Sometimes, Often times, Almost every time, while I’m rocking you, I look down into your peaceful, happy, sleeping face and I say “I’m Sorry”. I’m sorry that this happened to you. I’m sorry that the ‘problem’ is from the chromosome that you got from me. I know it isn’t my fault. I couldn’t have known. It is most likely a random mutation. But you got that mutation from my chromosome and I’m sorry. I’m sorry that I can’t fix it. I’m sorry that sometimes when you cry, I don’t know if you are hurt or sad or hungry. I’m sorry that I don’t know how to comfort you. I’m sorry that your life isn’t going to be easy. I’m sorry that there are going to be people, ignorant people, who don’t love you because you are different; because they don’t understand; because they don’t know how to get to know you. I’m sorry that your life options are a toss up of two not so fun things. I know that life for you after transplant won’t be a cake walk. I know that there are a lot of dangers ahead of us. But I think that taking on those dangers are much safer than the dangers that face you now.
Sometimes, Often times, Every time, that I look at you, I pray for you. I pray for me. I pray that God will grant us one more miracle. That despite the damage to your brain, that you will show no manifestations of it as you grow up. I pray that God will help my unbelief. Because I pray for something that the logical side of me, the scientist in me, wants to argue as impossible. But, my sweet little boy, your being home with me right now, smiling at me as I type, once seemed impossible. We serve an amazing God who preserved you through an avalanche of medical problems. When I pray, I thank God, with flowing tears, that He saw fit to answer my prayer “Please don’t take my baby from me.” I thank Him for the moment that we are in. I thank him that you came home. That your sisters have gotten to see you, to hold you, to love you and spoil you and dote over you. I thank Him that they are your little body guards. That they don’t see anything wrong when they look at you. That you are perfect to them too. I thank God for the doctors and nurses who fought for you, who continue to fight for you.
I pray for patience and peace because I am tired and confused. You are exhausting. The feedings. The diaper changes. The wanting to be held constantly. The not liking certain positions because your feeding tube irritates you. Not being able to just lie you on the bed and walk away because I’m afraid to let you cry. Afraid that it will mess with your ammonia levels. Afraid that it will make you throw up. Your needs, that I want nothing more than to meet to your highest level of satisfaction, always seem to overlap with the needs of your sisters. How do I hold you while you eat in one room and reading stories to your sisters before putting them down for naps in the other room? When, exactly, am I supposed to give you a bath? I want to trust God that this is all for a reason. I want to trust God that this is all for my good, for your good, for the good of someone out there. And I do. But sometimes. Sometimes I have to ask why. Sometimes I question where the good is. When will we see the fruit of this? Will we ever? And you know what, my sweet boy, we may not. And that is okay. Because when all the fears and anxiety get to me, I know that you and I can sit in the rocking chair and read the Bible together and God will comfort me. He tells me over and over that we are His children and He has us in His hands. We have nothing to worry about and nothing to question. God has a plan. A perfect plan.
And I wonder. I wonder if you will grow up to have the personality that I imagined you would have when you were in my belly. I wonder if you will grow up. I wonder if there is a girl out there who is going to love you for who you are. I wonder if you will walk or talk. I wonder if you will see the beautiful world around you. I wonder if you are going to be angry and frustrated, unable to articulate your thoughts or control your movements. I wonder what you will think when you look back at the path you’ve had to walk. Will you be thankful? Will you be angry with us? Will you question God? I pray that you grow up firm in your love and trust of God.
I hope that in the end, you know that we are all imperfect people. Mommy and Daddy did the best that they could. We did what we thought God wanted us to do. We continue to do what we think God wants us to do. That is all that we can do. That is all that you can do. Remember, God has already won the war, you just have to show up for the battle and sit back to watch him fight for you. You are His son. He will always fight for you.