It was after the death of my brother A.J. that I remember being the most full of hope. Maybe it sounds heartless to say, but much relief came with his passing away; that was just the truth.
For ten years, my life looked like spending days and weeks with him in the hospital, hearing his cries when they had to draw blood from his tiny veins, and going on countless doctor's visits to try and figure out what was wrong with him. Life looked like a distant mother who met to his every need and was consumed by colostomy changes, and tube feedings and watching every little thing he put into his mouth because he could react to anything in major ways.
It actually ended up being a sip of lemonade that sparked his bleeding and then he never stopped. I think she felt guilty for allowing him that sip, even though his death would have happened at some point. For two years she prolonged the inevitable as best as she could.
My brother died in May of 1995. I was just 14 and leaving the 8th grade. I loved my brother and his passing away was sad, yet I was full of this strange excitement about what the future was going to look like without him in our lives. I dared not speak such a thing though. I'm not sure anyone could have handled how big my emotions were or what they sounded like. And no one really asked either. Those are things I've been able to say to my family as an adult about how I felt about his death. But to have said them then...I couldn't. I didn't. I wonder though what would have happened if I did. Would I have been scolded for my ambivalence and accused of heartlessness?
For ten years life was all about him. And I could barely remember life without him.
I have one memory of my mom playing with me. One precious and beautiful and pathetic memory of her coming into my room and coloring on books. She colored the top of a tree green while I colored the trunk brown. I still remember her bringing me lunch - a chicken sandwich and animal crackers. And I remember that kiss she gave the top of my head. Oh that kiss - I tear up when I think about this tender and beautiful moment. Perhaps I think on it every time I give Tommy such a kiss. And I know that he will have more than one memory of those tender kisses on his head.
This memory was shortly before he was born. I was not yet four years old.
I turned four a month after A.J. was born. A birthday I can't remember. The family was busy hoping and praying he would just pull through and live. And while I wasn't totally or completely forgotten by my family those long ten years, it did still feel as though life were about him. He was the focus of everyone's attention. Perhaps my dad was the only one I felt like I mattered to more than my brother. His attention and affection and love for me those ten years were some of the only places I felt loved and happy.
My brother's death meant that just maybe I was going to get to have a "normal" life. A life that only included doctor's visits for a check-up or the occasional virus. A life that wasn't spent hours on end in the hospital keeping anyone company. A life where my baby sister and I were going to get to make all of these beautiful memories with our mom and dad. It felt so good to dream about a life where my mother paid attention to me and knew me and did things with me.
His death filled me with hope, that just maybe, I was going to be able to share with her what I was hoping I could and have share a life with my family that my heart so badly wanted. A.J. had gotten in the way. He got in the way of my very real need and longing and desire to be loved by my mom, who in her own woundedness, didn't know how to distribute her energies and affections to one healthy child and one sick one.
I remember my heart beating with excitement about future Christmas'. About prom and my wedding day and seeing her face in the crowd for me during performances in choir in high school. About conversations we could share on the couch about life and boys and just deep things inside of our hearts. I was hopeful about vacations that we could take - ones that didn't include having to worry about all of the medical supplies we would need to pack. Oh I was full of so much hope. So ready to make new memories. So ready to feel my mother's love for me. So ready to feel normal and happy.
And then he died. And something in my mom died when he did. Whatever died in her when A.J passed away is something I don't ever want to know. I fear it greatly - what would it be like to lose your own child? I could never understand her pain. And I don't want to know that pain.
Our distance became further. The gap widened and deepened. I tried to be careful around her. I stayed quiet. I kept hoping that maybe one day she would laugh again. I kept hoping that there would be a morning that she could pull herself out of her grief enough to just enjoy doing something with me. Anything. It never happened.
And then everything fell apart. My dad's affair. The trying to work it out. Torn up pictures on the bed my mom left out to hurt him - though I think it hurt me more. The moving out and the moving back in of parents. The drinking and watching my mother self-destruct. Her face wasn't there at any choir concerts. She didn't go with me to buy my prom dress. And by the time I got married, she had been dead for seven years. I was haunted by the lack of memories. All of the things I had hoped for never came to be. And every monumental life moment where I wanted my family whole and together and happy - it just never was. The lack of the happy memories still haunts me and saddens me to this very day. It's a gnawing I wish I could make go away.
It all just fell apart. Everything I had hoped for. Every memory I was hoping the four of us could make and have. Everything I wanted life to look like. It was all gone. My hope was dead.
Yesterday evening I felt this great sadness inside of me. And I was frustrated because I didn't know what was wrong with me. I couldn't feel and I couldn't sit and allow my heart to bleed out whatever it was holding inside. And I wanted something sweet. And so I ate sweet things and it felt odd and sad and weird because I haven't medicated that way in a really long time.
I awoke this this morning in a sugar fog. I felt gross and guilty. My coffee maker died and I was irritated that my morning was already not going like I like my Friday mornings to go. I turned on Sesame Street for Tommy and held him for the two minutes he wanted to watch it alongside of me.
And then I started to read. And I read of hope. And as I read I was flooded by these memories of what hope looked like to my 14 year old self. They were bubbling up inside of me and spilling out and I had to stop and write about when I remember last feeling so full of hope and dream and possibility. So here I am sitting in my pajamas and crusty eyes next to my empty coffee cup listening to Elmo singing. Life is in and around me and I feel the deep call within me to write more of my story.
Sometimes it feels like I just woke up and suddenly I'm married and 30 and have a child of my own. Because much of what happened and much of what didn't happen then still lives inside of me and who I am.