Drool in my hair, leftovers from lunch on my shirt, and a full heart. Big hugs from my not-so-little brother are my absolute favourite. He is the only person I know who loves without limits, and never holds back. His life the past 21 years has been a rollercoaster filled with ups and downs, but one thing about Nigel remains the same: he is simple and he is pure.
Nigel was born June 3, 1993, a day that changed our family forever. Nigel has a very rare condition called “linear nevus sebeaceous syndrome.” I bet that 98 percent of the population has never even heard this term before, so I’ll explain Nigel the best way I know how.
He functions at about the age of 2. He is nonverbal and needs 24/7 care, including feeding and diaper changes. He also suffers from severe epilepsy, and after one brain surgery, countless medication combinations, and a vagus nerve stimulator implant, I am sad to report he still seizures on a daily basis.
Growing up with Nigel has been a journey, and our relationship has changed throughout the years.
As a little girl, I really didn’t see what made him different. I just assumed everyone had a team of nurses, therapists and doctors when they were little… it takes a village doesn’t it? I got to spend lots of time with my granny and my aunt when Mom and Dad had to travel to appointments, but I never understood the seriousness of it all; I just thought everyone wanted to hang out me.
When Nigel started at my school I remember being so excited. My little, adorable, brother was at MY school. I got hugs in the hallways and hugs at recess. He was my little security blanket that I knew I could go to when I needed some familiarity.
Not to mention, everyone else thought that Nigel was pretty cool. I can remember other kids playing with him on the school yard and singing songs to make him laugh. Most of the time this made me smile, although I will admit I would often remind the other kids that he was MY brother, so you know… back off a bit.
Our relationship got foggy when I entered into my teens. Things are so awkward during those years. I was rake thin, with braces and not-so nice skin. All I wanted to do was to fit in, and having a brother that was “different” didn’t help in that area. I hate to admit it, but I was embarrassed of my situation at home and I was scared of what other people would think. This went on for about four years.
I would only invite certain friends over who knew about my “situation” and I rarely talked about Nigel with anyone but family. I went on to high school as did Nigel two years later. My parents made the decision to send him to a different high school for two different reasons. One was that the other school was smaller with a better Special Ed program, and the other was to give me my own space. I will always be grateful that they let me have my high school years on my own. As much as I love Nigel, I needed that space to grow.
I can remember so clearly when everything changed. There were two separate events that completely dispelled all of that embarrassment stuff that haunted me during those puberty-infested years. I was probably about 16 when the first one occurred. I was in high school at the time in a family studies class. We were assigned a project where we were to address different issues that families faced. For some reason, I decided to do the project on my own family.
I don’t know why, but I was determined to break the silence I had kept for so long. I can remember doing the presentation (and holding back tears while I did it), and at the end having people come up to me and say that all this time they had thought I was an only child. People were kind of shocked, but no one treated me any different. Progress.
The second incident was not long after the ice-breaker moment. I was sitting with friends in the auditorium waiting for an assembly to start. A few students with special needs entered the gym with their EAs when I heard two students down from me say, “Here comes the retard parade.” I could literally feel my blood boiling and my hands shaking. I don’t think I had ever been that mad before.
Without hesitation I leaned right over and gave that girl a piece of my mind. It was like the words were just spilling out of my mouth. I ran up one side of her and down the other. I really can’t remember everything I said, but I do know that something along the lines of “If you said that about my brother I would kick your a**” came out. She replied with “Oh sorry, I didn’t know.” From that day forward… everyone knew. How could I be embarrassed of someone so cool and so gosh darn cute? It was like I did a complete 180.
Today I can describe my relationship with my brother as “unbreakable.” We have this bond that I don’t think anyone will ever understand. I love him more than anything in the world, and I would do anything for him. We spend lots of time together, laughing and singing and of course hugging.
I talk about him all the time. I share stories about him, I beam with pride when he does something totally amazing and fantastic like taking off his own shoe, and I am definitely not embarrassed. Although I do feel bad about my years of silence, I think that it was normal. I was pretty much embarrassed of everything back then (ask my mom!).
Today I am a very proud sister, blessed with a very special brother (struggles and all). He has made me strong, he has taught me what true love looks like, and he has reminded me every day that life does not have to be perfect be wonderful.
Rebecca is an independent publisher working to help siblings of children with emotional challenges.