When you grow up with a degenerative disease that you know is going to shorten your life and have to face death at a young age, you look at life a little differently. My mind is some weird concoction of a 20 something male who sees a lifetime ahead of him mixed with the lessons and wisdom that often come much later in life. This unique combination does however give me great perspective when I take stock of my life and try to identify what is most important. I am always surprised when I reminisce in this way, how it is the little things that have the most profound impact. It is always the day that while you were living it probably seemed so inconsequential, but looking back you wouldn’t trade for anything, that you find moves you the most. These little things and ho hum days are the things that comfort me when I am in the hospital, struggling to breathe, not knowing whether I will make it out. These are the things to cherish. To show you how powerful an average day can be, I will tell you about one from my childhood that is very special to me about my dad.
When I was younger, I was fortunate enough to be involved with the Muscular Dystrophy Association (MDA). MDA is a wonderful charity organization that helps people and families with neuromuscular diseases like mine, and one of the ways they help is through their MDA clinics. At these clinics instead of the patient making separate appointments to see each of their many specialists (neurologist, cardiologist, pulmonologist, physical therapist, pain specialist, etc.) and driving all over town to see them all, the patient makes an appointment at the MDA clinic, where all of the specialists take turns going from room to room seeing each patient. MDA also arranges these amazing clinics at a much reduced cost to the families. Twice a year every year as I was growing up, I would travel 2 hours to the MDA clinic and spend several hours getting poked, prodded, and probed by half a dozen doctors. Although this was an amazing opportunity for me, and I am so thankful I had it, as a kid I was not a fan. What kid wants to get up super early, spend 4 hours of his day in the car, and get tortured by strange doctors for 3 or 4 hours? I am guessing not many, and definitely not this one. Surprisingly though, it is one of these days that I loathed as a child, that I look back on as one of those special days I will always remember.
I think I was about 9 or 10 years old, and my dad had taken off work to take me to my biannual MDA clinic visit. It started out just as dismally as it usually did with getting up at the crack of dawn to drive there. This was immediately followed by the parade of doctors each inflicting their own unique brand of pain on me. At that point, I was just happy to be done and ready to go home, when my dad said, “Hey, we don’t have anywhere to be. Let’s go get some wings.” So, he and I went to this little wings place we both really liked and took our time slowly going through baskets of wings and curly fries, while watching and talking about sports. After hosing off all of the stray buffalo sauce, he then took me to this hockey equipment and memorabilia store. Before we went inside he looked at me and said, “I will buy you the jersey of any team you want and that will be your team you root for. But, you can’t pick the Blackhawks (family joke, that I had to include).” We went inside, and he took the time to show me each jersey and telling me the team (I picked Dallas. Go Stars!), and then we spent another hour just looking around and talking about hockey with the owner. We then went home.
Now, I never would have guessed that this day would have such a lasting effect on me, but I remember it as one of the happiest days of my life. First and foremost, I got to spend the whole day one on one with my dad doing “grown up guy things” at an age where feeling like a man is so important. We went to eat at a place that we liked without having any time constraints or places to be. He surprised me by taking me to the hockey store and sharing one of his passions with me by teaching me about the teams. I got to pick out a jersey, which became my team that allows us to share our love for hockey to this day. He went out of his way to take a day that I hated, and only reminded me of how bad my disability can be, and turned it into a fun day on the town. It was just a perfect afternoon between me and my dad.
Even after writing this out and reading it back to myself, it doesn’t necessarily sound like a day that would rank so high in my memory. My father and I did lots of things together over my life, and many of them would seem much more powerful, but this is the day that sticks out. Every time I think about it, a big smile spreads across my face. I am a lifelong Dallas Stars fan, and my dad and I still enjoy talking hockey. This is one of the memories I go to when I get scared that I may not make it, or when I am missing my family, and it helps me feel better thinking about that day with my dad. It’s one of those little, insignificant things that end up having a huge impact on your life.
I know that no matter how good of a writer I was I could never make you totally understand how much this day means to me, and I am by no means a good writer, but I hope you can get enough of my feelings to see my point. Take the time to appreciate the little things in your life. Things that seem trivial today may turn out to be the things you value the most down the road. More importantly though, completely enjoy the quality time you get to spend with your loved ones, especially those times when it is just the two of you doing something together. Two $7.99 baskets of wings and a couple of hours at a sporting goods store can turn into something you remember forever. These are the days you will look back on and cherish later in life, so create as many of them as you can, because before you know it you may lose your chance.