Thursday, May 22, 2008
That's what the doctor told me last night. "Marie's progression up to this point has been rapid". This is something I've know, something I've ignored, something I've understood, something I've feared. To have it said out loud is something I'm not handling well.
She is fighting.... as hard as she can. Her bowels are slowly moving beyond her control, her eyes wander, her hands don't work like they should. I watch her intend to move something to her mouth, instead the arms straightens and she struggles, bird mouth open, but cannot get the object in. She is so proud when I pry open her fists and put things in her hands, you can see on her face.
There was also talk about trying a diet that has huge risks, but could help Marie a tiny bit. The catch is, she must be weaned. Breast milk is too high in carbs to be part of that diet. I can't do it. I won't do it. It's funny, I've never considered myself one of those gung ho, breastfeed or else mama's. I figure, whatever works for you and your baby is fine. I've often wished that Marie took a bottle, it would take the pressure off me. But, I cannot, I will not wean this child. By the grace of God, if she lives to be two, three, four, I hope that I still nurse her. It is is her hugest comfort, the one thing I can give her, I can't take it away.
I'm struggling with this, the rapid progression. I had found a place this week where she's doing okay, Josie's doing okay too. I'm feeling competent, stronger even, our life has gained a bit of a routine and I was enjoying that. Then the wave smashes over me, rapid progression. The reality of how brief time is, how I cannot take a single sigh for granted, it smacks me like a truck. I have to remember, the doctors see only the disease, the don't see the perfect little girl. The don't see how beautiful her spirit is, the don't KNOW Marie, not like I do. They don't know everything.
I also, never have been an "out there" Christian. I was never comfortable quoting scripture, I felt very uncomfortable pushing my faith on others. Luke told me he was proud of the evangelism that I do with my blog. Imagine that, then I realized, I do. I find a lot of comfort in it now, and I have to share it. Because it's how I'm coping, it cannot be left out of what I say.
My friend Mindy posted this on her blog yesterday, and the verse is soothing. Isaiah, Chapter 44:2 "Thus says the Lord who made you and formed you from the womb, who will help you, 'Do not fear, O Jacob My servant; and you Jeshurun who I have chosen." He made and formed Marie, he knew the struggles she would face and yet he trusted me with her. We'll get through this. Like I said the other day, I am not diggin' this roller coaster.