Much of my identity as a child was shaped by my older brother Matthew, who had a congenital heart defect and developmental disabilities. My love for him was ferocious and complicated. He was a place where I put my best and worst self, my most gentle face and my most angry. Much of my identity as an adult has been shaped by his death seven years ago: in his memory, I try to put forth my gentleness and my ferocious love (plagued as I am with regrets for not loving him well enough).
Tonight is the anniversary of his death, and I would like to remember him.
I was two years old when Matthew had open heart surgery. I was twelve when—I think—he had stints put in. I was twenty-two when he had his second open heart surgery, and twenty-three when his heart failed.
Matthew walked on his tip-toes all the time.
The evening he died, I drove to the hospital in Rocky Mount and I visited with him. I walked into the room and he asked, “Why didn’t you bring me a Happy Meal?” He wasn’t eating much at the time, so I told him if he’d eat one, I’d bring him ten Happy Meals.
Matthew loved doohickeys. This was his word for any strangely-shaped (though usually cylindrical, for optimal holding) candy-related toy. He had quite a collection.
Matthew had a pretty serious speech impediment. He called me “Ah-yah” and Marti “Mah-ee,” but often enough, he’d just call me “Big Sissy” and her “Little Sissy.”
I remember the long hallway and Mom calling to us to get ready for dinner. I was three, and he was five. We raced down to the end of the long hallway, toward the bathroom to wash our hands. I stopped, but he kept running. He had to go to the emergency room to get stitches.
I was seven years old before I learned that the word “retard” (not uttered in our household) could be accurately, if crassly, applied to my brother. A girl in my class was visiting our home, and I got into an argument with her about it. The term we used at home to talk about Matthew’s differences was “special problems.”
When I was eleven years old, I was furious with my parents because they decided to put him in a group home. It felt like abandonment. I remember a moment in the red station wagon, criticizing my parents out loud, when my father made it clear that it was a hard decision for them and that they loved him too. I wasn’t the only one who loved Matthew.
When I was twenty-two, I was very critical of my father for bringing him home from the group home. I was wrong then, too.
Matthew tore the head off my Totally Hair Barbie—irreparably– not a week after I opened the box. I was livid. I probably exacted some vengeance, but I don’t remember what it was.
If you let him, Matthew would watch the same movie over and over again.
Matthew went through a difficult behavioral stage in his early twenties. Once, he took all of the pictures on the wall out of their frames, and folded the pictures up, presumably to keep. We came to understand sometime later that he may have been experiencing some depression then.
He was in a self-contained classroom at my middle school. When I was in sixth grade, we ate lunch at the same time. I said hello to him every day.
He had one blue eye and one green eye. You wouldn’t notice unless you looked.
He loved R&B. He’d change the radio to an R&B station whether you felt like listening to Usher or not.
When we were little—I was seven or so, so he was nine and Marti was four—we would play in what seemed like expansive woods behind our house. He was Batman, and I was Batgirl, and Marti was Robin.
After he died, I dreamed that I had easy labor and gave birth to a boy, and in the dream I sobbed when I chose the name Matthew.
Once, we were playing in a MacDonald’s ball pit with one of Marti’s classmates, and the girl said, “Is that your brother? He’s the ugliest thing I’ve ever seen.” To my credit, I did not hit her, but I did hold a grudge against her well into high school.
I did chase a neighbor boy down the street, striking him hard on his back, for picking on my “retarded brother.”
He was so little and muscular—though when he died, he was rail-thin.
There is a picture of him and me—tiny us. I was probably two, and he was four. We were wearing sweat suits and my face was smushed into his shoulder.
The Christmas before Matthew died, I didn’t put up a tree. None of us did—it was a hard, hectic year. Matthew loved Christmas. I wish we’d given him a tree. I think of him every year when I put mine up now. I do it for him.
The sunset sky on the evening that he died was gorgeous. My friend Jeff and I watched it from the Rocky Mount Krispy Kreme after I saw him in the hospital. The moon when I raced back to Rocky Mount that night, after Dad called to tell us that Matthew’s death was imminent, was big and low and orange.
I remember his voice. I remember him singing “La bamba.” I remember his whine, and I remember the crescendo of his excitement (never too loud—he was a pretty quiet soul). It is a gift, this memory.And one more: He wasn’t terribly huggy, but Matthew’s affection was very dear. He’d lay his head on my shoulder or lead me by the hand somewhere. Not long before he died–maybe a week–he had this one energetic afternoon where, when I showed up to visit him, he shot out of bed and got into a wheelchair and told me to wheel him to the soda machine.