on my own, and despite all of the countless obstacles that I had to overcome along the way, without a doubt the most difficult part of the entire, more than decade long, process was that first step. This initial stride towards building an independent life for myself occurred when I was only 7 years old, but I remember it like it was yesterday.
When I was 5 years old I met a young, smiley, little boy with sandy brown hair named Andrew. Andrew and I hit it off pretty quickly after meeting in daycare, and we ended up being best friends for the next 10 years. Like all young buddies, we would frequently beg and pester our mothers until they would schedule a play date for us pretty much every weekend. Now, Andrew coming over to my house was no problem, because my house was obviously already wheelchair friendly, but me going over to his house was not quite as easy. Although this one-way arrangement was alright for a while, it didn’t take long before both he and I wanted to play with his toys at his house too. Fortunately, life works in wonderful and mysterious ways sometimes, because my mom came to find out that Andrew’s mom worked with mentally and physically disabled children. This not only meant that she would be familiar and comfortable with helping me and having me in her home, but more importantly it put my mother’s mind at ease enough to allow me to venture out without her there. Over the first year or two of our friendship, Andrew and I spent at least 4 afternoons a month at each other’s houses doing all of the fun things little boys do, like playing with his dogs, shooting spud guns, and playing flashlight tag.
As we got a little older, we got to the point where a single afternoon was just not enough time for us to spend together. Like most young best friends, we were ready to take our friendship to the next level, the sleepover. Our first several sleepovers were at my house, and as Andrew had spent nights away from his parents before, this was not really a big deal. Just like with our play dates years before however, we eventually wanted to have a multi-day visit at his house. There was a small problem with this though, beyond the obvious logistical issues that had to be addressed, like who would reposition me through the night, finding a suitable bed for my body, etc. You see, in the more than 2,500 days that I had been alive to that point, I had never spent the night away from my parents, and the whole concept of being away from them overnight terrified me. I would think things like, “What if I get hurt and need my mom? What if Andrew’s mom doesn’t wake up in the night to come turn me? What if…?” A million “what ifs” would whirl around my brain every time I thought about staying the night at his house, but eventually despite my fears and reservations, I worked up the courage to do it.
I packed my backpack with all of the sleepover essentials, you know clothes, toothbrush, video games, and Ninja Turtles, and my mom dropped me off on a Friday evening, gave me a kiss, and said, “See you tomorrow.” Andrew and I spent the evening having a blast. We ate pizza, played outside until it got dark, and then watched ninja movies (and of course acted them out as we bounced around the living room). Then it came time to settle down, brush our teeth, and start going to bed. At this point, I started to feel those “what ifs” flood into my mind, and I felt very uneasy about this whole sleepover thing. After 20 minutes of Andrew and his mother trying to alleviate my fears and attempting to coax me into staying, I finally decided that I just couldn’t do it. So, I called my mom in the middle of the night, packed up my things, and went home. I may have lost the battle and failed to overcome my fears, but I was not defeated, not by a long shot.
As I have mentioned many times before, I am not one to give up, and I have the conviction of a Tibetan monk. A few weeks after my epic failure at spending the night, I worked up the courage to give it another try. I had talked with my mom, Andrew, and his mom about my fears and those “what ifs” that took over my brain, and after our discussion I felt much better about the whole situation. Once again, I packed my overnight bag, and my mother dropped me off with a kiss. After an evening of fun and food with my best friend, it was time to start winding down and getting ready for bed. I’ll admit that I still had quite a bit of anxiety about sleeping over, but I mustered up the courage to soldier on and give it a shot. And you know what, everything went fine. Andrew and I spent the night on sleeping bags on his living room floor, and his mother had no problems waking up to reposition me throughout the night. I slept well, woke up the next morning and made homemade donuts with icing, and then played until my mom came to get me. I was so proud of myself when I got home. I had faced my fears and gotten to experience something fun and new. Most importantly though, this seemingly insignificant event was the first step to me achieving an independent life for myself.
For an able-bodied child, their first sleepover may be a big deal at the time, but in the grand scheme of things it is not a major, life-altering event. For children with a severe, physical disability however, spending the night away from your parents for the first time is an achievement to be celebrated. Not only is it a big accomplishment in and of itself, but it also brings with it several important life lessons. For starters, it gives the child a safe environment for them to practice being responsible for their own care and safety instead of their parents. This also shows them that they can function and get around without their folks, and that they can rely on other caregivers besides their family. Additionally, it illustrates that in order to get the most out of life and experience everything you can, that sometimes you have to be brave enough to face your fears, overcome all of the “what ifs,” and try something scary and new. This is also a large step for the parents, as it shows them that their fragile, disabled child can operate and live a happy, fulfilling life without their constant care and attention. This singular event opens the door in your mind to pursue an independent life for yourself. It is the first step in the long, arduous journey towards a self-sufficient life.
Just as I eventually achieved my life-long dream of living on my own, you too can accomplish any goal you can imagine. No matter what your objective is though, you will always begin your travels on the path to success with a single, first step. It may seem insignificant at the time, like my first sleepover starting me on my way to independence, but that doesn’t make it any less important. And I assure you, when you do finally reach the finish line and realize your goal, you will look back on your journey and value that first step as one of the most important moments in your life. What long-term goals are you putting off pursuing? What dreams have you put on hold? Stop making excuses, face your fears, overcome the “what ifs,” and take that first step towards the life you want for yourself. Even if your first step is in the wrong direction, you will still be moving towards your goal by learning from your mistakes (just as I failed during my first sleepover). Start your journey towards the happy, successful life that is out there waiting to be achieved, if you just have the gumption to take that first step.