I spent some time yesterday afternoon standing next to Julia's crib holding her. She, like many babies, likes it when I stand to hold her verses sit. I'm sure she likes the swaying, rocking, and bouncing movements that I do when I stand. As I was holding her she was captivated by the TV screen. The nurse must have turned it on. It was on the hospital's nature scene channel. I found myself watching with her all these images of mountains, forests, rivers, birds, and whatever else. I started getting sad thinking about her life and all that I want for her. This is NOT what I want for her life- a life of illness and stuck in a hospital. I want her to be home with her family and held all day. I want her to be a part of our daily life. Not visited. She may come home soon, but she still is going to be hooked up to stupid wires that will get in the way of being able to carry her around anywhere or put her in my ergo baby carrier. I don't want to have to worry about a tube coming out of her intestine when I hold my own baby! I want her to experience and enjoy her world. I want her to feel the ocean on her toes, the snow on her nose, the wind in her face. I want her to see the forests and hear the birds. I want to see her smile and hear her laugh. Right now, her being sick seems endless and I am tired and weary of it for her. I don't want my daughter to be sick! It just isn't fair! I know that she may recover and go on to do all that I just described. But she also may not recover. It is out of my control and I don't like that at all. I was talking to a team of 3 doctors yesterday who had come in to touch base with me about Julia. We were discussing her heart and one of them said, "You know, as doctors we try to control all sorts of variables. But in the end it is really up to Julia and her body and what it does. Julia calls the shots. We don't have as much control as we'd like to think we do." I agreed and replied that that was every parent's first hard lesson. We don't have control over our kids- from conception. We can parent them. But ultimately they are who they are. They are created with personality, strengths, and weaknesses. Julia was born with quite a few things against her, medically speaking. She has Down syndrome, which has a whole array of medical challenges, she has a heart defect, and possibly a completely separate heart issue. But I believe she was also born a fighter. She's got red hair, which makes her feistier than the average baby. (haha!) She had been kicking me and making herself known since I was 15 weeks pregnant. She has already overcome a lot. But I don't want her to have so much to overcome. She shouldn't have to work so hard just to eat or BREATHE! It is not fair. It is not fair for her or for our family. Mattie should not have to be dealing with a sister who is sick and in the hospital. She should be able to have a healthy baby sister at home like most people. And all of this is completely out of my control. So that is where the rubber meets the road with my faith. Can I trust God through this? Can I trust that God is in control even when I am not? Foundationally, I do trust God with all these things. But emotionally, I waver. I am sad and disappointed and mad. And those feelings are also out of my control. The grief process sucks. It is hard. So today I'll put one foot in front of the other. I will hug Mattie and get her to school. I will go and love Julia the best I can at the hospital and then go home. I will get up the next day and do it again. I will try to hope.
Romans 5:1-5
1 Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, 2 through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. 3 Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope. 5 And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.
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