The main purpose of this blog is for Addie to be able to look back over her journey when she is a teenager, a young adult, a mom, or an old lady and be proud of how hard she fought and how far she has come. I want her to be able to feel the emotion of her journey because at 5 years old, she can't understand how brave she is! I pray that she never takes her gift for granted. There are some really happy and exciting parts of her journey. And there are some really sad and scary parts. What I'm writing about in this post is the sad stuff. I've debated whether this is appropriate and whether some day Addie will appreciate my words and my feelings. And the truth of the matter is, this is part of her life. There was another family affected by Addie's transplant as much as or more than our family. And I want Addie to appreciate that some day. I pray that she honors her gift and always continues to fight as hard as she can to protect her gift for the rest of her long and healthy life!!
Over the past several weeks, I've spent a lot of time thinking about the other family that was greatly affected by this phone call too. Because see, when we got this phone call from Pittsburgh at 1:46 in the morning - it meant that a family was sitting with their child and trying to prepare themselves to say good bye. They were going to have to watch as he took his last breath and no longer have the ability to hear him laugh or watch him grow up. This breaks my heart.
Without sharing too many details - Addie's liver came from a little boy in Philadelphia. He didn't suffer, he wasn't sick, he didn't have time to hug his momma and say goodbye to her. He was there one minute and gone the next. This is one of those things about life that I just don't understand. A child. A little person who barely had a chance to live his life.
I can't understand what the other family and especially the other mother was feeling that morning. I can't relate to her and I can't even pretend to try. As mom's, our natural reaction is to protect our kids from feeling an ounce of pain and to hold on them until the pain is gone. I wanted to do that with Addie in the moments after this phone call - and I imagine that his momma was feeling the same way about her son. The day of Addie's transplant, the OR time kept getting pushed back. The first OR time we were given was 2:00 in the afternoon. It was pushed back to 6:00 in the evening and even further till 10:00 in the evening till they finally took her at 2:30 in the morning. I don't know details of why the surgery kept getting pushed back. I know the placement process of organs is a big deal and takes a lot of coordinating and matching between the donor's hospital and the recipient's hospital. And if the donor is healthy enough, they can use all of their organs and place them with people waiting for a better life. So this process could have certainly played a part in the delay of Addie's surgery. But I also know that Gift of Life can't begin the procurement process until the family is ready. How in the world can a momma ever be ready for what comes next for her dying child. So as we waited, I kept reminding myself that it was not in vein. Our wait was nothing compared to what this other family was facing.
I can clearly remember at one point, during our wait, Dr. Kyle - who was flying to get Addie's new liver came in to see how we were. I started expressing my concerns about the little guy in Philadelphia and what his family was going through. And Dr Kyle, by no means, was trying to be heartless- but reminded me that our focus needed to be on Addie. In a few hours, she was going to walk through the toughest journey of her life and she needed us to stay positive and to be supportive. Sadly, our worries or concerns weren't going to change the situation in Philadelphia and it would do our family no good. It was good advice. And I turned that worry off for the moment.
But now, as I've watched my child run around the yard and play with her sister and pick up sticks with her daddy and dig in the garden with me - I can't turn that sadness off. Don't get me wrong, I'm grateful for the gift that his family gave us. But I can't imagine what the other family is going through. I can't imagine how hard life is to move forward without your child. I can't imagine the pain that they must feel on a daily basis.
How do I ever express the gratitude in my heart to a family that has experienced so much loss? Is saying THANK YOU enough? Because the truth is, if all aspects of life were completely our choice - I doubt that this family wouldn't have chosen death so my little girl could have life. But because of the choice that they were forced to make - they have given my Addie things that no one else has ever been able to give her. And for that choice, I say thank you. You have given Addie a life that I never imagined was possible. Your gift has given Addie the ability to play outside and not be falling all over the yard because she has terrible coordination from fluctuating ammonia and high ASA levels. Your gift has given her the ability to think clearly and wake up in the morning without a fog over her brain. Your gift has given my child cognitive skills so she can play and think and create like she's never been able to do before. Your gift has given her the ability to eat whatever she wants - whenever she wants. Your gift has given us the ability to have a conversation with Addie without her needing to stop and collect her thoughts in order to form a sentence. Your gift has given truly my child a better life. I am humbled and thankful. My promise is that I will protect and honor this gift and the piece of your son that is still alive in Addie the best way that I can - every day of my life!
