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"Each of us must come to care about everyone else's children. We must recognize that the well being of our own children is intimately linked to the well being of all other people's children. After all, when one of our children needs life-saving surgery, someone else's child will perform it. When one of our children is harmed by violence, someone else's child will commit it. The good life for our own children can be secured only if it is also secured for all other people's children. But to work for the well being of all children is not just a practical matter-- it is also right!" - Lilian G. Katz, Phd.

Saturday, February 7, 2009

The Odyssey of Love

The hospice Jay's at is named Odyssey, which is very fitting for a journey of this magnitude. I am sitting with other family, and there is a sense of anticipation. Sometimes we laugh, sometimes we cry, and right now everyone is sitting in quiet contemplation, each doing a different activity.

I hunted up the WiFi connection, Chris is playing Tetris on his cell phone, Aunt Susan is reading, and Mom is working on a baby blanket. Every once in a while he skips a breath, and we all pause and look up and check on him. There has been a steady stream of visitors tonight. We have sat and talked to him, and held his hand and been here as a family.

The staff is awesome. A nurse just came in and they are so respectful. She touches Jay and lets him know she is there and what she is doing, even though he is not conscious. They keep reminding us that the hearing is the last to go, and we are doing our best to fill the room with love, laughter, and companionship. The staff is very attentive to us as a family, but especially to Aunt Susan.

She hasn't had Jay as long as we have, and it isn't fair. Life is not fair, unfortunately and the best we can do is just keep going and celebrate what we have. Grief is a complicated process and so individual.

I am grieving too. I keep having memories of my uncle pop up suddenly.
I remember flying through the streets on the back of his wheelchair, and how he always let me push the buttons on the wheelchair ramp. I think to all the times we have almost lost him in the last six months, and it is hard to believe that he is not going to suddenly open his eyes and ask to go home now. He was my example of self determination, dignity and independence through disability.

He is my Uncle Jay. Peace and love. Peace and love.