Monday, November 26, 2012


Being at home as much as I am, and alone, I have a lot of time to think. This can be a good thing and a bad thing. When I have time to be in my 'studio' I keep the music playing just to drown out my thoughts.

Last week Wednesday afternoon I was sitting with a new doctor, a hypertension and nephrology doctor. My blood pressure has been high and my kidneys are working at about 50% of what they were before my transplant. So my current standing is this, diabetic, hypertensive, high cholesterol, kidney issues, and bone density which has decreased instead of increased as hoped. So never having met this doctor and he not having read my chart AT ALL, before coming in he was surprised to hear my whole story in about three minutes. What I walked away with other than three new prescriptions is that my life before the ventilator has become a blur. I am not sure if that is because that life no longer effects this one because I don't have those lungs or what. Every time he asked a question it was, 'I think before the vent' or 'maybe it was on the vent', I just don't know. Call it PTSD or just plain forgetfulness but how does one whose life consisted of such turmoil day in and day out forget so much?

I spend many days going between two thoughts, time on the vent and my new daily life.

Having been on the vent is such a long time ago it has been over a year since my transplant. I however can put myself back in that room in a heart beat if I let my mind. I have moments in time that I remember. I have memories of my aunt being outside my window across the street waving, that was priceless and also one of my best memories. I remember my grandma's last visit, and sadly her funeral via internet from my room as my brother set up so I could watch it as it happened. I remember when the panic would set in every afternoon toward, the end, as my mom would wash my hair, suddenly I felt like I couldn't breathe. The fear of having a machine breathing and being in control is scary. I remember the night RT Ashley sat at my bed side while I fought with the vent, feeling it wasn't in sync with me.

I remember the night before my transplant when the article came out in the paper, for the first time in months I felt calm and didn't go to sleep wondering when it would come. Chris and I had finished Seven Brides for Seven Brothers, Mark was my RT, and Nicole was my nurse. Thanks to my pastors for bringing me to a point of contentment too, I was ready to leave this earth if that was the plan, I was tired of struggling, tired of waking up at six every morning to the same routine, and hating every suction and every beating and every vest time. The best part about RT was the therapists, not all mind you but the good ones know who they are. The lack of control in everything was the worst, when you are always in control it is a nightmare to let go.

Skip forward 12 months. This past week being Thanksgiving and all about being thankful, I was blessed to spend the time with all my family this year. First meal back at my mother-in-laws house since Spring of 2011. This Thanksgiving my siblings and their children all came for Thanksgiving and I got to spend every day with them. I even had my brother, sis-in-law and the two nieces over for lunch and we got to do some artwork together. As I was moving about that day and up and down stairs I couldn't help but think how great this was and how lucky I was to have these days with all of them. I sometimes stop and wonder what would be going on if I hadn't made it. It doesn't plague me, but I do wonder. I also know that someday that will be the case, but I will cherish these moments. I will cherish the things like Kai saying the word 'her' instead of 'she', or the way he crinkles his face. I will cherish the way Josie always finds a way to be close, even as she gets older she isn't afraid of laps or hugs, or any form of affection. How Grae sits and reads a book so big I would have cried at her age if someone gave me it, but she loves it. The girls laughing together is like music. And Cooper the one who didn't get to stay, that boy has so much love in him and he is so sweet.

Each moment is priceless, and my family means the absolute world to me. I would be nothing without them, they have been through hell and back with me.

So maybe there I days I think too much, but I maybe that is a good thing. I get to chance to relive the worst part of my life but followed by the best part of my life. It may not be perfect but being able to have one more day is better than anything.

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