Retrospect.....One year Later...

(12/27).....and I am standing in front of the mirror looking at this scar and in awe of what I have done, what we have done, what they have done.  Maybe that is how some people feel about their tattoo they just got, but this scar is a reminder of where we were. I can barely breath at the thought of how scared to death I was walking down the hallway in a johnny about to be put to sleep and be cut open. I remember not wanting to talk anymore, 2 days before Dr. Akoud took me to the side and said we can postpone this, I was sick, I think mostly nerves, but I said No! I needed this over, I needed to be on the other side of it, no more talking, just please everyone stop talking!!  No one can ever really tell you how you feel about it on the day of or the day later, a month later, 6 months later or a year later. I ran through this a year ago with humor and never allowed my self to really acknowledge the fear at least not then and than I thought not ever. I remember thinking how could I say I was afraid or admit anything, my father would feel horrible and not let go through with it.  Knowing all I know now, I do not regret any of it, but to lie and say that I was not scared out of mind, that if in the 11th hour someone said there was another way, well just maybe I would not have done it. I never slept the night before, thank goodness for my journal and the hot bath.  I remember still, the last face I saw was my son, the best face I saw when I came through was his, that was truly a fear I never shared, not then and not until now. He  amazes me, but that's another blog.  I have been told I am courageous, well I learned that it is fear that makes you courageous. The only way out is through and I went head on. While I was afraid for myself I was more afraid of the possibility that I would lose my father trumped anything else.
The recovery process I chronicled with the greatest of humor, because the physical part of it was pretty matter fact and funny. I did have some of the greatest and funniest moments of my life with my father. We found humor in every single thing we could, from midnight protein drinks, sharing pain med incoherent speak, nodding off mid sentence to the gross bandage changes.  The stories between us are endless.  What he and I share is pretty difficult to describe, but gratefully on this journey I have met many more Live Donor's that just get it too, and the Daddy's Girl cliche has taken on a whole new meaning for those of us that donated to our Dad's. I hope to one day collect all the stories and write the book, because if you thought my stories were funny imagine 100's more. 

Recovery has it's tough moments for the care givers and I can not speak for them. I will say they need all the support in the world from everyone else and I do not wish to belittle their role in any way. However the recovery process in some families can create difficult or misunderstood intentions. What should bind some can also divide, as I have also learned. I have had to learn that I can not hold on to what others are not capable of, even if the simplest of courtesy like "how are you" is not with in them to ask.  I make no apologies for how I was during my recovery as I was working on pure instinct of survival for myself and protectiveness of my father. It is difficult to explain to someone that was not cut open and did not walk this fine line, ultimately every step you take as a donor and also as the recipient is alone. When you both come through, donor and recipient there is a bond that has now  just become a knowing, especially cause you have the same aches and pains.  I was accused of being over bearing with my father's recovery, we did recover in the same house. In retrospect I can definitely see how this was misunderstood.
 The best way I can explain what was perceived as over bearing is like this.... First I am a mother, I carried a child, I felt him grow inside of me and gave birth to a child. It was 20 years ago but you never forget it, not a second of it. From the moment you bring your child into the world that Mama Bear instinct kicks in, all you know is how to nurture, protect and you would give your own life for the very health of your child.  Now imagine getting your self cut open and a living piece of you is removed and put into someone else, it truly does not matter who that person is that it is put into, for me it was my Father.  Well those same Mama Bear instincts apply, so when anyone went near him I was overly observant I didn't care who it was. I found annoyance when they treated him like he was weak child and I often find that it still annoys when people still treat him that way. So was I over bearing, yup, but again I make no apologies because I did what I truly believed was right. From time to time I am still over protective of him, so unless you have actually experienced  something like this I guess you can only imagine.
People are funny, they talk a great talk about what they would have done but the truth is the truth, it is never what would you have done, it was what did you do?  They love to tell your story like they had some big hand it, makes me laugh too. This is not a story of Hero's, it is about simply paying it forward, doing what you would want done for you. I am not a Hero, I am simply a girl that loves her Dad and was not ready to say good by and was given a option. Since I have always been known to take risks, that is exactly what I did. People come together for a crisis, because they want to know or be in the know, but once crisis is averted it is business as usual. The recipient for a while will get treated like they are fragile and going to break, kinda  like when people talk loud to an old person because they assume they can't hear you, totally annoying!  My Dad,  still gets a lot of that "fragile" look and talk, I get quite aggravated about it myself. His liver is perfect people!!! Me, hell people stopped asking how I was a month after the surgery, ummm Hello, I did not have a tooth pulled people, but whatever really, like I said people are funny.   For us, the core of us and that is Myself, Dad and my Stepmother we live this, breath this and try in every way to be perhaps "normal" like we used to be, but we never will be. We are no worse for the wear, we are closer, there is fractures beneath the surface, but they are ours and they are to be expected.  Truth is I definitely needed some where else to talk about what I was feeling after all this, because once the physical recovery was over me, it just seemed like it was never ending for my father. I felt every emotion there was, like not good enough, especially when he was so sick, I felt like after all I had been through it was not enough for him. There were moments I could not even take care of myself and  to ask for help was just not in my genetic make-up. Somewhere in this I definitely have to say being a woman I was hormonally challenged, one minute I could cry like a 4 year old the next I wanted to punch someone in the throat. People just did not get it, no one understood how alone I was in this. I had no one left to turn to that truly understood this journey. People mean well, but truthfully no one really gets it until you have walked the line between wanting to do the right thing and sacrificing a piece of yourself. Yourself, not meaning your organ, your self, because this, this will make you question all you are, you ever were and this will now define you.  Anything you say people that don't understand this can and will take out  out of  context and then it turns into words you did not say. I have learned that you can write it or speak it and if you say one thing that sounds like you "regret" anything o boy what shit storm you can create. Honestly I stopped talking, I literally shut down and shut people out, I am pretty good at that too. I had to, while everything I did was rooted in Love, I did this for no one else truly but for my father and for myself, I just did not know how to explain what I was feeling anymore or who the hell I was suppose to be now.  Looking back, there still is no doubt I would do this again, there is no but's it just is.  I got lost in this, all of this, while  I like to wander, being lost was not a good place.  So I came back to what I knew, I started writing and found others donors like me, that I could share these highs and lows with.  I came back to this blog, it was just something I did in the beginning to get out  what was going on but never did I realize how it would heal me and others. This took on a life of it's own, I received so many emails from people thanking me for it, which reading their thanks made me know that this was why I did this. Paying it forward is not about just helping one person it is the ripple effect. I met people that truly amaze me, some stories trump mine. I am now a Volunteer for Donate Life New England and I continue to tell my story when I am asked.  Thanks to Amy Tippins of ROCKSCAR LOVE Designs I have embraced my scar more than I did this past summer when I was in a loathing it mode. I came to learn I was not alone in that department, as a woman it takes a bit of getting used to. I belong to a Live Liver Donor page on Facebook, I put up my  scar picture and created a Scar picture frenzy, it was really cool. On this page we share all of our joys, triumphs, sorrows, hysterical hospital stories and it has  become a place that truly makes feel like it was ok to have all these thoughts I do and did. The whole process was a bitch, the pain sucked, the recovery is  hard, this is not a cake walk, this is not for the meek.  Dad says he thought I handled my recovery and pain like a Bull, haha, maybe but the drugs were good too. I said from the beginning this could break you if you were not a strong person at your core and that still is the truth.  I had moments that I truly felt I would break, I cant tell you exactly for what or why, but man there were moments.  The bottom line, would I do it again? In a heartbeat, in the same way..at 900 miles an hour  I regret nothing............my DADDY IS ALIVE..and as long as WE have life and breath in us OUR journey will continue.........


(this took me over 2 months from our one year LivA-versary date to write....I was far to over whelmed  but feel this is right...)
Special Thanks to
Amy Tippins
Michele Muligan
The Fles Family
Kelly Kleinschmidt
Christy & Jessika Thompson
Ashley & Martha Hunt
Erika Blumberg
Victoria Dadi
Hampson Family
Sandi Williamson
Tricia Cushing
Kortni & Kelly Gehri
These are just some of the awe inspiring human beings I have met on this journey, I know their stories as well as I know my own, and each one of them is a testament to Paying it forward....Thank you Ladies and Gents for sharing your stories and being apart of mine....

Scars.............(pg 32)

10/29/2011

I just found this song and for those of that have been walking this incredibly challenging journey over the past year, this song hits home. Click the link...when words fail music speaks..........
Scar Anna Nalick

I have had the pleasure of making some great friendships on this journey and it is with heavy heart that I tell you that this year two amazing souls lost the battle with their disease. With the greatest of courage, strength and love Tricia Cushing of Ct. and Founder of Star Fish Strong had to let go and say "see you later"  to her life partner Michael J. Parillo (October 23, 1954 - July 16, 2011) Michael lived every moment with the same zest as anyone with out liver disease, Tricia started  Star Fish Strong for Michael and for others battling liver cancer or any type of liver disease, Michael was active in the foundation as well. As with any prideful man Michael did not give up until his body could no longer hold his spirit, and he was not alone when he crossed over and I am quite sure he is with Tricia everyday in spirit pushing her to keep on going as if he were still here.
Michele Mulligan one of the very first to reach out to me in the very beginning of this journey, when I was asking questions on the Facebook page of American Liver Foundation, her life partner, love of her life Darian fought the same disease as my father, however Darian's disease progressed rapidly and Darian crossed this past summer. She is a still with Michele in Spirit and we know this with out a single doubt. Michele has become very special to me, mostly because she truly understood the disease my father had and the struggle to get back to health. I could write an entire blog on how special Michele and Darian are to me, but sometimes there are not enough words to explain,  Michele would agree that  there is just a beautiful knowing between us.
This blog has brought many emails and friends thanking me for my candor and the humor, and it is not with out appreciation for the thanks but I do not feel that I have done anything extraordinary, other than liking to write, rant or babble.  What I am truly grateful for is the people that I have met along the way and made lasting friendships with, although none of us have  physically met there is no doubt that our friendships will continue to grow. I have come to believe in law of attraction more so than ever, the friends I have made through out this journey aside from our common bond are people I would have befriended anyway. Michele, Tricia, Amy Tippin (the proprietress of ROCK SCAR LOVE) Christy & Jessika Thompson, Kelly Thorman-Kleinschmidt, Jennifer Bryant, Broghann Fles these are all strong, vibrant, funny, courageous woman that make you stop and take notice. These are the people that I am honored to call friend along with so many others, these are just a few of the many amazing human beings I am have met along the way.  Anyway I am babbling again...but take a listen to the song it truly hits home....and do not for get to check out ROCK SCAR LOVE............(yes I am plugging,lol)