I don't disagree with said doctor. I'm sure she knows the way it works and how the typical emotional roller coaster rides, and truth be told I was just thinking about this earlier today. We've lost all of our house guests (not a terrible thing), I'm back at work for most of the day (also not terrible), and we are starting to work on a schedule for when and how Joy will go back to work. We are planning all of this while our baby girl is being taken care of by other people in the hospital. It's going to get harder from here.
Best case scenario, a month or two from now Maggie starts to breathe on her own, she feeds well, she is able to control her body temperature, her heart begins to work more efficiently, she is able to control the secretions of mucus in her nose and throat so she isn't choking on it, and we get to take her home. That's the best case scenario, but we would still be bringing home a physically and mentally disabled girl with a colostomy and a list of probable surgeries that will have to take place in the next year to two years. We all know the worst case scenario, but the more probable scenario is this: if she she is physically unable to breathe on her own she will have to have a tracheotomy in addition to all of the other issues. The complexity of this issue is lost in translation. She would still have to be tethered to a respirator at all times. It's going to get harder from here.
I'm really starting to struggle with this emotionally. Folks ask me all the time "how are you doing?" and I simply say I'm tired. It's true, but I really don't have the time or energy to be completely honest. So, if you're wondering how I'm doing here it is. The real deal.
I don't feel like a dad. I come to the hospital and look at a baby for hours every day (which isn't long enough and I feel guilty about, but that's a totally different issue), staring at her, trying to calm her when she is restless, watching nurses and doctors poke and prod her, but she doesn't feel like my daughter. I'm sure this sounds heartless and absent minded (which I feel guilty about and is a totally different issue) but it almost seems like I'm visiting a friend's baby.
Anytime someone asks how I'm doing I tell them I'm exhausted. Without even thinking about it I begin nearly every prayer with, "God, I'm tired." I know exhaustion is part of being a parent, but it's a little harder to accept it when you don't have the "aw, look how cute she is!" moments.
I still haven't looked into her eyes, I haven't heard her cry, and I have nothing to give her that is helpful. So I stay more hours (to try to avoid the guilt, which is a totally different issue) just with the hopes that some day she will be old enough and have the mental capability to understand when I tell her how much I loved her from the beginning. How I sat by her bed and wrote about her, how I sang to her for hours even though my once-talented voice is long gone, how I quizzed each doctor and nurse about every detail, and how I called her nurses every night before bed and first thing in the morning because I couldn't be at her bedside at those moments.
Alarms ring out from her ventilator and her heart monitor regularly while we are in her room, and each time I hear one my throat feels like it's going to close up and I begin to wonder if this is "it". I'm afraid to lose her, wondering what it would do to me, my faith, Joy and her faith, but I'm afraid for her to make it at the same time. I am battling something inside of me that wants to curse medical science all together. Is it right that we are keeping her alive? Are we shirking God's plans when we take things into our own hands like this?
I'm scared, I'm tired and I feel ill-prepared for whatever it is God has in store for Maggie, Joy and me. I want to be positive and say uplifting things, but just as I said in my original introduction I am committed to honesty, and right now I am not all that positive. When I'm upset with God, I tell him. I only sing songs of praise when I mean them, and when I'm scared about the life He has planned for me I will talk about it, because I have learned something amazing in the last five months. God does not leave me hanging. He doesn't fail. He allows us to hurt, but he doesn't cause it. Having said this, I want all of you to watch Him do His work. It is certain that I will fail as a person, but He will not fail me.
Here is my prayer:
God, we are simple people with simple needs and complex desires. Please take the nonsense out of my brain and off of my heart. Keep satan far from me and send the Holy Spirit to guide me. I know you will provide for me what it is I need so I can do your will each day. Please teach my heart to be content and let your provision be enough.
Please take away my ability to think long term. I know in my brain that the future is not real yet, but it worries me. Please eliminate the stress caused by thinking about days you have not even created yet.
Father, please send your Son back to us soon. I want to go home to you with my whole family. Amen.