A boy named Lennon

welcome

Lennon was born with a rare metabolic genetic disorder called Urea cycle disorder - CPS Deficiency. He was diagnosed at the age of 4. In November 2008 he underwent not one but two liver transplants in order to save his life and could potentially face another transplant. This is his story.

Yeah we all shine on, like the moon, and the stars, and the sun. John Lennon

To remember the experience


November 18, 2010 it will have been 2 years since the first liver transplant surgery. It (in my mind) should be a big celebration of life - of his life - of having been given the chance to live life. Clearly in my head I know that it is what saved his life but it is heavy in my heart that we will have to experience this again.

I remember the time before despite being riddled with ammonia in his system the zest of life he has - this indescribable thirst of living. I remember the months we spend praying, hoping, crying, praying some more that he will make it. That he has enough will power to come off the breathing tube - that his body has the strength to do the healing it needs to do.

I remember the time when he came home like a wilted little flower who was unable to embrace life - who appeared depressed and the light in his eyes was gone. I remember the days and months it has taken for him to be Lennon. To be center stage, to be full of life, to be funny, to keep us on our toes, to be charming and even manipulating everyone around him to get his way. I remember the experiences in my heart and in my head.

I want to celebrate his chance of having a wonderful life, but at this moment I am doing this with a heavy heart because I know another liver transplant is pending - and I worry - I worry about so much. I worry about him making it through the surgery and the recovery to come. I worry about my other kids how they are coping and how they will be coping.

It is a difficult feat, sitting at the edge every day and when the phone rings looking, wondering, hoping, dreading that its the hospital telling me that they have had an offer for a liver. My heart hurts reflecting on the experiences we have had already and the experience to come - whatever this may be (because we don't know). We just don't know...

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