As we were growing up, my brother was no different than any of my friends’ siblings. Sean was 1 year and 19 days older than me and we had the kind of relationship that many siblings close in age have. There were times we loved each other and times we couldn’t stand each other. As we got older, we went on to have more separate lives, but we remained close, speaking on the phone or visiting regularly. What did set my brother apart from my friends’ siblings, however, was that Sean had physical and intellectual disabilities as a result of having cerebral palsy (CP) and a genetic condition called Neurofibromatosis (NF).
CP is a neurologic condition that affects muscle tone (how easily muscles stretch and contract) and the ability to coordinate movements. CP can affect people in many ways. For my brother, having CP caused him to have tightness in many of his joints. He had difficulty holding items in his hands and being able to walk. Sean had CP because he was born very prematurely.
NF is a genetic condition that is primarily associated with tumor growth along the nerves and changes in skin pigmentation. Sean’s tumor growth started slowly with just a few tumors that were visible on his skin, but over time he developed tumors in his brain and along his spinal cord which caused him to require the full-time use of a wheelchair by the age of 10. Sean had NF because he inherited this condition from our father. Because of the CP and NF, my brother also had seizures and intellectual disabilities. It’s hard to know exactly which of the conditions caused those issues for him or if it was a combination of both.
During childhood, I never noticed just how much having a sibling with a genetic condition impacted my life. As far as I was concerned, what I was experiencing was just part of every-day life. My brother went to school; I went to school. Granted, we went to separate schools because he went to one that was geared towards children with special needs, but school was school in my eyes. We both had friends in the neighborhood who we played with after school and on the weekends. In fact, we had many of the same friends. We played all of the same games with our friends that any of the other kids I knew played – tag, roller skating, bike riding, hide and seek, and make believe with toys like GI-Joes (him) and Barbies (me). My brother just had other accommodations made so he could play along with some of the games, like a special bike that someone could push for him if he needed or roller skates that could strap onto his shoes. At home, Sean and I both had rules that we were expected to follow and chores that we were expected to complete. My chores were different than Sean’s, but I didn’t know anyone who had the same chores as their siblings anyway.
What I did notice as a child was that there were some pretty cool things that I got to do because I had a brother with special needs (at least that’s how I perceived it in my little kid brain). What I thought was the best thing about having a sibling in a wheelchair was that any time we went to an amusement park we got to board the rides through the exit and, often, we were permitted to ride twice in a row. What kid wouldn’t see that as a perk? I also got to meet a lot of interesting people. My brother spent lots of time in hospitals because of one surgery or another to either release tightness of his tendons or remove tumors that were causing problems. Most of the time, he would be at one of the big Children’s Hospitals in the city near where we lived. Between the other kids in the hospital, the hospital staff, and the people we’d meet outside of the hospital (like the food cart vendors – they were my favorite!), my eyes were opened to the fact that the world is made up of all kinds of people.
Now that I’m an adult, I can appreciate all of the other ways that my brother impacted my life. There is no way that I can fit everything into one blog post, so I’ll just mention the highlights. The biggest impact that having a sibling with a genetic condition made was that it directed my career path. From the time I was very young, and in large part due to everything I watched my brother and parents endure, I knew that I wanted to be in a helping profession. Then, in high school, when I started researching NF and why my brother and father were affected but not me, my interest in genetics took root. I had had conversations with my mother about the guilt that my parents felt over not knowing that my father had a hereditary condition. From this, I knew that I wanted to help families who were in a similar situation to mine. So, as a junior in high school I researched careers that would allow me to do that and I came across genetic counseling. I decided at that point that genetic counseling was the career for me and I haven’t strayed from that path since.
Having a sibling with a genetic disorder also taught me about having empathy and understanding for others’ differences. I have a deep appreciation of the fear, anxiety, and frustration that comes along with many of the genetic disorders I now speak about with families on a daily basis. At the same time, I also know the strength, joy, and love that people with special needs can bring to their families. I understand that sometimes the good outweighs the bad and sometimes it is vice versa.
Watching my brother and all of his school and hospital friends grow up also taught me that people who are differently abled are just that, they are people. They are human beings with the capacity to form meaningful relationships and live meaningful lives. Sometimes they can be sweet and kind and other times they can be miserable and nasty, just like anyone else.
Was it always rainbows and butterflies to have a brother with special needs? No. There were, and continue to be, challenges and heartache. You may be wondering why I’ve written about Sean in the past tense. This April will be 13 years since he died. He was 25. I was 24 at the time and had recently given birth to my first daughter with whom he instantly fell in love. He lived his last days fighting as hard as he could to be healthy so that he could see her grow up for as long as possible. Even with having to experience something so heartbreaking at a young age, I would not change anything about having Sean as my brother. He was, and continues to be, one of my biggest inspirations.