I usually think in music. Like, you say a phrase and I suddenly have a song that finishes the phrase, has something to do with the phrase, or links it somehow to the thought. I think in music. This morning, I started thinking in movie. Very specific movie. The Prince of Egypt. Random.
I was in the shower. Wanting to be in bed, but Kipton's sweet arms had been whacking me in the head for about 30 minutes and his cute little snot face had been open-mouth breathing in my face for about the same amount of time. I was already feeling.. unstable. Thank you pregnancy. I was intentionally taking too long, trying to find some sort of strength to make it through the very long day that was ahead. I was semi-praying, semi-planning, semi- thinking. And suddenly, the face of Dreamworks Moses, the water parting, and the whale in the parted water flashed in my head. In bits and pieces, the song flooded over me The chorus, repeating over and over "There can be miracles when you believe". "Many nights we've prayed." "A hope we barely understood." "Though hope is frail, it's hard to kill." Over and over.
It was like permission to cry. To sob. Silently as the water was streaming down from the shower. It was permission to hope. It was permission to believe. It was permission to... feel... everything. Despair, confusion, frustration, hurt. Hope, peace, comfort, blind trust. All pouring over me like rain. Flooding me. Reminding me that miracles aren't always about outcomes. The miracles happened through faith. That miracles are not about seeing the big picture at all-- miracles are about imagination. Miracles are about seeing beyond yourself. Miracles are about daring to have hope. Miracles are about believing in the midst of the unbelievable. Miracles are about... being able to take a step into the middle of the sea with an army hunting you.
Sometimes I feel like the army is hunting me. It's an army of doubt and despair. Looming just behind me. Fighting belief.
But I believe. I don't need a miracle of healing to make my belief real. I doubt my belief enough to know it's real. Sounds strange, but it makes sense to me. I may not be praying for a miracle of healing-- at some point I might start-- but I think praying for what seems impossible- comfort and peace- is part of the miracle. I may not have that 'sweet spirit' that lends me to graciousness about the gifts we've been given, the joy of being Everett's parents, that I know God has plan for this and that He has directed this into our lives to create good, but I can say I have an open heart. I can't say that my heart is settled. I can't say that I feel only hope and thankfulness. I can't say that my first thought is how awesome and amazing my God is. But I can say that I have faith that God is loving. I have faith that God is faithful. I have faith that God gives comfort. I have faith that God is there. That he is crying with us. That the waters have already been parted... we just have be willing to walk between the walls of water. The walls of fear. The walls of despair. I have faith that he will keep the fear and despair at arm's length. I have faith that there can be miracles. When you believe. Though hope is frail. It's hard to kill.
Thursday, February 23, 2012
Tuesday, February 21, 2012
But Right Now, I'm Short Sighted
I hate being pregnant. I think my contempt for pregnancy grows with each pregnancy. I hate what it does to my emotions-- more adequately put, I hate that it makes me unstable. I hate peeing when I laugh. I hate peeing when I sneeze. I hate peeing when I cough. I hate peeing every 25 minutes. The kicks. Some women love feeling the baby kick and move. I think it's the strangest thing on earth. Especially when you feel it in several different places all at once-- especially when you feel the baby kick through your bellybutton, your side, and your.... ahem... cervix. I hate that everything that makes you a girl gets swollen, including your emotions and your illogicalness. I hate the cravings. I hate feeling starved and stuffed at the same time. I HATE craving icky foods ALL THE TIME. I hate not being able to breathe. I hate not being able to see my feet. I hate that shaving my legs is more like running a 5K. I hate that MORE weight loss is looming ahead. I HATE having to lose the same blooming 35 lbs every 18 months. OMG.
I miss feeling comfortable in my own skin. I miss clothes that flatter. I miss my ass... because somehow what used to be one of my best physical qualities is now swallowed up by a 45 inch basketball belly and 14 lb saggy boobs and 22 inch thunder thighs. I miss pretty dresses. Not that I got to wear them with kids, but I miss them nonetheless. I miss running. I miss breathing. Without huffing and puffing. I miss painting my toenails. I miss coloring my hair every 8 weeks. I miss confidence. I think I lost it when I had Aiden. Most all of it. I suppose I had some to spare, so not totally a bad thing. I miss tank tops that don't make me look like an *actual* tank. I miss sleeping. I miss *regular* nightmares. I miss feeling attractive. I miss being able to think straight. I miss being able to tie my shoes. Without having to sit up in between feet. I miss snuggling in comfort.
But in the end, it was all worth it. Because I love babies. I LOVE babies. LOVE them. I love to hold them. All the time. I love to snuggle them. I love to smell them. Even when it's not so pleasant. I love to take way too many pictures of them. I love to nap with them. I love to dress them. Put them in the wrap and go for a walk. I love to watch them grow. I love to watch them learn how to sit up. I love to watch them learn to play. To roll. To crawl. To walk. To dance. I love to watch personality unfold. I love to watch them grow. It is hard. It is tiring. It is sleepless. It is daunting at times. But I love it.
And I look in the mirror and think. I walk up the stairs and barely breathe and think. I watch Kipton 'dince' enthusiastically to whatever music he can find... and I think. I watch Aiden and Kipton play and I think. I look at the baby pictures of the boys and I think. I see a family of five and I think. I look in the mirror and I think. I hold a newborn baby and I think. I see pictures of new babies and I think. I see other pregnant women and I think. I read the email subject "Your Pregnancy Week #: (40-#) To Go" and I think. I read updates of pregnancy complications and I think. And I look in the mirror. And I think.
I think. I think about silent nights. I think about 14 lb saggy boobs with no purpose. I think about a silent delivery. I think about an empty car seat. I think about being 35 lbs overweight with nothing to show. I think about 29+ weeks of pregnancy and an empty cradle. I think about the doctors and nurses taking him away. Not to the NICU. Away. I think about lowering a casket into the ground. With my Everett in it.
I TRY to think about the joy of just being able to hold my baby when he's born. I TRY to think of what he might have been like if he didn't have so many birth defects. I TRY to envision what our life with 3 boys would be like. I TRY to think about just being happy to hold him. I TRY to be thankful for the moments we might have with him alive. I TRY to think about the pictures I want to have taken upon his birth. I TRY to think about snuggling him every second I have. I TRY to imagine what he's going to look like. I TRY to think about his sweet little hands holding my finger.
Then I think about the other possibilities.
What happens if he defies the odds? What happens if he lives? How severe will the mental retardation be? Will there be any physical deformities? Will he be able to breathe on his own? Will he have to have feeding tubes? Will he really have a life? Will he recognize anyone? Anything? Will he have a personality? Will he be able to sit up on his own? Will he have to have elimination tubes? Will I be able to hold him? Will I have to love him through an incubator for months? What if he lives? Is it really living? And how do you decide?
How do you decide which family members to protect? How do you decide which family members *deserve* your attention? How do you... pick? We talked about it last night. Keith has decided. Wholeheartedly. Without question. Keith says we have to protect our family. We have to think about our boys. We have to protect our marriage. We have to protect our family. And I cry. Because how is Everett *not* a part of our family? How is he *not* one of our boys?
And yet I am reminded, there are some things worse than death. I hear more and more personal testimonies about this. I know many will disagree. But some things ARE worse than death. Keith told me of one his co-workers' family that had a son who was not 'supposed' to live after birth more than a few hours. He lived 40 years. Never able to sit up alone. Mental capacity of a 6 month old. Completely bedridden. Unable to communicate. Unable to express anything other than basic need. Is breathing really life? Is a beating heart really life? Is it simply SELFISH to force that existence onto a precious soul?
We will not be able to financially afford his life if he defies the odds. We were told by two doctors that the thought was jumping the gun. We were told by 2 doctors that we should anticipate holding our baby while we could. We have been told that we should not expect a full day of life. But What if?
In less than 40 months of marriage, 46 months of KNOWING each other, we've been under a constant onslaught of stress and difficulty. Pregnant before we got married. Preemie baby. 21 days in the NICU. No job for me. Two jobs for Keith to barely keep us afloat for a year. Another pregnancy. Full term this time, but a baby that doesn't sleep. For 18 months. Me teaching college at night. Keith working all day. Putting the VERY young boys down alone every night. Me not getting home until 10. Not sleeping. Keith started grad school, an accelerated program. No more teaching for me. Means no income to speak of again. Seeing patients in the house for 2 1/2 years with the boys around. Not sleeping. Starting an office. Keith quits grad school so I can start the office. COMPLETELY unplanned pregnancy. Pregnancy with a bleak outlook. I'm not sure we could handle the stress of Everett living without a complete miracle. Add in that we'd STILL be living on Keith's salary and my student loans aren't going anywhere just because my life has taken a ton of twists and turns. I'm not sure we'd make it on many levels.
The joy of pregnancy is a baby. There's nothing else enjoyable about it in my book. How do you embrace "I knit you together in your mother's womb" with joy and peace while you wait for your baby to die in your womb? How do you find comfort in "For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future" when life is so damn riddled with pain? How do you reconcile "fearfully and wonderfully made" with "incompatible with life"? How do you feel comfort when nothing is comfortable? The only redeeming thing about pregnancy is holding your baby and watching him grow. Will we get that chance? If we do, will it really be watching a baby grow? or is it watching a body age? Is there a difference? Does it change anything? How does it not change everything?
Thankfully peace is different than comfort. Peace now comes in waves. Perhaps even more intermittent as the pregnancy continues. Not what anyone wants to hear, I know. I should be raving of peace and comfort and a God with a plan that is higher than my thoughts. But right now, I'm just a Mommy who is losing her baby today. Right now, I'm a Mommy who just wants to rock her baby to sleep for a few hours. Right now, I'm a Mommy who doesn't want to plan a funeral for her baby. Right now, I'm a Mommy who doesn't want to think about what delivery is going to be like. Not because of the pain-- been there, done that-- but because I'm terrified of how to prepare for a delivery with only one painfully sad outcome predicted at this point.
I'm well aware and believe that God provides comfort, counts my tears, and hears my sorrows, but right now I'm short sighted. And I hate being pregnant even more than I ever have. Because there are no booties to pick out. There are no newborn outfits to pick out for home coming. There are registries. There are no stockpiles of newborn and size 1 diapers. There are no nursing bras. There is no cradle. There is no car seat.
There is only fear. Hurt. Longing. Pain. Frustration. Confusion. Devastation.
But I know it will come. The comfort. The blessing. The peace. The bigger picture. It will all come.
But not today. Because right now, I'm still a little short sighted.
I miss feeling comfortable in my own skin. I miss clothes that flatter. I miss my ass... because somehow what used to be one of my best physical qualities is now swallowed up by a 45 inch basketball belly and 14 lb saggy boobs and 22 inch thunder thighs. I miss pretty dresses. Not that I got to wear them with kids, but I miss them nonetheless. I miss running. I miss breathing. Without huffing and puffing. I miss painting my toenails. I miss coloring my hair every 8 weeks. I miss confidence. I think I lost it when I had Aiden. Most all of it. I suppose I had some to spare, so not totally a bad thing. I miss tank tops that don't make me look like an *actual* tank. I miss sleeping. I miss *regular* nightmares. I miss feeling attractive. I miss being able to think straight. I miss being able to tie my shoes. Without having to sit up in between feet. I miss snuggling in comfort.
But in the end, it was all worth it. Because I love babies. I LOVE babies. LOVE them. I love to hold them. All the time. I love to snuggle them. I love to smell them. Even when it's not so pleasant. I love to take way too many pictures of them. I love to nap with them. I love to dress them. Put them in the wrap and go for a walk. I love to watch them grow. I love to watch them learn how to sit up. I love to watch them learn to play. To roll. To crawl. To walk. To dance. I love to watch personality unfold. I love to watch them grow. It is hard. It is tiring. It is sleepless. It is daunting at times. But I love it.
And I look in the mirror and think. I walk up the stairs and barely breathe and think. I watch Kipton 'dince' enthusiastically to whatever music he can find... and I think. I watch Aiden and Kipton play and I think. I look at the baby pictures of the boys and I think. I see a family of five and I think. I look in the mirror and I think. I hold a newborn baby and I think. I see pictures of new babies and I think. I see other pregnant women and I think. I read the email subject "Your Pregnancy Week #: (40-#) To Go" and I think. I read updates of pregnancy complications and I think. And I look in the mirror. And I think.
I think. I think about silent nights. I think about 14 lb saggy boobs with no purpose. I think about a silent delivery. I think about an empty car seat. I think about being 35 lbs overweight with nothing to show. I think about 29+ weeks of pregnancy and an empty cradle. I think about the doctors and nurses taking him away. Not to the NICU. Away. I think about lowering a casket into the ground. With my Everett in it.
I TRY to think about the joy of just being able to hold my baby when he's born. I TRY to think of what he might have been like if he didn't have so many birth defects. I TRY to envision what our life with 3 boys would be like. I TRY to think about just being happy to hold him. I TRY to be thankful for the moments we might have with him alive. I TRY to think about the pictures I want to have taken upon his birth. I TRY to think about snuggling him every second I have. I TRY to imagine what he's going to look like. I TRY to think about his sweet little hands holding my finger.
Then I think about the other possibilities.
What happens if he defies the odds? What happens if he lives? How severe will the mental retardation be? Will there be any physical deformities? Will he be able to breathe on his own? Will he have to have feeding tubes? Will he really have a life? Will he recognize anyone? Anything? Will he have a personality? Will he be able to sit up on his own? Will he have to have elimination tubes? Will I be able to hold him? Will I have to love him through an incubator for months? What if he lives? Is it really living? And how do you decide?
How do you decide which family members to protect? How do you decide which family members *deserve* your attention? How do you... pick? We talked about it last night. Keith has decided. Wholeheartedly. Without question. Keith says we have to protect our family. We have to think about our boys. We have to protect our marriage. We have to protect our family. And I cry. Because how is Everett *not* a part of our family? How is he *not* one of our boys?
And yet I am reminded, there are some things worse than death. I hear more and more personal testimonies about this. I know many will disagree. But some things ARE worse than death. Keith told me of one his co-workers' family that had a son who was not 'supposed' to live after birth more than a few hours. He lived 40 years. Never able to sit up alone. Mental capacity of a 6 month old. Completely bedridden. Unable to communicate. Unable to express anything other than basic need. Is breathing really life? Is a beating heart really life? Is it simply SELFISH to force that existence onto a precious soul?
We will not be able to financially afford his life if he defies the odds. We were told by two doctors that the thought was jumping the gun. We were told by 2 doctors that we should anticipate holding our baby while we could. We have been told that we should not expect a full day of life. But What if?
In less than 40 months of marriage, 46 months of KNOWING each other, we've been under a constant onslaught of stress and difficulty. Pregnant before we got married. Preemie baby. 21 days in the NICU. No job for me. Two jobs for Keith to barely keep us afloat for a year. Another pregnancy. Full term this time, but a baby that doesn't sleep. For 18 months. Me teaching college at night. Keith working all day. Putting the VERY young boys down alone every night. Me not getting home until 10. Not sleeping. Keith started grad school, an accelerated program. No more teaching for me. Means no income to speak of again. Seeing patients in the house for 2 1/2 years with the boys around. Not sleeping. Starting an office. Keith quits grad school so I can start the office. COMPLETELY unplanned pregnancy. Pregnancy with a bleak outlook. I'm not sure we could handle the stress of Everett living without a complete miracle. Add in that we'd STILL be living on Keith's salary and my student loans aren't going anywhere just because my life has taken a ton of twists and turns. I'm not sure we'd make it on many levels.
The joy of pregnancy is a baby. There's nothing else enjoyable about it in my book. How do you embrace "I knit you together in your mother's womb" with joy and peace while you wait for your baby to die in your womb? How do you find comfort in "For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future" when life is so damn riddled with pain? How do you reconcile "fearfully and wonderfully made" with "incompatible with life"? How do you feel comfort when nothing is comfortable? The only redeeming thing about pregnancy is holding your baby and watching him grow. Will we get that chance? If we do, will it really be watching a baby grow? or is it watching a body age? Is there a difference? Does it change anything? How does it not change everything?
Thankfully peace is different than comfort. Peace now comes in waves. Perhaps even more intermittent as the pregnancy continues. Not what anyone wants to hear, I know. I should be raving of peace and comfort and a God with a plan that is higher than my thoughts. But right now, I'm just a Mommy who is losing her baby today. Right now, I'm a Mommy who just wants to rock her baby to sleep for a few hours. Right now, I'm a Mommy who doesn't want to plan a funeral for her baby. Right now, I'm a Mommy who doesn't want to think about what delivery is going to be like. Not because of the pain-- been there, done that-- but because I'm terrified of how to prepare for a delivery with only one painfully sad outcome predicted at this point.
I'm well aware and believe that God provides comfort, counts my tears, and hears my sorrows, but right now I'm short sighted. And I hate being pregnant even more than I ever have. Because there are no booties to pick out. There are no newborn outfits to pick out for home coming. There are registries. There are no stockpiles of newborn and size 1 diapers. There are no nursing bras. There is no cradle. There is no car seat.
There is only fear. Hurt. Longing. Pain. Frustration. Confusion. Devastation.
But I know it will come. The comfort. The blessing. The peace. The bigger picture. It will all come.
But not today. Because right now, I'm still a little short sighted.
Saturday, February 18, 2012
seems my life has an astonishing resemblance to a three year old
I'm so exhausted lately. For good reason I suppose. Things in the office are moving quickly and in a positive direction. My phone is still gone. The boys still make me laugh, And Scream when the Truvia winds up all over the floor. Trash cans dumped. Screaming fits. Whining. Life just goes on. It just... keeps going. No slowing down. No rest. Downtime comes in three forms: doctor's appointments and sleeplessness and Gigi's house.
Nightmares have riddled my nights. Chase dreams. Attack dreams. Kidnapping dreams. Attacking chase dreams. Death dreams. Pregnancy dreams, too, are incredibly vivid. You can almost smell them. (Or maybe that's Keith, I don't know.) I wake up terrified. Shaking. And, as always, I have to pee. I try to go back to bed. After a while I drift back to sleep- usually for the next 30 minutes because it's time to get up. And the days just keep rolling along. After a few days, completely drained, I just... crash. Like in some of my dreams. I just want to rest. I want the anxiety to go away. I want the sleeplessness to go away. I want the uncertainty to go away. The nightmares are always worse when I start to have hope. When I think things might just change.
I sat Thursday in the doctor's office, waiting. Staring, sometimes blankly, at the beautiful mosaic of perfect newborns adorning the wall. Smiling parents or doctors... or both. I caught myself going back to this perfect little face in the upper right corner. Third from the end. Top row. I would leave it and keep scanning the pictures, going to the second board on the wall behind the table. But I just kept going back to that one little face. And suddenly, I was crying. I stopped myself before sobbing. The OB office is typically a very happy, and strangely enough, loud place. The doctors, the females at least, are happy and boisterous. I wasn't exactly in that frame of mind. So I pulled out my make up and put it on. For the first time that day. So much for down time. The appointment itself went well. I love my OB group. It makes me sad that I they won't be delivering me. Well, they might, but I can't have hope for Everett and hopes of a delivery by my beloved group.
Gigi's house is almost rest. The boys love the farm so much. They love the tractors. The yard. The golf cart. Gigi. Papa. Slowing down isn't on the list of things to do. Thankfully I can take a little break throughout the day. I have been beyond exhausted throughout this entire pregnancy. Is it a result of a 2 vessel cord to Everett? Am I stressed overall and that's what's causing the continued exhaustion? I don't know. All I know is I can't PLAY with the boys because I can't breathe. I can't chase them the way I want to because I have sharp pains when I move for more than a few minutes at a time. And when I just 'push through', I pay for it later. It's hard on Keith because at the end of the day, especially Friday through Monday, I have no energy. I have no strength. I'm not myself... even though I'm not totally sure who 'myself' is half the time. So besides me being at work three days a week, not getting home to make dinner, when I AM home to make dinner, I'm too pooped to clean up or be much help otherwise. So I'm hoping there will be more rest at Gigi's before Monday so that I'll have more energy to make it through next week.
I won't even tackle the emotional exhaustion at present. I have to put it away occasionally. Just to make it through. I want to go to my childhood church-- more or less for my parents-- but I don't think I can handle the multitude of hugs and prayers and encouragement. I need more down time. I need SOME down time. So many hugs and prayers in one day will keep me awake for days. I'm too exhausted to go through it.
It seems harder if I give myself a chance to hope. If I give myself a chance to pray for a miracle. I find myself once a week or so driving aimlessly around bickering with.... me. Telling myself to pray for a miracle. Begging myself to believe it could happen. Then quickly shutting the thought down. It's easier not to be hopeful. It's easier to ...ignore it and hope it will go away. Like bad behavior in children... if you ignore it, they're supposed to stop doing it right? Hmph... seems my life has an astonishing resemblance to a three year old. Disobedient. Defiant. Some sweet moments. But always a new fight looming on the horizon.
And I just want to rest.
I want to stop wrestling with myself. But it's impossible. I can't not hope for a miracle. I can't quite bring myself to pray for one. I want to pour my energy into my boys. I can barely pour water by the end of the day. I want to be emotionally available. I can't even really have an (unwritten) conversation with my husband. I want to somehow feel more spiritual about the whole thing. I can't, for the life of me, make this process about lessons to be learned. About seeing deeper layers of God. About feeling his arms surrounding us and bringing us closer as a family. And I war with myself about this. I war with myself about not being able to be 'spiritual' about the whole thing. And I just want to rest. Will praying for a miracle soothe me? Will just believing that all will be okay make it all okay? Will ignoring it all make it go away?
Will rest even help? Will clearer answers? Will hope? Will solidified funeral plans? Will holding him? Will crying and screaming? Will a few days away from everything? Will just NOT looking in the mirror help? Will maternity photos help? Will anything help? When will it all just get better?
When will it all just get.... better?
Nightmares have riddled my nights. Chase dreams. Attack dreams. Kidnapping dreams. Attacking chase dreams. Death dreams. Pregnancy dreams, too, are incredibly vivid. You can almost smell them. (Or maybe that's Keith, I don't know.) I wake up terrified. Shaking. And, as always, I have to pee. I try to go back to bed. After a while I drift back to sleep- usually for the next 30 minutes because it's time to get up. And the days just keep rolling along. After a few days, completely drained, I just... crash. Like in some of my dreams. I just want to rest. I want the anxiety to go away. I want the sleeplessness to go away. I want the uncertainty to go away. The nightmares are always worse when I start to have hope. When I think things might just change.
I sat Thursday in the doctor's office, waiting. Staring, sometimes blankly, at the beautiful mosaic of perfect newborns adorning the wall. Smiling parents or doctors... or both. I caught myself going back to this perfect little face in the upper right corner. Third from the end. Top row. I would leave it and keep scanning the pictures, going to the second board on the wall behind the table. But I just kept going back to that one little face. And suddenly, I was crying. I stopped myself before sobbing. The OB office is typically a very happy, and strangely enough, loud place. The doctors, the females at least, are happy and boisterous. I wasn't exactly in that frame of mind. So I pulled out my make up and put it on. For the first time that day. So much for down time. The appointment itself went well. I love my OB group. It makes me sad that I they won't be delivering me. Well, they might, but I can't have hope for Everett and hopes of a delivery by my beloved group.
Gigi's house is almost rest. The boys love the farm so much. They love the tractors. The yard. The golf cart. Gigi. Papa. Slowing down isn't on the list of things to do. Thankfully I can take a little break throughout the day. I have been beyond exhausted throughout this entire pregnancy. Is it a result of a 2 vessel cord to Everett? Am I stressed overall and that's what's causing the continued exhaustion? I don't know. All I know is I can't PLAY with the boys because I can't breathe. I can't chase them the way I want to because I have sharp pains when I move for more than a few minutes at a time. And when I just 'push through', I pay for it later. It's hard on Keith because at the end of the day, especially Friday through Monday, I have no energy. I have no strength. I'm not myself... even though I'm not totally sure who 'myself' is half the time. So besides me being at work three days a week, not getting home to make dinner, when I AM home to make dinner, I'm too pooped to clean up or be much help otherwise. So I'm hoping there will be more rest at Gigi's before Monday so that I'll have more energy to make it through next week.
I won't even tackle the emotional exhaustion at present. I have to put it away occasionally. Just to make it through. I want to go to my childhood church-- more or less for my parents-- but I don't think I can handle the multitude of hugs and prayers and encouragement. I need more down time. I need SOME down time. So many hugs and prayers in one day will keep me awake for days. I'm too exhausted to go through it.
It seems harder if I give myself a chance to hope. If I give myself a chance to pray for a miracle. I find myself once a week or so driving aimlessly around bickering with.... me. Telling myself to pray for a miracle. Begging myself to believe it could happen. Then quickly shutting the thought down. It's easier not to be hopeful. It's easier to ...ignore it and hope it will go away. Like bad behavior in children... if you ignore it, they're supposed to stop doing it right? Hmph... seems my life has an astonishing resemblance to a three year old. Disobedient. Defiant. Some sweet moments. But always a new fight looming on the horizon.
And I just want to rest.
I want to stop wrestling with myself. But it's impossible. I can't not hope for a miracle. I can't quite bring myself to pray for one. I want to pour my energy into my boys. I can barely pour water by the end of the day. I want to be emotionally available. I can't even really have an (unwritten) conversation with my husband. I want to somehow feel more spiritual about the whole thing. I can't, for the life of me, make this process about lessons to be learned. About seeing deeper layers of God. About feeling his arms surrounding us and bringing us closer as a family. And I war with myself about this. I war with myself about not being able to be 'spiritual' about the whole thing. And I just want to rest. Will praying for a miracle soothe me? Will just believing that all will be okay make it all okay? Will ignoring it all make it go away?
Will rest even help? Will clearer answers? Will hope? Will solidified funeral plans? Will holding him? Will crying and screaming? Will a few days away from everything? Will just NOT looking in the mirror help? Will maternity photos help? Will anything help? When will it all just get better?
When will it all just get.... better?
Friday, February 10, 2012
Because it's obsess about my iPhone or fall apart
Keith called me yesterday at work and asked how I was doing. I told him I was throwing myself into my lost iPhone. Researching possibilities, looking for new/used phone options, ebaying, amazoning, etc. Burying myself in my lost iPhone. Why? Well, if you have an iPhone you don't really NEED an explanation :) No, really, I know how stupid that sounds, but it only sounds stupid if you don't have one. And if you lost it in the midst of needing some really major distraction to get through the week... or month, it's a GREAT way to obsess. Because it's obsess about my iPhone or fall apart.
The stupid computer wouldn't work Tuesday when we got home, so I couldn't adequately vent. So I've been stuffing it for days. The doctor's appointment was only frustrating. No great miracles. No changes for Everett of any kind. This time, however, we're told that the neonatologist has the final word in what will be done if Everett is born living. That was new info on two fronts: Everett might ACTUALLY survive delivery? Small chance, since each deformity increases his risk of preterm miscarriage/stillbirth... and his congenital diaphragmatic hernia is a 50% miscarriage rate at best. And that's just one of six major problems. That the doctors could come sweep him out of our arms is absolutely infuriating. And it would be doctors that we don't even know because, (new info,too) she doesn't think I can deliver at Cherokee Northside, since she seems to think it'll be a live birth. What? Because everyone else has told us it's *our* choice. That it didn't really matter *where* because Everett wouldn't make it through delivery, and if he did, it would be palliative care (ie hold your baby til he dies-- minutes at most), no need for a level 3 nursery... or that intervention of any kind would even help. And I'll be damned if some doctor/team is going to steal any of the precious moments we might have with a living son. I was FURIOUS. And it still makes me mad. I still boil a little every time I think about it. At that point, I kept asking-- and finally started repeating all of the deformities-- what's the REAL LIKELIHOOD of a live birth? I mean, we'd been told to this point, slim to none, no chance of going home; likely, it will be a stillbirth, noticed by cessation of fetal movement the day of or before his induced stillborn delivery. WHY CAN'T ANYONE JUST LEVEL WITH US!?!?! We had already accepted the fate of our baby, what is this new idea that he could live (if only for a few minutes) and the doctors get to decide what will and won't be done?!?!
And then she did her own ultrasound and seemed to change her tune a little. Not really talking about a live birth too much at that point. HAVE YOU NOT READ THE STUPID CHART WOMAN?!?! UGH. So we ask about the hospital procedures for stillborn babies and their... removal from the hospital. Funeral director? Cremation on site? She can't tell us anything. So frustrating. This is where parents come when their baby is going to die... AND YOU CAN'T TELL ME THE NORMAL PROCEDURES?? You have to REFER me to ANOTHER specialist? Modern American medicine at its best. Not to mention it had been 3 hours since we arrived and we were finally leaving. At 6. At Northside Hospital. On 285. At 400. Going home at the moment wasn't really an option.
So we found some dinner. And we rehash what just happened. Totally different perspectives, both frustrated by the whole thing, though. So then Keith wanted to talk about "the plans". At that point, I had to check out emotionally and it's the first time that he really has "checked in". He wants a funeral, no viewing, no embalming, but a casket and set burial site. He doesn't know how he feels about cremation. He seems to think every one is cremated together and you get back what you get back. I have only one major thought: What does it matter? It's a lifeless, soulless body. Who cares what form it takes? A funeral is going to kill us financially. The last thing we need on top of all THIS stress is MORE financial tightness. I don't know what I'd do with ashes... or even care if I get ashes. I'll go back to the ultrasound pictures and DVDs, the writing, and pictures we're going to take. I don't know that I *need* a place to go back to. Besides, with two little boys, it'll be YEARS before we can actually go in peace unless we get someone to keep them. Maybe I feel that way because I've worked on cadavers. I don't know. He didn't understand that *at all* and asked what I would do if money wasn't an issue.... at which point I couldn't hold it together anymore. And I told him, I HAVE to think about it logically/financially because I can't bear the thought of planning my Everett's burial. No matter the form. I can't handle thinking about burying my baby. But we have to. And I just... I can't.
I can't envision a tiny little casket. I can't think about it being lowered into the ground where I can't hold him anymore. Where I can't hear him cry. Where I can't kiss his little face. I can't envision a hideous urn full of ashes that used to be my baby. I can't do it.
I can't do it and run my office. I can't do it and bring in new patients. I can't do it and bring in a new doctor. I can't do it and enjoy my boys. I can't do it and go to church. I can't do it and have a conversation. I can't do it.
I can't think about making the plans for the burial of my baby. I can't do it and survive the daily grind. I can't do it and fight the despair that lingers so closely to my heart.
So I obsess. About my lost iPhone. I search constantly. I check out other phones every second I can. I can't even pour myself into work as many people do, because so much of my work is changing BECAUSE I'll be burying my son before the middle of May. I think about every possible place the phone could be between the kitchen counter and Grandma's house. I run through last Thursday as if it was my favorite scene in my favorite movie.
So I obsess about my iPhone. Because I cry when I see my good friend's new baby pictures. Doesn't take away my happiness for that family... but it reminds me that I'll never bring my Everett home. He'll never lay on my lap, pink and sleeping all balled up for a picture. He won't "voluntarily" hold my finger.
So I obsess about my lost iPhone. Because I cry when I read of a high school friend's loss of an unborn child. Because I cry if sit still too long. Because even though I'm happy for a friend who just found out about her pregnancy, I'm terrified for her all at the same time. I pray-- dear God, PLEASE keep her from this pain. PLEASE give her a healthy baby. PLEASE God don't let *this* be her reality. I think of a friend who's baby has cancer and is going through chemo-- and I beg. I plead. With the ceiling to heal that precious little girl. Take these fears from her parents. Take this pain from her body. Take this stress from the family.
And damn if it all just feels pointless sometimes. The praying. The obsessing. The distractions. Because at the end of the day, when it's all quiet, it's me and Everett. Laying in the bed (or on floor between the boys), feeling him kick and roll. Hoping somehow it never stops. Hoping against all reality that God will 'show off' and use us to show his power instead of his love. I lay there wondering if our marriage will survive this awful reality that looms before us as I feel myself withdrawing from anyone and everyone because it's too painful to engage emotionally face to face. I wonder if the office will survive my absence. I wonder if I will create the financial ruin of our family. And then I wonder if I'll ever find my iPhone. Because I can't go any further into my hurt at that point.
So I obsess. Over my lost iPhone. Because otherwise, I can't survive this painful reality..
The stupid computer wouldn't work Tuesday when we got home, so I couldn't adequately vent. So I've been stuffing it for days. The doctor's appointment was only frustrating. No great miracles. No changes for Everett of any kind. This time, however, we're told that the neonatologist has the final word in what will be done if Everett is born living. That was new info on two fronts: Everett might ACTUALLY survive delivery? Small chance, since each deformity increases his risk of preterm miscarriage/stillbirth... and his congenital diaphragmatic hernia is a 50% miscarriage rate at best. And that's just one of six major problems. That the doctors could come sweep him out of our arms is absolutely infuriating. And it would be doctors that we don't even know because, (new info,too) she doesn't think I can deliver at Cherokee Northside, since she seems to think it'll be a live birth. What? Because everyone else has told us it's *our* choice. That it didn't really matter *where* because Everett wouldn't make it through delivery, and if he did, it would be palliative care (ie hold your baby til he dies-- minutes at most), no need for a level 3 nursery... or that intervention of any kind would even help. And I'll be damned if some doctor/team is going to steal any of the precious moments we might have with a living son. I was FURIOUS. And it still makes me mad. I still boil a little every time I think about it. At that point, I kept asking-- and finally started repeating all of the deformities-- what's the REAL LIKELIHOOD of a live birth? I mean, we'd been told to this point, slim to none, no chance of going home; likely, it will be a stillbirth, noticed by cessation of fetal movement the day of or before his induced stillborn delivery. WHY CAN'T ANYONE JUST LEVEL WITH US!?!?! We had already accepted the fate of our baby, what is this new idea that he could live (if only for a few minutes) and the doctors get to decide what will and won't be done?!?!
And then she did her own ultrasound and seemed to change her tune a little. Not really talking about a live birth too much at that point. HAVE YOU NOT READ THE STUPID CHART WOMAN?!?! UGH. So we ask about the hospital procedures for stillborn babies and their... removal from the hospital. Funeral director? Cremation on site? She can't tell us anything. So frustrating. This is where parents come when their baby is going to die... AND YOU CAN'T TELL ME THE NORMAL PROCEDURES?? You have to REFER me to ANOTHER specialist? Modern American medicine at its best. Not to mention it had been 3 hours since we arrived and we were finally leaving. At 6. At Northside Hospital. On 285. At 400. Going home at the moment wasn't really an option.
So we found some dinner. And we rehash what just happened. Totally different perspectives, both frustrated by the whole thing, though. So then Keith wanted to talk about "the plans". At that point, I had to check out emotionally and it's the first time that he really has "checked in". He wants a funeral, no viewing, no embalming, but a casket and set burial site. He doesn't know how he feels about cremation. He seems to think every one is cremated together and you get back what you get back. I have only one major thought: What does it matter? It's a lifeless, soulless body. Who cares what form it takes? A funeral is going to kill us financially. The last thing we need on top of all THIS stress is MORE financial tightness. I don't know what I'd do with ashes... or even care if I get ashes. I'll go back to the ultrasound pictures and DVDs, the writing, and pictures we're going to take. I don't know that I *need* a place to go back to. Besides, with two little boys, it'll be YEARS before we can actually go in peace unless we get someone to keep them. Maybe I feel that way because I've worked on cadavers. I don't know. He didn't understand that *at all* and asked what I would do if money wasn't an issue.... at which point I couldn't hold it together anymore. And I told him, I HAVE to think about it logically/financially because I can't bear the thought of planning my Everett's burial. No matter the form. I can't handle thinking about burying my baby. But we have to. And I just... I can't.
I can't envision a tiny little casket. I can't think about it being lowered into the ground where I can't hold him anymore. Where I can't hear him cry. Where I can't kiss his little face. I can't envision a hideous urn full of ashes that used to be my baby. I can't do it.
I can't do it and run my office. I can't do it and bring in new patients. I can't do it and bring in a new doctor. I can't do it and enjoy my boys. I can't do it and go to church. I can't do it and have a conversation. I can't do it.
I can't think about making the plans for the burial of my baby. I can't do it and survive the daily grind. I can't do it and fight the despair that lingers so closely to my heart.
So I obsess. About my lost iPhone. I search constantly. I check out other phones every second I can. I can't even pour myself into work as many people do, because so much of my work is changing BECAUSE I'll be burying my son before the middle of May. I think about every possible place the phone could be between the kitchen counter and Grandma's house. I run through last Thursday as if it was my favorite scene in my favorite movie.
So I obsess about my iPhone. Because I cry when I see my good friend's new baby pictures. Doesn't take away my happiness for that family... but it reminds me that I'll never bring my Everett home. He'll never lay on my lap, pink and sleeping all balled up for a picture. He won't "voluntarily" hold my finger.
So I obsess about my lost iPhone. Because I cry when I read of a high school friend's loss of an unborn child. Because I cry if sit still too long. Because even though I'm happy for a friend who just found out about her pregnancy, I'm terrified for her all at the same time. I pray-- dear God, PLEASE keep her from this pain. PLEASE give her a healthy baby. PLEASE God don't let *this* be her reality. I think of a friend who's baby has cancer and is going through chemo-- and I beg. I plead. With the ceiling to heal that precious little girl. Take these fears from her parents. Take this pain from her body. Take this stress from the family.
And damn if it all just feels pointless sometimes. The praying. The obsessing. The distractions. Because at the end of the day, when it's all quiet, it's me and Everett. Laying in the bed (or on floor between the boys), feeling him kick and roll. Hoping somehow it never stops. Hoping against all reality that God will 'show off' and use us to show his power instead of his love. I lay there wondering if our marriage will survive this awful reality that looms before us as I feel myself withdrawing from anyone and everyone because it's too painful to engage emotionally face to face. I wonder if the office will survive my absence. I wonder if I will create the financial ruin of our family. And then I wonder if I'll ever find my iPhone. Because I can't go any further into my hurt at that point.
So I obsess. Over my lost iPhone. Because otherwise, I can't survive this painful reality..
Saturday, February 4, 2012
And where there is mixed hope, there is always fear.
This week was probably as normal as it's going to get. Work. Boys. Fights. Overall lack of sleep. Three nights on the floor in the boys' room. Work. Losing a phone. Without insurance. You know, normal, everyday life. No major reminders of Everett. Pushing it out of the brain. Just.... forgetting as long I can. Without doctor's appointments, it's a lot easier. We have another one (doctor's appointment) Tuesday. With an ultrasound. I'm mixed bag on this one.
We chose to stop the genetic testing with the basic genetic scan and the screenings that are normally done. Nothing. We chose not to do the microarray that would determine if there was a small chromosomal imbalance-- a deletion or transmutation-- that could cause Everett's problems. Or if could be an inherited chromosomal defect. We talked and talked about it, but nothing that could be found would change anything. It doesn't increase the risk of another pregnancy ending in tragedy. It doesn't particularly influence the boys in any way-- not that can be changed, at least. In the future, if we choose to have another baby, we'll do ALL the testing. And we'll make sure that the boys do as well. That's all we can do. No name. No syndrome. No .... explanation is going to change anything. And there's enough financial strain in the future without adding to it with tests to assuage curiosity. It won't change anything.
The mixed emotions come from... wondering. Wondering why we're doing another ultrasound. Do we just monitor his.... development? Do we just monitor for the heck of it while he's moving? What's the point? Even if the VSD improves in-utero, there are so many other complications that it wouldn't matter much. Is there even a chance of improvement? And if there is, ...will it really be an improvement? One conversation I had a week or so ago sticks with me. When discussing a friend's experience, an answer to a very hard question for a family faced with incredible tragedy of two children, one child who barely existed, but lived several years with monstrous amounts of medical intervention and one who lived only hours after birth, a father responded with much wisdom: there are some things worse than death. And what if that's what we learn if there are .... 'improvements'? Do we learn that there are some things worse than death? Do you hope for improvements? Or do you just hope for the end? What on earth do you hope for? And how do you hope for either? Or do you hope for anything at all?
This week will be anything but normal. Or I guess just a new part of normal. The reminders. The times you can't just.... forget. Or pretend to. Waiting for the visit on Tuesday. Driving back down. Spending another $4 to park your car to be reminded visually and medically that Everett's life will be too short. Or to be told that it will be ...something worse than death. There will be much judgment over that thought, I'm sure. But... unless you've really looked into the ultrasound face of your little boy.... and seen the fluid on his brain, parts of his brain missing, watched his blood flow without much pattern in his heart, or seen the bubble of intestine in his lungs-- watched him curl himself into such a tiny little ball that the medical folks comment on it every time-- you have to think it: there are some things worse than death. And improvements, without complete healing, would create just that: existence. And is that really life? Could I handle that? Are we willing to give up everything, including so much of the little boys we have now that are completely healthy? Could our marriage survive that? Could our finances hold up to that? Who thinks that?!?! And better yet, what kind of mother WRITES that about her baby? How do you hope it will all just be .... over?
And yet, how do you not hope for improvements? How do you not hope to hold your baby for years? How do you not hope for something positive in the ultrasound? How do you not hope to have him recognize you? How do you not hope he can feel you love him? How do you not want something more?
But how can you? How do you wish that on your two wonderful little boys? How do wish that on your husband? How do you wish that on your family? How do you wish that on your life? I am reminded, some things are worse than death. Some things are harder than death. Some things. Some things create mixed hopes. And where there is mixed hope, there is always fear.
And yet, I still want to hold him. I still want a live delivery. I still want him to see his mama's face and know.... KNOW how much she loves him. I want him to KNOW how much we wanted him in our family. I want him to KNOW. I want him to FEEL my love. And I don't want him to feel anything else. I don't want him to gasp for air, or ache in pain, drown in his own chest fluid. I don't want him to feel anything but love.
And I'm not sure, with mere improvements, I can assure him of that. I'm not sure with improvements that he will feel my love, but rather wonder where his protection is? I'm not sure that if I cannot assure him a life free of constant struggle that I can say I love him the way a mother should.
So how do you hope? And what do you hope for? How do you wait for an ultrasound without expectation of something? How do you just... wait?
We chose to stop the genetic testing with the basic genetic scan and the screenings that are normally done. Nothing. We chose not to do the microarray that would determine if there was a small chromosomal imbalance-- a deletion or transmutation-- that could cause Everett's problems. Or if could be an inherited chromosomal defect. We talked and talked about it, but nothing that could be found would change anything. It doesn't increase the risk of another pregnancy ending in tragedy. It doesn't particularly influence the boys in any way-- not that can be changed, at least. In the future, if we choose to have another baby, we'll do ALL the testing. And we'll make sure that the boys do as well. That's all we can do. No name. No syndrome. No .... explanation is going to change anything. And there's enough financial strain in the future without adding to it with tests to assuage curiosity. It won't change anything.
The mixed emotions come from... wondering. Wondering why we're doing another ultrasound. Do we just monitor his.... development? Do we just monitor for the heck of it while he's moving? What's the point? Even if the VSD improves in-utero, there are so many other complications that it wouldn't matter much. Is there even a chance of improvement? And if there is, ...will it really be an improvement? One conversation I had a week or so ago sticks with me. When discussing a friend's experience, an answer to a very hard question for a family faced with incredible tragedy of two children, one child who barely existed, but lived several years with monstrous amounts of medical intervention and one who lived only hours after birth, a father responded with much wisdom: there are some things worse than death. And what if that's what we learn if there are .... 'improvements'? Do we learn that there are some things worse than death? Do you hope for improvements? Or do you just hope for the end? What on earth do you hope for? And how do you hope for either? Or do you hope for anything at all?
This week will be anything but normal. Or I guess just a new part of normal. The reminders. The times you can't just.... forget. Or pretend to. Waiting for the visit on Tuesday. Driving back down. Spending another $4 to park your car to be reminded visually and medically that Everett's life will be too short. Or to be told that it will be ...something worse than death. There will be much judgment over that thought, I'm sure. But... unless you've really looked into the ultrasound face of your little boy.... and seen the fluid on his brain, parts of his brain missing, watched his blood flow without much pattern in his heart, or seen the bubble of intestine in his lungs-- watched him curl himself into such a tiny little ball that the medical folks comment on it every time-- you have to think it: there are some things worse than death. And improvements, without complete healing, would create just that: existence. And is that really life? Could I handle that? Are we willing to give up everything, including so much of the little boys we have now that are completely healthy? Could our marriage survive that? Could our finances hold up to that? Who thinks that?!?! And better yet, what kind of mother WRITES that about her baby? How do you hope it will all just be .... over?
And yet, how do you not hope for improvements? How do you not hope to hold your baby for years? How do you not hope for something positive in the ultrasound? How do you not hope to have him recognize you? How do you not hope he can feel you love him? How do you not want something more?
But how can you? How do you wish that on your two wonderful little boys? How do wish that on your husband? How do you wish that on your family? How do you wish that on your life? I am reminded, some things are worse than death. Some things are harder than death. Some things. Some things create mixed hopes. And where there is mixed hope, there is always fear.
And yet, I still want to hold him. I still want a live delivery. I still want him to see his mama's face and know.... KNOW how much she loves him. I want him to KNOW how much we wanted him in our family. I want him to KNOW. I want him to FEEL my love. And I don't want him to feel anything else. I don't want him to gasp for air, or ache in pain, drown in his own chest fluid. I don't want him to feel anything but love.
And I'm not sure, with mere improvements, I can assure him of that. I'm not sure with improvements that he will feel my love, but rather wonder where his protection is? I'm not sure that if I cannot assure him a life free of constant struggle that I can say I love him the way a mother should.
So how do you hope? And what do you hope for? How do you wait for an ultrasound without expectation of something? How do you just... wait?
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