My darling boy. I hope you can feel how much I love you. Right now your doctors and nurses don’t think it’s safe for me to touch or talk to you. You get so excited when you hear my voice that you expend valuable oxygen that your body needs to stay alive. It hurts me because I want you to know that I won’t leave your side. You need to know how much you mean to me.
Tomorrow we start the next chapter of our story. I am so sad, scared, anxious and excited all at once. We need someone to offer us their gift of life. It’s hard because I know what it’s like to see you sick and I don’t want any other mommy to ever feel this way. Someone, somewhere is going to have to make a very difficult decision to donate their baby’s heart so that you may live. There are very few people in this world who can understand how I feel about that. It’s so conflicting.
Your team here at Children’s has become our family. The other heart mamas, nurses, doctors and the rest of the team here is the only way we have made it through this. They have held my hand, hugged me, cried with me and loved us in the darkest times we’ve ever experienced. I can’t imagine going on the rest of this journey without them. You will never know how much they’ve done for you, but I can see it when they look at you, they love you.
I’m sorry that I couldn’t give you a heart that works. I hate that I can’t fix you with my love. You are so important to me and I would do anything to make you well. There are so many things I want to show you and teach you but we have to get past this chapter first.
I want you to know all the feelings that I have throughout this journey. Your daddy and I have experienced more pain and hurt than I thought was humanly possible. I have cried harder and longer than I knew I could. I have also loved harder than I’ve ever been capable of. I know our ups and downs are far from over and that we will forever be battling your broken heart but, I am in it with you. I will hold your hand and kiss your cheeks everyday. I will sit and cry with you and jump up and celebrate with you. I will be grateful when you have a toddler tantrum and cherish the mundane. I promise to be present, positive and your biggest cheerleader. There is nothing that I wouldn’t do for you.
Tomorrow we will meet our new family and start settling into our new home. It’s going to be scary and I think we are going to miss Children’s but it’s the best place for you and your heart. They say they will get you on the transplant list by the time the day is done. Then we start the longest wait of our lives.
We can do this darling Finners. I will be strong and you will be stronger. There is so much left for you to do.