I Am Out Of Control
WARNING! THIS UPDATE CONTAINS SOME VENTING. :-)
I don't want to be up right now, but I am. I don't want to be wrestling with the frustrations I am wrestling with, but I am. I don't want to be out of control, but I am.
I feel like I'm trying to surf the internet on someone else's cell phone in an area with bad service and a sign-on page that never really lets you sign on. And, I don't like the internet to begin with! Isn't that funny? Does anyone else ever feel that way? Am I the only one?
I especially don't like AOL. I don't like their format. I don't like their ads. I don't like their "news" articles. I don't like the way it takes over your computer. I don't like how slow it is (no matter how new your computer is). I don't like how you can't decide what you see and what you don't. It is just too much, too big, too bulky, too, one-size-fits-all, too in-your-face... The fact that my sweet wife uses AOL on our computer at home for her business email is about as far as I can go with it, and that is because she is wise enough to use it separately from our Windows. I don't see it, and I don't have to deal with it. At least not at home.
Right here and right now, I feel like my life is being run by AOL. More specifically, I feel like Micah's life is being run by AOL, and there is nothing I can do about it. It's really starting to bother me. Thus, I am up writing to clear my head instead of trying to catch a few hours much needed sleep before Olivia has to wake up to pump (She is such a trooper!).
Micah eats every 3 hours, whether she is hungry or not. Micah eats 36 ml of food, whether she wants to (or needs to!) or not. Micah has a double chin (and gets called all of those dumb things people say about fat babies), whether it's who she is or not. Micah sleeps in an open crib, in a lighted or semi-lighted room, listening to crying babies and whatever unholy music or raise-your-children-via-TV noise happens to be playing for the nurses or babies nearby, whether she wants to or not. Micah gets poked and prodded regularly, whether she really needs to or not. Micah is surrounded by people all the time by people who have no idea who she is, many of whom have some serious spiritual baggage. Micah lives in a world of beeping alarms and flashing lights 24/7 that makes me feel crazy after just a few hours, and she has no choice about it. Micah's life has been crammed into a little mold called "micro-preemie", whether she really fits that mold or not.
I am thankful for the NICU, I am reluctantly, but truly, thankful. However, I hate that Micah is in the NICU. It is a terrible way to live, one that only someone with the amazing, God-given resilience of a newborn could survive. Even so, I can't help but feel that Micah is being changed by this process in ways that we may never be able to quantify.
The physical changes are the easiest to describe: Micah likes to eat, but what would she weigh if they weren't forcing her to eat more than she wanted? I don't know. She likes to be awake, but what would she be like if they weren't constantly having to wake her up? I don't know. She dislikes noise and light, but she can't escape either (24/7!). What if she could really rest and have some extended peace? I don't know. There are other "what if's?" that are more difficult to enumerate, harder to grasp: How did it affect Micah to have a nurse we really believe is a Wiccan? How about the bar-hopper? How about being forced to listen to some of the godless chatter we would never have exposed her to if given a choice? What about the fact that she is surrounded by so many people, for so many hours a day, who simple aren't her Mama and Papa? I don't know.
Do you see? These are the things that I, as her Daddy, her Papa, struggle with, but there is very little (if anything) I can do about any of them. I am her daddy, but I am not the Lord. I am out of control.
(This is not a blog about trusting God and allowing God to be in control: The end of the story is certain and good to me; I'm just not enjoying the journey. I am not saying I should be in control, just describing how I am not.)
We had a weekend doctor almost two months ago (can you believe it!) who kept referring to Micah as "this baby". Every single time he did it, Olivia corrected him. It was sad and sort of amusing.
Doctor: "This baby.."
Olivia: "Micah"
"This baby..."
"Micah."
"huh?"
"Her name is Micah."
"Ok. Well, he..."
"She."
"huh? Oh, 'she'"
"Micah."
"Right, she..."
"..."
"Now with this baby..."
"No. She is not 'this baby'; she is our daughter. Her name is Micah."
"Micah?"
"Yes! Micah."
"Ok. Micah."
"Thank you!"
But, it didn't fix the problem. Here in the NICU, Micah is still "this baby." It's a constant part of their system. It's like they can't help it. We have had some (though less than promised) regularity in the medical staff working with Micah, but even with those who really care about her and about her success, there is a constant thread of "this baby" running throughout the conversation. Even if they never say those words, she is "the Micro-preemie in room 5, first bed on the right." Micah Ahaha Elise, our daughter and our miracle from God, our answer to years of prayer and refusal to compromise, is regularly and constantly being reduced to that little mold: "micro-preemie."
The reality is that Micah isn't like the other babies in the NICU. (None of them are.) She doesn't fit the mold, she has already shown us this, both in her struggles and in her victories, both in what she is having to deal with, and in what she has been spared. But, functionally, she is being reduced. That's the word that describes what it is like to really love Micah with all my heart and have to watch her go through this: reduced. One of my biggest prayers right now is that Micah will grow stronger from this experience, that it is preparing her for the life and witness God has ahead of her, and that she will not get lost in the process. It is a father's cry of desperation. It's the cry of an independent man being forced to live in an AOL box. It's almost anger.
The battle is constant, this fight against the mold, this war for Micah's personhood. It never ends. it never goes away. It never gets easier. In fact, it gets harder every week. It isn't that we don't trust the medical staff (though after a few particularly incompetent nurses I trust them less than I did), it's that Micah is our daughter, we love her, and we know her well enough to know you can't just strip her of who she is and shove her into some generic "micro-preemie" framework.
I know it won't last forever. There will be a day when Micah will be able to sleep as much as she wants, eat only as much as she wants, and be surrounded only by people who truly love her. There will be a day when we can control the negative things she is exposed to, reinforce the things that point to God around her, and let her sleep in the dark. There will be a day when Micah won't have tubes and wires all over her, won't need her temperature taken every 3 hours, won't need to have her poop weighed, won't have extra fat forced on her, and won't be "first bed on the right." There will be a day when Micah will just be Micah. There will be a day when we are truly free to be her parents!
That day seems a long way off. That day hardly seems real. That day, the day of normalcy that happens for most families within the 100 hours after birth, barely feels like part of the same world we live in day in and day out. That day is like a dream; like waiting for the Rapture. It's going to happen, but there are some things that have to happen first. It is coming (no doubt!), but not yet.
And so, I am up, typing, not sleeping, sharing with you some of those nuggets of this life that mostly don't get shared because they don't go down well. They aren't cute, like Micah's pictures. They don't make people feel good about themselves, like Micah's little victories. They aren't something most people want to be a part of (even believers), because we want to see victories, not struggles. I can already see the "stats" graph on my home page dropping. But, this is not a reality show; this is real life, with both bitter and sweet (the one improving the effectiveness of the other). The sweetness of loving Micah makes the journey more bitter. The bitterness of the journey will make the homecoming more sweet. I know this, but tonight still taste bitter. Tonight, I can't sleep because I am worried about my little girl. Tonight, I taste the full force of not being in control.
I don't want to be up right now, but I am. I don't want to be wrestling with the frustrations I am wrestling with, but I am. I don't want to be out of control, but I am.
I feel like I'm trying to surf the internet on someone else's cell phone in an area with bad service and a sign-on page that never really lets you sign on. And, I don't like the internet to begin with! Isn't that funny? Does anyone else ever feel that way? Am I the only one?
I especially don't like AOL. I don't like their format. I don't like their ads. I don't like their "news" articles. I don't like the way it takes over your computer. I don't like how slow it is (no matter how new your computer is). I don't like how you can't decide what you see and what you don't. It is just too much, too big, too bulky, too, one-size-fits-all, too in-your-face... The fact that my sweet wife uses AOL on our computer at home for her business email is about as far as I can go with it, and that is because she is wise enough to use it separately from our Windows. I don't see it, and I don't have to deal with it. At least not at home.
Right here and right now, I feel like my life is being run by AOL. More specifically, I feel like Micah's life is being run by AOL, and there is nothing I can do about it. It's really starting to bother me. Thus, I am up writing to clear my head instead of trying to catch a few hours much needed sleep before Olivia has to wake up to pump (She is such a trooper!).
Micah eats every 3 hours, whether she is hungry or not. Micah eats 36 ml of food, whether she wants to (or needs to!) or not. Micah has a double chin (and gets called all of those dumb things people say about fat babies), whether it's who she is or not. Micah sleeps in an open crib, in a lighted or semi-lighted room, listening to crying babies and whatever unholy music or raise-your-children-via-TV noise happens to be playing for the nurses or babies nearby, whether she wants to or not. Micah gets poked and prodded regularly, whether she really needs to or not. Micah is surrounded by people all the time by people who have no idea who she is, many of whom have some serious spiritual baggage. Micah lives in a world of beeping alarms and flashing lights 24/7 that makes me feel crazy after just a few hours, and she has no choice about it. Micah's life has been crammed into a little mold called "micro-preemie", whether she really fits that mold or not.
I am thankful for the NICU, I am reluctantly, but truly, thankful. However, I hate that Micah is in the NICU. It is a terrible way to live, one that only someone with the amazing, God-given resilience of a newborn could survive. Even so, I can't help but feel that Micah is being changed by this process in ways that we may never be able to quantify.
The physical changes are the easiest to describe: Micah likes to eat, but what would she weigh if they weren't forcing her to eat more than she wanted? I don't know. She likes to be awake, but what would she be like if they weren't constantly having to wake her up? I don't know. She dislikes noise and light, but she can't escape either (24/7!). What if she could really rest and have some extended peace? I don't know. There are other "what if's?" that are more difficult to enumerate, harder to grasp: How did it affect Micah to have a nurse we really believe is a Wiccan? How about the bar-hopper? How about being forced to listen to some of the godless chatter we would never have exposed her to if given a choice? What about the fact that she is surrounded by so many people, for so many hours a day, who simple aren't her Mama and Papa? I don't know.
Do you see? These are the things that I, as her Daddy, her Papa, struggle with, but there is very little (if anything) I can do about any of them. I am her daddy, but I am not the Lord. I am out of control.
(This is not a blog about trusting God and allowing God to be in control: The end of the story is certain and good to me; I'm just not enjoying the journey. I am not saying I should be in control, just describing how I am not.)
We had a weekend doctor almost two months ago (can you believe it!) who kept referring to Micah as "this baby". Every single time he did it, Olivia corrected him. It was sad and sort of amusing.
Doctor: "This baby.."
Olivia: "Micah"
"This baby..."
"Micah."
"huh?"
"Her name is Micah."
"Ok. Well, he..."
"She."
"huh? Oh, 'she'"
"Micah."
"Right, she..."
"..."
"Now with this baby..."
"No. She is not 'this baby'; she is our daughter. Her name is Micah."
"Micah?"
"Yes! Micah."
"Ok. Micah."
"Thank you!"
But, it didn't fix the problem. Here in the NICU, Micah is still "this baby." It's a constant part of their system. It's like they can't help it. We have had some (though less than promised) regularity in the medical staff working with Micah, but even with those who really care about her and about her success, there is a constant thread of "this baby" running throughout the conversation. Even if they never say those words, she is "the Micro-preemie in room 5, first bed on the right." Micah Ahaha Elise, our daughter and our miracle from God, our answer to years of prayer and refusal to compromise, is regularly and constantly being reduced to that little mold: "micro-preemie."
The reality is that Micah isn't like the other babies in the NICU. (None of them are.) She doesn't fit the mold, she has already shown us this, both in her struggles and in her victories, both in what she is having to deal with, and in what she has been spared. But, functionally, she is being reduced. That's the word that describes what it is like to really love Micah with all my heart and have to watch her go through this: reduced. One of my biggest prayers right now is that Micah will grow stronger from this experience, that it is preparing her for the life and witness God has ahead of her, and that she will not get lost in the process. It is a father's cry of desperation. It's the cry of an independent man being forced to live in an AOL box. It's almost anger.
The battle is constant, this fight against the mold, this war for Micah's personhood. It never ends. it never goes away. It never gets easier. In fact, it gets harder every week. It isn't that we don't trust the medical staff (though after a few particularly incompetent nurses I trust them less than I did), it's that Micah is our daughter, we love her, and we know her well enough to know you can't just strip her of who she is and shove her into some generic "micro-preemie" framework.
I know it won't last forever. There will be a day when Micah will be able to sleep as much as she wants, eat only as much as she wants, and be surrounded only by people who truly love her. There will be a day when we can control the negative things she is exposed to, reinforce the things that point to God around her, and let her sleep in the dark. There will be a day when Micah won't have tubes and wires all over her, won't need her temperature taken every 3 hours, won't need to have her poop weighed, won't have extra fat forced on her, and won't be "first bed on the right." There will be a day when Micah will just be Micah. There will be a day when we are truly free to be her parents!
That day seems a long way off. That day hardly seems real. That day, the day of normalcy that happens for most families within the 100 hours after birth, barely feels like part of the same world we live in day in and day out. That day is like a dream; like waiting for the Rapture. It's going to happen, but there are some things that have to happen first. It is coming (no doubt!), but not yet.
And so, I am up, typing, not sleeping, sharing with you some of those nuggets of this life that mostly don't get shared because they don't go down well. They aren't cute, like Micah's pictures. They don't make people feel good about themselves, like Micah's little victories. They aren't something most people want to be a part of (even believers), because we want to see victories, not struggles. I can already see the "stats" graph on my home page dropping. But, this is not a reality show; this is real life, with both bitter and sweet (the one improving the effectiveness of the other). The sweetness of loving Micah makes the journey more bitter. The bitterness of the journey will make the homecoming more sweet. I know this, but tonight still taste bitter. Tonight, I can't sleep because I am worried about my little girl. Tonight, I taste the full force of not being in control.
Comments
Thank you for your honesty. Never hide it. It's beautiful and appreciated.
Praying without ceasing...
Hugs and blessings to you all!
May the LOVE of YESHUA flood that NICU ward.