How can I possibly keep up with all of the important details of our lives? How do I know what is important? What do you want to read about? What do I want to write about? How come I feel badly when I haven't blogged in weeks?
This evening's struggle is about intervention. I've always considered myself a low-intervention sort of person. I believe in birth with little or no intervention when possible. Wearing makeup means Burts Bees chapstick, I drive an older vehicle, believe that wooden spoons and car keys are adequate toys for a baby. So how do I find myself in a place where I call a doctor every time River looks, moves, cries, breathes, eats differently than what we are used to? If there is a test that might improve his comfort or development I schedule it. A medicine that might improve his quality of life, I want it prescribed. I fight for the latest therapies and equipment. His medications number 9 or more, his doctors and therapists plentiful. How did I end up here?
This struggle has to do with his apnea... and what we can do, or should do as his parents. As the people who love him most, who want so much for him, yet also need out sanity. So does it make sense to have him hooked to a monitor which beeps loudly each time his oxygen levels drop? To which we jump out of bed to make sure that he is okay (which he is)? How about a huge oxygen concentrator which can be heard throughout the entire house? Not to forget his feeding tube which feeds him continuously throughout the night, and may need to be unhooked periodically to relieve the gas in his belly. Nothing about this feels normal.
How do I balance my desire for River to be well, with our needs for a decent night's sleep, with River's needs for some level of normalcy?
2 comments:
Does the monitor have a second unit that can beep somewhere else in the house? Does it wake him everytime it goes off? And he had to be fed all night as well...I'm totally clueless as to how much nutrition he needs, I take it it's close to 24/7?
my heart breaks for you, hannah, and all these challenges you and your family face on a daily basis. from reading through your blog, i am in awe that you remain that beautiful, beautiful soul that i admire so much. i can see that you are worlds beyond "tired" (what a watered-down word for what you must feel all the time) but you are still you. river is such a blessed child to have you to raise him.
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