What is Real

John used to joke about throwing himself a wake while he was still here so that he could enjoy the party and all the stories and nice things people would say about him. In a way, the past few days have been a little like that idea. Though he has had mostly frustrating and difficult days and nights, there have also been some moments that were beautiful and happy. Family and friends have been stopping by, telling stories, bringing favorite foods, and just being present, making John the center of attention, which, as you all know, he loves.



Here are some highlights:


Having brother Frank, and donor sister, Lisa, and their spouses here, loving their brother, John.


A visit from friends with a brand new baby. John held Sierra in his lap and they smiled dreamily at each other.


Several trips in the wheelchair, over to the park behind our house with the guys, to throw the ball for Woody on delightfully warm fall days.


Sharing Danish pancakes with family and friends gathered round our dining table.


Reconnecting with old friends. The beautiful side of crisis is the way that it brings people together.


Watching home movies of happier times. Little boys, doing little boy things. Where did the time go?


A sing-a-long with Chris O'Connell, who indulged us with old favorites and had John clapping and smiling, and all of us laughing and crying.


And cuddled up, watching the rain, quiet and peaceful, and lovely, even if tears were flowing.


It's still very difficult to understand John, increasingly so. In fact, he has resorted to a thumbs up or thumbs down to answer yes or no questions, and to pointing to indicate he wants something, or wants to be moved. Even though he is suffering what most of us would consider worse humiliation in his weakened condition, I think the inability to communicate may be what is hardest for him.


He is able to stand briefly, with help, so that we can get him from the bed to the wheelchair, etc. but has lost much of his fine and large motor coordination.  He is most alert in the late morning but tires easily.  He seems to enjoy having friends stop by for short visits, and in spite of all the challenges he is facing physically, is able to let his spirit shine through. 

I have so many people to thank for thoughts and prayers, and special thanks to so many who have taken time out of their busy lives to make sure we are OK. To Mike and Jack for making John laugh, to Jen, Lisa, Jan, and Missy for wonderful dinners and treats, neighbors Bruce and Pat, Craig and Janice, Leslie, Patrick and Sue, also for dinners and treats, and making sure Woody gets his walks, to Ellen for providing a much needed break for me on Saturday morning, to Leti, (I suspect it's you that has been leaving flowers on my doorstep), to Daria and Gloria for shoulders to cry on, to my dear sisters Lia and Stacy, don't know what I'd do without them, to my son, John, who has put his life on hold and is here for both his dad and me, and to my teaching partner, Kim, and substitute, Penny, for holding down the fort while I am gone. I'm sure I have forgotten to mention some of you. Forgive me. I am feeling a little muddled myself and kind of running on empty, but know that your kindness is appreciated.


To all of you who have posted or emailed your kind thoughts about John and me, thank you. I read them to him daily. To Pat, and Mac and other faithfuls at the blogbar, thanks for following the yellowbrickroad. To manitooboo, Mo, and to whoever it was that posted that beautiful poem by Wendell Berry, thank you. Such peaceful imagery.


Here is a passage from one of my favorite stories, The Velveteen Rabbit. It just seems to fit.




"What is REAL?" asked the Rabbit one day, when they were lying side by side...


"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."


"Does it hurt?" asked the Rabbit.


"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."


"Does it happen all at once," he asked, "or bit by bit?"


"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in your joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."

I know you all understand.  Love, Dana