So, Mark left this morning. I will not let the fear of being here so far away get to me. We are in the best possible place.
Tomorrow we may get the determination of the Transplant Team and yes, I mean, “team,” there are over a dozen doctors involved in this orchestration.
I look at my little boy and I admire who he is. He is only four years old, but he is so bright, he is aware of everything going on around him. I have fear for him even though I think he has none of what the future will bestow on him. He plays with his toys and asks us to change the channel to Handy Manny or Caillou, and puts in his requests for macaroni and cheese, or pizza, just like any other 4 year old.
On the inside, he is not. His doctors have called him a good actor. On the outside he is a happy little four year old, and on the inside he must have God’s hands pumping his heart for him because what they see on the echoes and MRI’S and monitors does not reflect the little boy playing on a mat on the floor of the pediatric ICU.
We have met with his transplant surgeon Dr. Lax, whom we are told patients come as far away as India and Japan to have perform these transplants. He has told us Aaron’s odds of survival, and explained to us what he must do to make this work.
If it were just a heart transplant I say that because that is how it has been told to us. It is not a normal surgery and no two could possibly be the same because his heart on the inside is only half a heart and has already been modified three times.
Where the transplant heart is going to need to be connected Aaron does not have the connections or valves. Where his lungs need to be connected he has no connection to his main artery. His IVC is interrupted - that means he does not get a good blood flow. There is not one part of his heart that is helping this come together easy, but I have so much faith; When I close my eyes I see God there with the surgeon. He has been there with us all along. He is the one that will make this whole thing come together.
We are here, so that alone is proof and Lord knows we had obstacles and I am sure there may be more. Don’t get me wrong - I have moments, a lot of them, when I am terrified and I can’t picture the day when they say okay we have the organs, we are ready, and we have to say goodbye to Aaron before surgery.
I can only do this with that blind faith that I have. We have no other option but every moment that we are together is so precious. Please cherish your moments with your children and rejoice in their health. I see moms with their children and I just long for those times when I did not have these worries.
I spend every moment thinking of the day when I don’t have to worry or listen to him breathe at night. I wish we could all be together as a family. Knowing what I know and that my boys and Mark are not with us. Oh, it just rips at my heart. When we are together I can promise it is so cherished.
I am so glad that Mark opened up and has put some of his thoughts to words. It is such a release. I think he is beginning to understand that. I lean on him a lot and he on me. We are so blessed to have each other.
I have seen him through such different eyes these past few years. We have gone through so much and we have a huge mountain ahead. I am positive that he will be by my side and we will grow old together. I just pray that all my children grow old and outlive us. I have spent many a night praying and thinking of the family that Aaron will receive the gift of organs. We have started to pray for them and I ask you to do the same. This fate will happen without any of our praying, but when we pray for Aaron’s miracle as a result we are praying for his life and for God to give him life.
The fate of the donor is happening without our prayers we just need to pray that God is with them when they are told that their Ethan passed away. We had everyone by our side at the hospital, even father Jordan somehow appeared that night at Kaiser Walnut Creek. In our lowest moment our God came to us, he came to us in our family that night and our church.
I pray that they are not alone that they have God to turn to and that He helps them up when they fall to the ground in disbelief - like we did.
I truly am so busy every moment with doctors and Aaron and trying to keep up with every detail of everything that happens with him. How much he is getting I know how much Milrinone and have they lowered it. I know how many inches his belly measured yesterday, or if his lungs always sound like that. Or the last 20 ml of fluid he had. I have to know, but why my son is covered from almost head to toe in massive scars or has so many IVs going in and out of his body that it is an orchestrated dance to get him in and out of that wagon.
I don’t know. I can’t think God chose this life for us. We have truly suffered more than most, but I do feel so blessed and so close to God with each breath that Aaron takes. I am thankful for every moment that he smiles at me or whispers “goodnight, I love you Mommy” without being prompted. I am thankful Aaron is the biggest gift that God has given me. I will cherish every day and moment because we are here and we have just started our climb.
For all of you at home reading this; thank you for keeping us in your prayers. God hears us all.
