When you boil it down, one way to think about life is as a series of choices. As a being possessing free will, you have a choice in everything you do. Some of these decisions are big, like who you marry, and some are small, like what flavor creamer to put in your coffee, but in every case you have a choice. A lot of the memorable moments in your life are characterized by a large or difficult choice you had to make. How you handle these tough decisions plays a crucial role in determining the trajectory your life takes, and thusly how happy and successful you are. I am fortunate that I was able to develop my decision making skills early in life. This was in part due to my disability forcing me to make tough decisions at a young age, but it was also a result of watching my parents successfully make difficult choices and modeling their behavior. A story from when I was just 2 years old is a perfect example of their decision making prowess.
Today, determining whether your child has a genetic disease like Spinal Muscular Atrophy can be done with a simple blood test. They know exactly what location, on which arm, of which chromosome that the mutation occurs. Back when I was being diagnosed in the late 1980s however, determining whether your child had SMA was in large part a diagnosis of exclusion. When your child didn’t start walking on time, your parents would take you to the doctor to find out why. After minimizing their worry by saying “Oh, he is just a late bloomer,” the doctor would try to figure out what was wrong by testing for the most probable causes. The doctor would keep crossing things off the list of possibilities until an answer was found. This was a lengthy process, and the further down the list you went the more serious the potential causes became. During these months of testing, the parents were left to sit and worry about the fate of their child. Then they finally get a call that tells them to come in, so that the doctor can deliver the bad news that their child is disabled. This was the call my parents got one day in 1988, or at least this is the way they recounted it to me.
My parents had received a call from my specialist to come in to discuss some of my test results. They made an appointment to speak with the doctor and met her in her office. Obviously, my parents were extremely anxious about what they might hear, but they also wanted to know what was happening to their child. The doctor matter of factly told them that I had a disease called Spinal Muscular Atrophy, and then she entered into a methodical, technical description of what that means. My parents tried to listen as she gave her robotic, detached explanation, but I doubt they absorbed much beyond “your child is severely disabled,” as they were busy trying to control their emotions and grasp what was happening. Eventually the doctor stopped reciting her textbook definition of my disease for a minute, and my parents were able to ask what happened now that I was diagnosed. This doctor, whose heart must have rivaled the Grinch’s in size, coldly said “Scott’s lungs will not allow him to live beyond age 3, so enjoy the time you have but don’t make long term plans.” My parents, who had just received the worst news that parents can hear, were both shocked and angered at her unfeeling words. This doctor in the same breath as saying that I am physically disabled, had put an expiration date on my life. My folks quickly excused themselves and left to try to digest what had just happened.
It is obvious that at this point my parents faced an impossibly difficult series of choices. They had just been told that everything they had imagined and hoped for in terms of their child’s future was not going to happen. Not only did they have to completely rethink what they wanted for their child, they also had to decide how to best move forward for both their now disabled child, but also their family as a whole. They had to choose whether they would keep me in a bubble so I would live as long as possible apart from the world, or if they would give me the best life they could with the time I had. They faced the age old question of finding the right balance between quality of life versus quantity of life. Thankfully for me, they handled this situation wonderfully. They found a good balance between keeping me healthy and letting me experience life. Most importantly though, they made the choices necessary to keep our family together. I have seen so many families with disabled children fall apart or weaken after the diagnosis of a child. I am so proud to say that, if anything, my physical situation has only strengthened our familial bond, and that is a direct result of the masterful, courageous decision making skills of my parents.
These difficult choices are just a few of the hundreds of tough decisions my family has been faced with throughout my life. I cannot even fathom how my parents found the strength and courage to get us through it all. Now that I am an adult, the majority of these difficult decisions fall to me, and I am only able to adequately handle them because of the skills my parents taught me. My ability to step back, look at a situation objectively, ask for advice, sleep on a decision, and trust my instincts are all tools I acquired from watching my mom and dad navigate the incredibly difficult situations our family faced. As much as I wish that these difficult choices did not come up so often, I am just as thankful that I possess the attributes to deal with them in a way that allows me to live a full, happy life.