Wednesday, October 3, 2012

Being Real

I get several devotional emails each day.  This is one of them from this morning: 

today's verse from the New Living Translation

"Then Andrew brought Simon to meet Jesus. Looking intently at Simon, Jesus said, 'Your name is Simon, son of John—but you will be called Cephas' (which means 'Peter')."
John 1:42
view in context

encouragement for today

Jesus looked at Simon and saw not only who he was then—"You are Simon, son of John"—but who he would be: Cephas—Peter—the rock upon which Jesus would build his church. Jesus looks at you and clearly sees not only who you are now, but who you will become in him. He himself calls that forth in you.
—Diane Eble, author of Abundant Gifts: A Daybook of Grace-Filled Devotions

When I read this it sparked my attention and I moved it to the folder where I save the devotions that I think will come in handy later.  Well, later came sooner than I thought.

For the last month (literally), I have spent everyday at the hospital in the NICU.  This is not something that I would have ever imagined for myself, but right now I can't imagine anything else.  We are so blessed to be where we are.  The staff at Greenville Hospital are top notch and are taking excellent care of us.  That, however, doesn't make a month long hospital stay any easier.

Some days Brinkley seems to be super baby and he makes huge leaps towards coming home.  Other days it seems like he is in a rut and we are never coming home.  I have tried my best to take the good and the bad in stride, but the last couple of days have been really hard.  I have been so frustrated and I just want to go hide in a corner and cry.   It has been really hard to keep it together.

I know that our situation is nothing like most of the families around us in NICU.  Brinkley has never been struggling for his life or facing many of the challenges that so many of the babies are dealing with.  My heart breaks for those families and I am sure that they would gladly trade places with me.  Knowing that, I can't help but feel selfish for feeling the way that I do.

It is such a helpless feeling to have my baby lying in that bed connected to the monitors and not be able to bring him home.  I can't even freely walk around with him, not around the room, not down the hall, not even to the nurses station when I have a question or need help with something.  It's hard to even feel like his mother when I don't really have any control over most of what happens to him.  I didn't choose his formula.  I didn't choose his feeding schedule.  I didn't choose his brand of diapers or wipes.  Most days I don't even get to choose his clothes.  It almost feels like I go in that room each day to simply babysit for the nurses.

Right now we are waiting on him to be able to take all eight of his daily feedings by mouth before we can bring him home.  He had been taking two bottles a day and the other six feedings through a feeding tube.  This weekend he did so well with the two that we were able to move up to three.  He didn't do really well the first night with the extra one, but our nurses assured me that he would get it within a day or so.  I held back the tears and trusted them.  Yesterday his amount of formula was increased, today's feedings were even worse.  Not only is he not finishing the third bottle, he isn't finishing the other two either because of the volume increase.

I was so sure that he would be coming home this time two weeks ago.  The goal of the doctors is to get him home by his due date, but that is a little less than two weeks away and I am not sure how realistic that is at this point.  My heart is breaking as I want my baby home, but also I want to stop the madness of trying to juggle life at home and life at the NICU.  I am so emotionally and physically drained when I get home that I am no good for anyone (especially not for taking care of my house).

In the midst of my frustration I have thought about that devotion all day.  I have to keep reminding myself, that just like Jesus knew what was going to happen with Peter, he knows what is going to happen with Brinkley too.  No, I may not have any control over who or what he will become, but He does.  One day I will look at my sweet Brinkley and the difference that he has made in his world and know exactly why we are on this unexpected journey.   

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