Mito/Neurology Day
Have you ever been awakened by a team of butterflies pitching your stomach from side to side and using your lungs as bases and your heart as home plate? Really? You haven't? That's what I woke up to at 4 this morning and they still aren't even to the second inning!
I was up until 2am just trying to get my homework done that Dr. Shimamura gave me to do yesterday. I still have a little more which I will finish up this morning.
I lay here wondering how in the world I ended up at this point in my life. All I wanted was a quiet, little life in the country, a picket fence, laundry drying on the line, floating through the gentle breeze, my husband and I, his arm around me, sipping lemonade on the covered porch watching the kids run playfully through the clover. (I don't know where that clover came from...it sounded idyllic, whatever, you get the picture.)
You'll notice that mitochondrial, neurological and bone marrow failure problems were not mentioned in my little fantasy life but that's what I got. A little townhome in podunk America that sits between the noisy highway and a field of weeds. The laundry is still stacked up, one kid with a fever, the other getting chemo and the third stuck in the bathroom because they just ate a hamburger and their pancreas is angry now. I don't have time to gulp down water let alone sip lemonade. I have a WASband, not a husband. Hmmmm, that little life of mine is extended to this big city of Seattle and I am starting to feel like I should change my name to Dorothy.
This is not 'Kansas' anymore, it's not my perfect, imaginary life but it isn't the life I'm use to either. I feel very nervous and unprepared for the appointments today. It's all so foreign. I have taught myself so much about the blood and bone marrow, that stuff makes sense to me but mito is all so new, so scary...the word itself freaks me out.
I am pretty sure one of two things will happen today...they will say, "Nope, this is nothing close to Mitochondrial disease, thanks for coming." or they will say, "Wow, these kids have some significant muscle, nerve and mitochondrial problems going on. Here, give them the Mito cocktail...it only costs a few hundred dollars a month per child and your insurance won't cover a penny of it. It won't cure them, there is no cure but it may slow the rate at which the mitochondria in cells crumbles apart. Have a nice day, we will see you again soon."....Maybe it will be some version of these scenarios.
I'm not sure how I will handle the news either way...I guess in just a few short hours, I will know. The best I can hope for is that it will be clear to me that God's plan is underway....not under revision.
I was up until 2am just trying to get my homework done that Dr. Shimamura gave me to do yesterday. I still have a little more which I will finish up this morning.
I lay here wondering how in the world I ended up at this point in my life. All I wanted was a quiet, little life in the country, a picket fence, laundry drying on the line, floating through the gentle breeze, my husband and I, his arm around me, sipping lemonade on the covered porch watching the kids run playfully through the clover. (I don't know where that clover came from...it sounded idyllic, whatever, you get the picture.)
You'll notice that mitochondrial, neurological and bone marrow failure problems were not mentioned in my little fantasy life but that's what I got. A little townhome in podunk America that sits between the noisy highway and a field of weeds. The laundry is still stacked up, one kid with a fever, the other getting chemo and the third stuck in the bathroom because they just ate a hamburger and their pancreas is angry now. I don't have time to gulp down water let alone sip lemonade. I have a WASband, not a husband. Hmmmm, that little life of mine is extended to this big city of Seattle and I am starting to feel like I should change my name to Dorothy.
This is not 'Kansas' anymore, it's not my perfect, imaginary life but it isn't the life I'm use to either. I feel very nervous and unprepared for the appointments today. It's all so foreign. I have taught myself so much about the blood and bone marrow, that stuff makes sense to me but mito is all so new, so scary...the word itself freaks me out.
I am pretty sure one of two things will happen today...they will say, "Nope, this is nothing close to Mitochondrial disease, thanks for coming." or they will say, "Wow, these kids have some significant muscle, nerve and mitochondrial problems going on. Here, give them the Mito cocktail...it only costs a few hundred dollars a month per child and your insurance won't cover a penny of it. It won't cure them, there is no cure but it may slow the rate at which the mitochondria in cells crumbles apart. Have a nice day, we will see you again soon."....Maybe it will be some version of these scenarios.
I'm not sure how I will handle the news either way...I guess in just a few short hours, I will know. The best I can hope for is that it will be clear to me that God's plan is underway....not under revision.
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