One of Webster’s definitions of a pioneer is ‘one of the first to settle in a territory’. In July 1994, our son, Dan, was born with 5 major congenital heart defects (CHD). That day, our family settled into the territory of forever being a heart family. The path we have walked over the last 2 decades has had its ups, downs, challenges and joys. Back in 1994, the prognosis for a baby born with half a heart (known as hypo-plastic) was much less certain or optimistic than it is today. But with the help of so many people along the way, our son graduated high school in 2013 and set his eyes on going to college. He chose Indiana Institute of Technology and proceeded to apply for their Presidential Scholarship. Part of that application was to write an essay: “How Are You a Leader?”
Dan opened his essay, “It is hard to be a leader when you spend your entire life behind.” Dan went on to share a little about what life was like growing up with half a heart from his perspective. Many children born with CHD don’t have just their physical health to deal with, but many have developmental delays, social delays, cognitive and learning challenges and secondary physical issues as a result. Surgeries and hospital stays add to the difficulties of being able to keep up with their peers. For example, Dan underwent a total of 12 surgeries by the time he was 13 years old; some for his heart, the rest for various other physical issues. He gave a glimpse of why he couldn’t be a leader. At the end of the essay, he concluded by saying that he never considered himself a leader, but maybe he could be a pioneer- a first settler to show other CHD kids coming behind him what they can accomplish.
Dan was awarded one of the four Presidential Scholarships that year. For the last 3 ½ years he has settled in Ft. Wayne, Indiana and been a full time student. In addition, Dan has held a part-time job most of the time he has been at college. He drives a car and has lived in his own apartment for the last 18 months.
In just four short months, Dan will graduate with honors with a Bachelor’s Degree in Psychology. He wants to work in an educational or medical setting helping kids like himself forge their own territory.
So, when you have a child born with CHD, or any significant challenge, remember: being a leader isn’t everything. But they can be a pioneer and push forward and explore new worlds for themselves and others coming behind.