Darkness

Sitting in a hospital room all day is just not fun. Maggie requires darkness when she sleeps and darkness when she eats. Since she is a good napper and her feeding sessions last 30 minutes each it's pretty much a dark cave in here all day long. I have some borrowed books from
a friend and I guess I could be doing lunges across the room for some exercise, but I just can't muster up the energy to do anything. Those who know me know I can't take naps so I sit around most of the day browsing my iPhone or watching the news on mute. Shouldn't I be using this time to do something productive or learn something new? I'm rather disgusted with my apathy. All I can think about is how I want Maggie to eat so we can go home.

As for Maggie...the Ng tube is in and it has made her more congested unfortunately. So now that breathing is harder for her (because of tube blocking one nostril and the other nostril clogged up) her eating has gotten worse. You know it's going to be a bad eating day when she won't even put the bottle in her mouth at 8am, which is what she did this morning. It's just a seemingly vicious cycle of setbacks and frustrations.

The therapist said it might take a while before she gets back to where she was. This, of course, made me want to scream. I know she will eventually get better but I just don't have "a while," I wanted to say. I have one day and then I am going to just meltdown and someone is going to have to peel me off the floor and take me to probably the only other hospital one of our family members hadn't been to in the past six months!

Okay, I know that's the wrong attitude but this is how I feel about 70% of the time. Sometimes I wonder if the reason there are so many children in this hospital that never have a family member with them is because it's just too hard for the parents to watch their child struggle and suffer and feel so helpless and useless? As one nurse put it, "some parents take this time as a vacation from caring for their sick child." It's rather disgusting that any parent would do that, but you know what, how can I judge? I have no earthly idea what another parent has been through or is facing. Maggie probably has the most minor problems in this hospital and I can barely make it through each day. I have 100% conviction that couldn't make it through each day if I didn't have the the hope and the strength that comes from knowing Jesus. I wonder all of the time how other parents are coping, if at all...

I guess today is a day where the indefinites ( "a while," "soon," "most likely," "probably") are just too much for me. I need a date, a time, a goal to be met- something that will tell me that we will someday have some normalcy or calmess or ease in our lives.

Okay sorry for the rambling, back to watching talking heads report the same "breaking news" stories every 15 minutes...

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