A Sister Never Forgets

[AmericanChai]

I filled the anniversary of Adam's murder with busy things so that I would not have to think about it so deeply. How does one mark the day when everything changed forever? It has taken me most of my life to see past the violent details of the day. Some say that an event is like a ripple of water that continues to expand in circles until it reaches the edge of the pond and then travels back in towards the center. The lines cross and re-cross each other until they settle and the pond resumes its mirrored surface. The circumstances of Adam's death touched me more like a tsunami. It ripped my childhood out of my arms forever. When the water receded the landscape revealed a family that had been scattered and broken. There was no mirrored surface. The lake was gone.

Adam's death defined me for so long. It's not like having my brother killed and all that followed was something that I had in common with any other child. I have struggled in adulthood to untangle my brother's memory from his death. I have struggled to remember his face. His belly laughs. I have tried to find ways that he has touched my life, other than the horrible circumstances of his death and the years of hurt that became a part of my identity.

I did not have a typical sibling bond with Adam, because nothing about Adam was typical. He was born with Cornelia de Lange Syndrome. When most people saw him they thought he was much younger than his age because he was very tiny. At age six he was about 22 pounds. Adam was born with only one hand. The other hand ended at the elbow. He had long, thick eyelashes that constantly drew comments. His eyes were deep and intense. When he smiled the dimples would show. He only smiled for people he loved. Although labeled as "severely mentally retarded," Adam could play jokes. He could cleverly wrap his teachers and family around his finger without them realizing it until later. Once, when he didn't want to wear his hearing aids anymore, he managed to hide them in a toy at school for several days. How he managed to hide them-- when he had a hard time manipulating anything-- remains a mystery.

In a couple of weeks, I'm going to start nursing school. There are several reasons I want to be a nurse. I find myself at age 35 going back to school with that dream. I enjoy caring for people. I learned a lot in caring for my own daughter who has struggled with health problems from birth. I helped some friends through the births of their children and found that I was good at it. But before all that, there was Adam.

I saw him work for months to accomplish the milestones that most babies learn naturally. Other milestones he did not pass, but instead, he made up his own milestones and passed them. For example, one day he managed to slowly and painfully scoot combat-style (he could not crawl) down the hallway, into my bedroom. He got into my bucket of crayons that he had always eyed but was not allowed to play with because they were a choking hazard. He not only managed to dump them, but he ate several and left tooth marks on many more. He was discovered grinning and drooling in rainbow colors, extremely proud of himself.

I was not conscious of Adam's lessons when I was a child, but looking back now, I see the gifts that Adam left me. I never took for granted the fact that I could walk. I used to play with his wheelchair and try to steer it around the neighborhood (and ran it off more than a few curbs, tipping it and skinning my hands and knees). I realized how hurtful it was to stare at someone who was different-looking. I felt sad when people stared at Adam sitting in the baby seat in the shopping cart instead of smiling at him as they did with all the cute babies. Adam noticed the stares and it hurt him. Yes, even developmentally delayed people have feelings.

Adam taught me that anger comes from sadness and frustration. He felt that more than most kids his age. Most importantly, he taught me that it's necessary for healing to have someone to stay with you until the wave passes. No one should have to carry that burden alone.

When Adam laughed, he did not just giggle. He laughed with his entire being, sometimes until his eyes were wet with tears. When Adam laughed, we dropped everything and laughed with him.

Adam showed me how to listen to someone who is not able to talk. He could express more through body language than there are words to define in our spoken language. His teachers tried to teach him a bit of sign language to use with his one good hand but that was mostly for his caregivers to know if he was hungry or had a diaper to change. At home, we interpreted his needs through his emotions and our own intuitions.

Adam could appreciate the beauty that many of us can no longer see because our thoughts are so crowded. He loved windmills and wind chimes. He would scoot up under the Christmas tree and lie there watching the lights from a perspective that most of would not think of taking. One evening I crawled under there with him and we sat watching the stars twinkle in the sky of our own private universe.

Adam Benjamin Clark was my brother for six and a half years. But into that short life, he packed a lifetime of gifts for his big sister. His death defined my childhood, but his life defines my adulthood and how I see the world.

He will never be forgotten. Sisters never forget.

[kathye57]

I understand how you feel as my husband passed away suddenly right after i finished nursing school. I look at my patients differently they become your new family. you will make a wonderfull nurse.