What I want you to know about losing a sibling as a child

My brother entered my world in 1993. I was three years old. My parents had no idea he was going to be born with genetic abnormalities until they were in the delivery room. I didn’t understand that this was not how things normally went when babies were born. My brother had to spend time in the hospital immediately after he was born and my parents had to figure out what their next steps would be: He was going to require medical and developmental supports, and he was going to require multiple surgeries and even more doctor’s appointments. Over the course of his life, we came to appreciate our Canadian healthcare system more and more. His care would have been virtually inaccessible for us had we been an American family. I’m not going to get into the details on what all was “wrong” with my brother but I will say that development was halted for about 48 hours while he was still in utero, and that the difficulties he faced were a direct result of that.

What I remember and love most about him was his fierce will to live, his sassiness and his stubbornness. Connor wouldn’t do anything simply because one of us wanted him to. He had a mind of his own and he gradually learned to hold his head up, sit up, and even walk although the the doctors had told my parents walking would never be a reality for him. He spent hours upon hours in the hospital over the course of his short life. He had surgeries and specialist appointments. He also had a family and a community of people who loved him dearly.

As a kid, I never really knew that the abnormalities that Connor had even existed. My mother still fondly tells the story of a play date I had when I was about five years old when I explained to my friend that “what was wrong” with my brother was that he had an ear infection.

He and I had a close relationship, and I remember wanting to be with him and to look out for him. I was the big sister, and after all, that came with a set of responsibilities.

I want you to know that I felt the need to protect him from stares and questions from strangers. Children and adults alike. I want you to know that at times, my brother was not treated as the human being that he was. I want you to know, especially if you are a parent, that you are responsible for educating your child on how to treat people with disabilities with the respect and dignity that they deserve as members of the human race. Teach your children when they are young.

I also want you to know that even though I was only six years old when he died, that I knew what death was. I even knew he was gone before even my parents ever told me. I want you to know that children, more often than not, understand a lot more than you think. I want you to know that nearly two decades have passed and I can still remember every detail of that night. I want you to know that I’m not scarred for life as a result of my experiences. I want you to know that my experiences have shaped who I am.

Although a number of our family and friends didn’t understand, my parents chose to have me present at my brother’s funeral. A lot of people thought they were wrong. I want you to know that they weren’t. I needed to be there for the same reasons adults did: to mourn, to grieve and for closure. My brother was my best friend, and I needed to say goodbye to him. I want you to know that I’m confident I will see him again.

I remember it being difficult when I went back to school a few weeks after his death. I have vivid memories of my classmates singing some of Connor’s favourite songs so that they could watch me cry. I remember getting off the bus on my first day back to school to a classmate chanting “Connor’s dead! Connor’s dead!” at a the top of her lungs. And I’ll admit my classmates were young. But I want you to know that their teachers weren’t, and neither were their parents. I want you to know that death is a part of life, and when it touches someone you know, the best response is not pretending it didn’t happen, dancing around the issue or responding with platitudes, no matter how old you are. I want you to know that a simple “I’m sorry” is often sufficient. And I want you to know that my experiences in school would have been a lot less difficult had my classmates’ parents engaged in thoughtful discussion about death with their children. I want you to know that you cannot shield your child from death – especially at the expense of another child experiencing loss.

At 25 and looking back, I want you to know that I don’t want to be a part of anyone’s pity party. I want you to know that I’m often stuck when I’m asked about how many siblings I have. I don’t want to deny Connor’s existence or his impact on my life, nor do I want people to feel sorry for me. I want you to know that it does not hurt me when you ask me about my brother. I want you to know that when I say he passed away, I’m not looking for pity. Like I said, death is a part of life, and it just so happens it was a part of my life very early.

I want you to know that the death of a child had a profound impact on every member of the family. I’m not here to tell my parents’ story, although they’ve beaten the odds and are still together after all these years. I’m not here to tell you my youngest brother Spencer’s story, although his perspective would different than mine because he was only two months old when Connor passed away. I’m here to tell you my story. And that’s all I want you to know.