05 May 2012


Weill Cornell, the hospital where Lula died, looks to me a little bit like a cross between the British House of Parliament and a Mormon Church.  I suppose that's appropriate since medicine now seems to occupy a precarious middle ground between government and religion.  It's a building that will always be sacred to me and full of the most weighted memories of my life.

The pediatric unit held a service this week in remembrance of all of the children that died there in 2011.  They had 2 large trees with branches made of felt onto which a leaf with each child's name was affixed.  There were probably 50 kids names, but not nearly so many loved ones in attendance.

There were some lovely moments.  My favorites were a quartet of teenage boys from Laguardia High School singing "What a Wonderful World" a cappella, and a middle aged clown from the big apple circus singing "Somewhere Over the Rainbow"  while strumming a tiny banjo.  Other parts were painfully awkward but the fact that it was a homespun affair complete with ward clerks reading Emily Dickinson and singing nurses made it all the more sincere.  I pretty much kept my head down since the waterworks are on full blast these days with almost no prompting.

There was a lot of self congratulation on the part of the hospital staff for putting this event on, and I suppose this was as much for them- to remind themselves of the momentous emotional rollercoasters that they are a part of every day.  I think it can be a case of self survival in such an environment to shut some of it off, but it is occasionally important to stop and feel things for a moment or two.

Dr. Howell, who really was the woman who helped us to decide that it was time to let Lula die, was there.  She is a brilliant clinician who has obviously had the best training and experience possible but she also has an inherently maternal soul, which you either have or you don't.  Somehow it allows her to be empathetic and professional at the same time.  I was telling her about the passing of Lula's spiritual partner in the battle to be heard from inside of an uncooperative body, a friend of a friend named Kupajo Janda (Paj).  After Paj came down with a mysterious cerebral virus that put him in a coma, his family and friends waged a relentless battle for 7 months to get him the best treatments and care possible despite endless resistance from hospital administrators and doctors.  His circumstances made me realize how amazing the PICU at Weill Cornell was, and as I told her about Paj Dr. Howell knew exactly why;  she said "it doesn't matter how good a doctor is or how right they are, if they don't establish trust with their patients families their knowledge is meaningless".  I think the only way you can let go of your child without an unsurpassable mountain of doubt and fear is when you know that the best of everything has been done by the best people to try to help them.

It was a little surreal to have a sort of reunion of people who were part of such a tragic but powerful experience, like a high school reunion meets a funeral.  I don't think things like this bring closure-  I don't believe in closure, really- but it allows you to feel the distance you have from that moment.  It's a little sad but a little comforting to know that the sadness safely resides in this monolith full of other persistent souls.

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