May 19, 1995
One of the things that I remember most about this day was the amount of food on the dining room table. The people that flooded our house that day came bearing meat trays and brownies and sad faces. It's interesting how when death comes, we bring food. It's like we don't know what to say or do, but we can make casseroles and pie and maybe that will convey everything we don't know how to say.
I was hugged a lot that day. I heard, "I'm so sorry Jennifer." I was asked how I was doing and I remember not knowing how to respond to that. Mostly because I wasn't sure how I felt but I knew then that it wasn't all sorrow, there was also hope. Everyone's "I'm sorry's" hit me like a sharp arrow and I wondered if I would be caught for how I really felt and what I really thought. The truth was, I was ready to move on and let go. This journey, his life, had felt long for me. I was looking forward to the relief his passing would be. And still to this day, I feel guilt for that longing.
My mom stayed at my brother's side all day long. I remember keeping a distance - like usual, but I wouldn't even go near her. Her tears never stopped. I wondered if she would have had that many tears if it were me. If it was me that was dying instead of him.
At one point, I remember wishing it was me. Only because I wanted my mother to love on me like that. Stroke my hair, feel her tears fall on my own cheek because she was holding me so closely, feel the warmth of her body because she was embracing me. I never knew those touches. He did. He always had.
A.J's mattress had been moved into the living room. He laid there on his race car sheets going in and out of consciousness while friends and family and pastors and nurses and perhaps anyone who ever knew him, came in to say their goodbyes. They hugged us and bore witness of the remarkable child that he had always been. Stories were told about him, of the things he said and did.
And that was true, he was rather remarkable. That was one of the reasons I envied him. It was as if he had been wired with some special connection to spiritual things that made him not just special needs, but genuinely special. He seemed to be very in tune with God. He never complained about being sick or about having to be in the hospital so much. Sometimes I wonder if he knew he was only going to get to live for ten years.
That morning he told my mom he was going to heaven soon. He asked her if she thought there might be a mommy there that needed a little boy to love. Still to this day, I wonder what kind of child thinks to ask this kind of beautiful question.
I remember feeling scared that he might die while everyone was there and I kept wondering what we would do if that happened. I watched his chest all day, making sure he was still breathing. I was convinced that if I kept my eyes on him I could keep him from taking his very last breath. Watching him gave me a sense of control and purpose. And I was scared I might see that - his death, his departure from this earth, his very last breath. Something about that terrified me.
By the end of the day, the visitors had come and gone. All that was left was family. I hadn't cried all day long. I had eaten salami and cake and chips. I hid some in my room because I didn't know how to answer questions. I spent some time outside. I tried my best to detach and numb out. But as we sat there and the clock ticked by, as we waited for the inevitable, I knew it was coming. Death was coming for my brother.
He was asleep - there on his mattress on the living room floor, my mother still sitting by his side stroking his hair. His coloring had faded.. His skin was both gray and yellow, his eyes closed but dark and already lifeless. I knew in that moment I wouldn't see his eyes open ever again. I wouldn't hear his laugh. I wouldn't have to yell at him for not barging into my room without knocking. I wouldn't have to go to any more doctor's appointments or hospital visits. I wouldn't have to watch my mom give him all of her attention.
Life as I knew it was about to radically change. I just didn't know that night, exactly how.
But May 19, 1995 was the very last day I ever had a brother named A.J.