I lie awake tonight in a hotel room a few hours away from home and my mind refuses to shut its self off and allow for sleep to come. I've had a hundred different memories come over me and a hundred different situations play out in my head tonight. Reflection is a powerful thing. Something I desperately wish could come to us on the front side of things rather than the back side of them. If only we could see and know what the results of our decisions would be before we make them.
I believe the single most important decision we ever made was the day we decided, or rather the day we determined, to stop living in a hospital and start living at home with Ashley Kate. As the memories flood over me I realize that I don't regret one single day we spent at home with her. It was a conscious choice we made to allow her to grow up outside the walls of a hospital room and to choose quality over quantity. I remember knowing without a doubt that enough was a enough and it was time to just give her the chance to be a little girl. I fought hard for the right to bring her home. I fought for every day outside of the walls of a hospital. I fought to give her life...a normal life...a life where she lay her head down on her own pillow, in her own bed, under the roof of her own home. Looking back, reflecting, I don't regret that choice.
I believe the single most detrimental decision we ever made was to jump on the first call we received for organs and not waiting long enough for the approval to begin the Omegaven trial in Boston. Both things were going on simultaneously in our journey and I think our judgement was clouded by the fact that we were told our time with her was going to be so short. We were given a time line of 6 more months at the most in those days and I couldn't imagine not holding my baby girl in my arms for a lifetime. So...the call for organs came before the approval to go to Boston and we chose transplant. Looking back, reflecting, I regret that choice. I regret making that choice at that time. Not to say that transplant would have never been the right choice, just to say I think perhaps had we gotten the approval to begin and try Omegaven first that we might be living a different story today. Things were so different back then. It was a brand new trial. A brand new study. If I were asked today by a parent facing similar situations I would wholeheartedly encourage them to try Omegavin first. No question about it. I truly believe pre transplant on Omegaven is an entirely different outcome than going on it post transplant with a donated liver.
Its so very hard to know what is right and what is wrong when you are watching your child lose the battle for their life. Our tiny baby gherkin was losing the battle and we didn't know what to do.
I lay awake at night searching for answers, solutions, threads of hope, wondering if there is anything we haven't yet tried or heard of or discovered that could possibly reverse the state of her dying liver. I wake every morning with tear stained cheeks because my attempts the night before were futile. I know of nothing that we can do. I know of no one who can help us. When the doctors stop calling its even worse than when your phone is ringing because they are calling. At this time no one even calls anymore to discuss her labs. No one even has suggestions or options or tests they want run. My heart breaks when I realize they have all realized that the battle is being lost and there is nothing left to fight it with.
Everyone tells me not question or doubt the decisions we have made for her. Its harder than that. It truly is. I do question and I do wonder and I do doubt.
If Ash could have kept her native liver I think our story would be so different. If Ash had more line access I know her story would be different today.
I've asked myself what changed our minds a million times. Its in the late night hours that I found the answer to that question. In remembering and reflecting on the experiences. I remember the exact moment, the exact place, the exact person we were talking to, and the exact words being said to us that caused me to stop...reverse my thinking...and lose faith in re-transplantation. In those moments I lost all faith in the process, the team, the procedure, and the chances of her survival of it all. Without the ability to trust the team and the process I lost the ability to try again. Its taken me almost 3 years to figure out, admit, and voice aloud this experience. Only to my husband and then to a close friend have I been able to admit and share this experience. December 29th, 2010 was one of the hardest discussions I've ever been a part of concerning my daughter. Only to be topped by a couple we are being forced to have currently.
I'm not so sure that it wasn't supposed to happen in this way. I mean that moment of realizing I could never take her back to transplant. I feel in my gut today, as I did on that day, that we would have more time with her without another transplant than we would if we had attempted one. It sickens me to know then and now that without it there would be a death sentence handed to our little girl. I just tried so hard to get past that awful truth and give her the very best life of quality for the very longest time I could. Knowing all along that in the end she would never grow up. I have everyday since then and do everyday still hope for more time...for the ability of her body to just hold on...for that liver to not give up on her...for her life to continue.
If I could just change the circumstances a little bit...I believe the outcome would be so very different.
Our journey with transplant is over and has ended. I know this partly because of the lack of calls, concern, and communication we now experience. It hurts so much more when the phone stops ringing.
Our journey with our sweet Ashley is not over. She continues to wake everyday and fight in true Ashley style for every breath, every moment, every experience, and every memory she can possibly pack into the life God is granting her. I'm so proud of her. So proud of who she is. She is the most amazing person I've ever known and loving her has been the best gift I was ever given.
I think its tempting and almost easy to question or judge or say that you might do this journey differently than we have. Its ok if you feel that way. I know its hard to understand. Just KNOW that every thing we have ever done or chosen for Ashley Kate has been out of our deepest desire to love her well and to provide the best life we possibly could. There are so many things that are just simply out of our control. We continue to fight for every day, for every piece of normal we can provide her, for every joy we can bestow upon her, and every smile we can share with her. She deserves nothing less than this and so much more.