Days get easier. Days get shorter. And it feels as though life might find a normal pace. Normal will indeed have set backs. All 'normals' do. No matter your "normal" setbacks, you always have two choices: give in and give up or grow up and go on. Most of us will always choose to go on, because we simply don't have a choice. We may certainly want to give in and give up, but unless there's some benevolent soul paying your bills or you've made your millions and no longer have responsibilities to any one for anything and you have no relationships to maintain and/or grow, there's just not a choice to wallow indefinitely. Or you can at the expense of yourself and others. Whatever you choose to have for your normal is what you get.
Normal is continually new when you face so much uncertainty. I find that myself in a place where I love my boys more deeply, more unselfishly, and more intensely than I did before. I find that I have more compassion, I have more patience, I have more desire to teach them instead of instruct them. I typically have little patience, expect obedience even when clear directions are not given. I find that despite having fantastic intuition, my boys are not mindreaders (surprise, surprise, right ladies?). I find myself even more excited that I get to be home with the boys two days a week. I look forward to school time. I look forward to just hanging out with them. Hugs. Spanish. "Yunch". Dark chocolate "nimanims" for treats. Bounce House. Park. Kisses. Snuggles. MORE Hugs. The boys seem to be a bigger source of joy for me. This is a new normal.
I find myself more... sentimental. I'm not one for sentimentality, most of the time. I somehow have missed-- or possibly purposefully lost-- that sentimental thing that most women and moms have. If it clutters my house, I don't particularly want it. If we have more than 2 of them, who needs another one? I couldn't see spending money to have someone take pictures of me while I looked a bit like a beached beluga whale. Or overweight sea cow as I typically refer to myself during pregnancy. And since I've been pregnant for like 2 1/2 years, I haven't taken many pictures. I couldn't see taking professional pictures of the boys for every single occasion and season that came up. I don't typically cry. Like. Ever. And heaven help the poor soul who wanted to be in the delivery room with me, because it wasn't happening. My moment. Not yours. So this new desire for family portraits and maternity shots and a professional photographer IN the delivery room is absolutely new. I cry (at least on the inside) when I see a tiny baby. I cry (at least on the inside) with every little internal wrestling move from Everett. I find myself wanting to clutter up our house with family pictures and wanting to print the hundreds of pictures I've taken of the boys over the years. I still have no desire to keep every sheet of 'school' paper. Like when Aiden wrote his first 'c' or 'x'. At least I've maintained some sanity :) I find these new emotions disconcerting. Unleveling. And, for many reasons, I had tried desperately over many years to remove the emotions in me that were once prevalent and try to maintain an even keel, removed from personal touch. Funny what a baby who's going to die will do to change that.
I find myself in a place that is often murky and confusing. Where there is so much that is unclear. Where there is so much I can't understand. Where love and science and faith and stats get all cluttered together with common sense and... none of it makes any sense at all. Ugh. But we, as people, try to organize events so that there is purpose, there is 'meaning', and there is (usually) something spiritual. And I battle with that. It's EASY to take the 'religious road' and just assure yourself that "God's gotta plan". It's HARDER to admit you're not sure if you believe that. In front of anyone who wants to read it. It's HARDER to admit that sometimes there is nothing fantastic that comes when shit just happens. It's HARDER to grow up and go on when you choose to face what's real in your life and not coat it with religious generosities and pleasantries. It's EASY on the back side of pain to throw your hands up and preach your lessons of love and compassion and great change. It's EASY on the restoration side of grief to tell your story with an objective touch and hindsight. It's damn near IMPOSSIBLE to wade through the shit while you're in it. And, as much as I hate it, this is NOT a new normal for me. Seems like once one pile of shit becomes compost in a flower bed, I step in a new pile. Always a little deeper than before.
Normal is never easy. Life never is. Not even sure it was 'meant' to be. With each day, there are choices to be made, no matter what pile of shit you've stepped in, been thrown into, or created yourself. There are choices to be made. We get to decide if we wallow or climb out. We get to decide if we self destruct or we reconstruct. We get to decide how long the shit will stink up our lives. How long it will negatively affect ourselves, our spouses, our children, our friends, our faith. We can't always change the piles in front of us-- and we will never change the ones behind us-- but will it be compost for a flower bed or will it be poisonous gas that kills you slowly? Those are our choices.
Those are OUR choices. THAT is how we create a new normal. We adapt. We face the hurt. We cry and scream and bitch if we need to. Punch, kick, or run. You face honestly what is on your heart, fear of judgment and condemnation abound, but you face your heart. You face your hurt. And you decide what you want normal to look like. You understand that choosing compost over gas doesn't take the stench away, but that from compost comes life. New life. That hasn't seen the light of day yet. And you embrace it. All of it. The pain. The confusion. The total loss of control. The unforgiveness that rests in your heart. The longing for acceptance that never came. The devastation of bad decisions. The contempt for God. The selfishness that traps you in poor relationship habits. The grief that paralyzes you. The anger than boils within you. The feeling of inadequacy. The longing for hope and finding none. You face it. Honestly. You own up to it. And you grow up. Then and only then do you feel the freedom of going on with life. The sting of loss, unfaithfulness (marital, spiritual, relational), financial ruin from sheer stupidity or greed, dreams that never came true, and countless other piles of shit may litter our past or present. And the evidence of them is all around. In how you find your normal. How you find yourself after 'yourself' has been lost. It's what you do with your shit that creates your normal.
We will never forget Everett. I will always remember his due date. I will always remember thinking "Is that his foramen magnum? Where's his brain?" I will always remember that mess of a consultation room when I was first told something was wrong. I will always remember the devastation in Keith's voice and face. I will always remember what's it like to grow a baby that will likely not survive. And it will always hurt. It will always be painful. The next year or so will be littered with meltdowns, breakdowns, questions, and heartaches. But it doesn't mean my reality has to be based on the pain and hurt. I get to choose to embrace this life. Mine and his. I get to choose to create compost out of shit. I choose to let the sun shine down on it. I choose to air it out for all to see. Doesn't take away the stench, but the end result is much different than breathing in its poisonous byproduct.
Tuesday, January 31, 2012
Sunday, January 29, 2012
You plead with the ceiling for anything....
Sometimes, it all just builds up. I can only be strong and separate myself from the reality of my life for so long. Saturday, it just seemed like the world came crashing down around me. All week I had been doing well. Facing the giant. Peaceful.
And then Thursday I had a doctor's appointment. Apparently no one actually reads your chart before they come in to see you. I don't expect it from the nurses. Or the poor little lab girl of the day. It wasn't her fault that she didn't know. Most ladies that sit in her chair at 6 months pregnant are excited, planning nurseries, gathering baby clothes. So when asked the standard questions you get asked by anyone-- "OOO, when are you due? What are you having? You must be so excited! What do you have at home? O, 3 little boys! That's going to be so much fun!!" Then you watch the blood and color fade from her face when you tell her. You watch her want to crawl in a hole as you gently explain that 2 weeks ago you found out that you would indeed have 3 little boys, but the littlest baby-- the unborn baby-- has massive complications internally and will not make it. But you are choosing to carry him to term. You watch her heart sink.... and she stabs you a little in her embarrassment, leaving you a week long reminder of that moment in the form a gigantic bruise in your elbow. And your wall of pseudo-strength is temporarily damaged. Then you move on to the room to wait for the doctor, and you assume whoever is seeing you read the file. Read the notes.
But when she walks in, she has no idea. She asks super cheerily (in her typical fashion) "How are you feeling? Things going well?" And you watch her gather herself as you say politely, "I'm not sure if you read my file" (she interjects, I thought I did but nothing stuck out really majorly, let me get my computer) and you just say as she slinks back in with the computer, "Two weeks ago we found out that my baby, Everett, has multiple defects (you list the big ones in the medical terms she recognizes) and will likely not make it to his due date, but if he does, he will likely not survive the trauma of delivery." While you hold yourself together, you watch her (professionally and personally) fall apart and quickly regain herself. You watch the tears well up. While you hold your own back. You steady your voice and ask the questions you were instructed to ask about delivery at the local hospital versus the baby factory downtown. She offers all sorts of condolences. She admires your strength (to which you laugh internally because inside you're absolutely losing your mind).
You leave, go back to your office. Breathe a sigh of relief-- you won't have to talk about it again today. And then the person you're interviewing wants a little better understanding of what's going on. And, as if you're discussing a study you read in a medical journal, you explain it. Again. This time, keeping yourself out of the equation completely. Stating the facts only. Just... get it over with. Help her understand what might be expected of her and why if I take a leave of absence in the office. Totally impersonal.
Friday, you basically avoid the public. The boys make a great excuse. You just go about your business. But yesterday weighs heavily on your heart. And all the tears you want to cry. But can't. Because you can't fall apart everyday. There's too much at stake. Including your own health and sanity. And you wonder all day about your health and Everett's health because you just don't feel.... 'right'. Exhausted doesn't begin to cut it. Sharp pains come and go, a heaviness in your stomach just... weighs down on your pelvis as you stand. And you wonder... Everett.... are you ok? Cold water. Still no movement. M&Ms. Still no movement. Cold tea. Still no movement. Everything in you sinks. Just like you watched happen twice on Thursday. You lay down. Frozen in fear. Begging for.... you have no idea what. Just.... pleading with the ceiling for anything. Finally. A kick. Small. But a kick.
Saturday. Saturday was even worse. Public is a necessity because you want to keep the schedule normal. Park. Trader Joe's. The "knowing" smile of moms with three young kids that find you. The friendly check out clerk who asks the normal questions. You answer politely, holding back the tears that sit just behind your eyes. Your husband just smiles at you. You get in the car and head home. The exhaustion hits so hard you can barely move. Finally you just give in. You lay down in the room with your little boy, on the floor, again, just so you can rest. And you rest... for hours. But it doesn't feel like it's enough. There hasn't been much movement today and you feel incredibly crappy. And again, you plead with the ceiling for anything. Anything. You take the kids to the school sponsored 'parents night out' and then head to Target for the few things you need. Familiar faces. Warm embraces. And you hold back the tears you've been fighting all day. Because you can't just fall apart all the time.
You go home and play an embarrassing number of rounds of "word score" on your phone because its the best distraction you've found yet. And you plead again with the ceiling. What's wrong? What are these sharp pains? Is Everett hurting, because God, you don't want him to feel an ounce of pain. You don't want him to struggle for anything. Can he feel you loving him? Can he feel you wondering with every moment if he's okay? Or does he wonder why you don't love him? Why you won't help him stop hurting? Why you won't end his pain? Why you're not protecting him? Can he feel the anxiety when you don't feel him? You beg. You plead. With the ceiling. Playing that stupid word game. And finally... a kick. Another. Small. Few and far between. But a kick. And this time, you pray. Please don't let him be hurthing, God. It's your only wish. It's your only wish. Don't let him hurt.
Somehow you rest, despite your emotional exhaustion and the sharp pains in your abdomen and back. Sleep might be an overstatement, but you rest.
Sunday seems a little easier. More movement, so there's less anxiety. Still, the sharp pains. More friendly smiles and warm embraces. It seems easier, for some reason. Almost.
Takes forever to put the boys to bed. You just decide to lay down with them. After an hour, still not asleep. You get up to give up. And then. Keith starts playing his guitar. Eric Clapton. You can't hold it together anymore. Every once of strength you had over the last week just melted away. With two chords. You stand, for a minute, just outside the boys' door, silent tears streaming down your face. You can't walk in to your room where Keith is playing, so you just go curl up between their beds. Somehow, they feel you sobbing, not understanding. But they know. They just... know. And they go to sleep. While you listen to "Tears in Heaven." And sob. And you wonder, Everett... do you know I'm weeping for you? Do you know these tears are for you? Everett, do you know how much your mama wanted to watch you learn to walk? Do you know how much I wanted to rock you to sleep? Do you know how much she was looking forward to the three of you wrestling in the yard? Everett, do you know my tears are for you?
And you plead with the ceiling.
And then Thursday I had a doctor's appointment. Apparently no one actually reads your chart before they come in to see you. I don't expect it from the nurses. Or the poor little lab girl of the day. It wasn't her fault that she didn't know. Most ladies that sit in her chair at 6 months pregnant are excited, planning nurseries, gathering baby clothes. So when asked the standard questions you get asked by anyone-- "OOO, when are you due? What are you having? You must be so excited! What do you have at home? O, 3 little boys! That's going to be so much fun!!" Then you watch the blood and color fade from her face when you tell her. You watch her want to crawl in a hole as you gently explain that 2 weeks ago you found out that you would indeed have 3 little boys, but the littlest baby-- the unborn baby-- has massive complications internally and will not make it. But you are choosing to carry him to term. You watch her heart sink.... and she stabs you a little in her embarrassment, leaving you a week long reminder of that moment in the form a gigantic bruise in your elbow. And your wall of pseudo-strength is temporarily damaged. Then you move on to the room to wait for the doctor, and you assume whoever is seeing you read the file. Read the notes.
But when she walks in, she has no idea. She asks super cheerily (in her typical fashion) "How are you feeling? Things going well?" And you watch her gather herself as you say politely, "I'm not sure if you read my file" (she interjects, I thought I did but nothing stuck out really majorly, let me get my computer) and you just say as she slinks back in with the computer, "Two weeks ago we found out that my baby, Everett, has multiple defects (you list the big ones in the medical terms she recognizes) and will likely not make it to his due date, but if he does, he will likely not survive the trauma of delivery." While you hold yourself together, you watch her (professionally and personally) fall apart and quickly regain herself. You watch the tears well up. While you hold your own back. You steady your voice and ask the questions you were instructed to ask about delivery at the local hospital versus the baby factory downtown. She offers all sorts of condolences. She admires your strength (to which you laugh internally because inside you're absolutely losing your mind).
You leave, go back to your office. Breathe a sigh of relief-- you won't have to talk about it again today. And then the person you're interviewing wants a little better understanding of what's going on. And, as if you're discussing a study you read in a medical journal, you explain it. Again. This time, keeping yourself out of the equation completely. Stating the facts only. Just... get it over with. Help her understand what might be expected of her and why if I take a leave of absence in the office. Totally impersonal.
Friday, you basically avoid the public. The boys make a great excuse. You just go about your business. But yesterday weighs heavily on your heart. And all the tears you want to cry. But can't. Because you can't fall apart everyday. There's too much at stake. Including your own health and sanity. And you wonder all day about your health and Everett's health because you just don't feel.... 'right'. Exhausted doesn't begin to cut it. Sharp pains come and go, a heaviness in your stomach just... weighs down on your pelvis as you stand. And you wonder... Everett.... are you ok? Cold water. Still no movement. M&Ms. Still no movement. Cold tea. Still no movement. Everything in you sinks. Just like you watched happen twice on Thursday. You lay down. Frozen in fear. Begging for.... you have no idea what. Just.... pleading with the ceiling for anything. Finally. A kick. Small. But a kick.
Saturday. Saturday was even worse. Public is a necessity because you want to keep the schedule normal. Park. Trader Joe's. The "knowing" smile of moms with three young kids that find you. The friendly check out clerk who asks the normal questions. You answer politely, holding back the tears that sit just behind your eyes. Your husband just smiles at you. You get in the car and head home. The exhaustion hits so hard you can barely move. Finally you just give in. You lay down in the room with your little boy, on the floor, again, just so you can rest. And you rest... for hours. But it doesn't feel like it's enough. There hasn't been much movement today and you feel incredibly crappy. And again, you plead with the ceiling for anything. Anything. You take the kids to the school sponsored 'parents night out' and then head to Target for the few things you need. Familiar faces. Warm embraces. And you hold back the tears you've been fighting all day. Because you can't just fall apart all the time.
You go home and play an embarrassing number of rounds of "word score" on your phone because its the best distraction you've found yet. And you plead again with the ceiling. What's wrong? What are these sharp pains? Is Everett hurting, because God, you don't want him to feel an ounce of pain. You don't want him to struggle for anything. Can he feel you loving him? Can he feel you wondering with every moment if he's okay? Or does he wonder why you don't love him? Why you won't help him stop hurting? Why you won't end his pain? Why you're not protecting him? Can he feel the anxiety when you don't feel him? You beg. You plead. With the ceiling. Playing that stupid word game. And finally... a kick. Another. Small. Few and far between. But a kick. And this time, you pray. Please don't let him be hurthing, God. It's your only wish. It's your only wish. Don't let him hurt.
Somehow you rest, despite your emotional exhaustion and the sharp pains in your abdomen and back. Sleep might be an overstatement, but you rest.
Sunday seems a little easier. More movement, so there's less anxiety. Still, the sharp pains. More friendly smiles and warm embraces. It seems easier, for some reason. Almost.
Takes forever to put the boys to bed. You just decide to lay down with them. After an hour, still not asleep. You get up to give up. And then. Keith starts playing his guitar. Eric Clapton. You can't hold it together anymore. Every once of strength you had over the last week just melted away. With two chords. You stand, for a minute, just outside the boys' door, silent tears streaming down your face. You can't walk in to your room where Keith is playing, so you just go curl up between their beds. Somehow, they feel you sobbing, not understanding. But they know. They just... know. And they go to sleep. While you listen to "Tears in Heaven." And sob. And you wonder, Everett... do you know I'm weeping for you? Do you know these tears are for you? Everett, do you know how much your mama wanted to watch you learn to walk? Do you know how much I wanted to rock you to sleep? Do you know how much she was looking forward to the three of you wrestling in the yard? Everett, do you know my tears are for you?
And you plead with the ceiling.
Wednesday, January 25, 2012
So, Like SuperWhy, I look in a Book
Everyday seems a little more like life will go on. Everyday seems like we've not been abandoned. Everyday is filled with the loving arms of prayer surrounding us. We are incredibly appreciative. I've been trying to take a short moratorium on writing to help my heart settle. I've prayed. Probably for the first time in about 2 weeks.
Shame on me, I know. I should've hit my knees in prayer immediately. I should've cried out to heaven to heal my baby boy and create a miracle for the glory of heaven to be displayed. But that's not what my heart felt in those weeks. That's not what my heart was screaming the moment we found out.
My heart was pounding. My eyes were crying. And God was the last thing on my mind. My husband, sitting next to me, fighting tears, demanding answers, fighting for hope, losing the battle of the tears. That's what was on my mind. Hearing his fear. Hearing his hurt. Hearing and feeling his heart break. That's what I was thinking about. Feeling my whole body go numb. Feeling a cloud set in. Feeling the blood drain from my head. Feeling nothing. Feeling everything. Simultaneously. No, prayers weren't my first thought. God was an afterthought.
And as people began to link me to others who have endured similar things and as these people tell their story of healing (in some cases), share their stories of hope (sometimes), and tell of the graciousness of God's goodness (almost always), I found myself physically nauseated. I found myself silently screaming "What is WRONG with these people?!?!" And as the stories of blessings from the tragedies piled up, and as the well wishes poured in, I found myself asking "What the hell is wrong WITH ME?!?!" Why don't I feel blessed? Why don't I feel like God has chosen me to do something great? Why don't I feel like Everett's life should have eternal significance? Why don't I feel like God's purpose is greater than anything I can understand? Why do I feel like I'm the only Christian mom who thinks this sucks? Why am I the only Christian who thinks it's ridiculous to hear terrible, life changing, life STEALING news and throw my hands up in praise to the God who's ways are hidden to me?!?!?!
Am I that weird?
Or has RELIGION altered our perspective God? Has RELIGION somehow confused us... programmed us to not feel human? Do we somehow think we are to be so "spiritual" that it's inappropriate, nay sinful, to have feelings?
So, like SuperWhy (you understand if you have kids), when I have questions, I look in a book. And this is what JESUS has to say about attitudes(according to Matthew 5 in The Message Bible):
You're blessed when you're at the end of your rope. With less of you, there is more of God and his rule.
You're blessed when you feel you've lost what is most dear to you. Only then can you be embraced by the One most dear to you.
You're blessed when you get your inside world-- your mind and your heart-- put right. Then you can see God in the outside world.
So in other words-- ya know what? Shit happens. (We decided after Aiden continually painted walls, doors, and the like with his poop, that poop, in inappropriate, hard to clean places was shit. Plain and simple) In this life, there will be shit. It will make you feel like there's no hope. It will make you feel like you're all alone. It will make your heart get hurt. And, as crazy as it sounds, that's a good place to be... if you'll just ALLOW those things to be.
Because, Jesus goes on, you should:
Keep an open house. Be generous with your lives. By opening up to others, you'll prompt people to open up with God, this generous Father in heaven.
He continues:
In prayer there is a connection between what God does and what you do. You can't get forgiveness from God, for instance, without also forgiving others. If you refuse to do your part, you cut yourself off from God's part. When you practice some appetite-denying discipline to better concentrate on God, don't make a production out of it. It might turn you into a small-time celebrity, but it won't make you a saint. If you 'go into training' inwardly, act normal outwardly. Shampoo and comb your hair, brush your teeth, wash your face. (my emphasis) GOD DOESN'T REQUIRE ATTENTION-GETTING DEVICES. He won't overlook you.
Sometimes it feels like Christianity has become such a RELIGION that the honesty of being a Christ follower is lost. Sometimes I feel like Christians somehow think that spouting scripture and praising God in the midst of a devastating crisis makes them more Christ like. Really? Because Jesus said, as he waited to be betrayed, beaten, and crucified, "Lord take this away" (ie, I don't really want to go through this, can't you see that?!?!?). And then as he hung dying, in unimaginable pain on the cross in front of EVERYONE TO SEE, he YELLS OUT to God "WHY have you left me alone?" (ie, didn't I do exactly what you said? Aren't I your son? Don't you love me? ... I'm at the end of MY rope. I'm at the end of MY strength... and WHERE are you, God who can do all things?)
You see, when Jesus was facing something he *felt* was insurmountable, he was honest about it. He didn't 'religiousify' it. He cried out, brokenhearted, mad, irritated, and feeling alone: What's your problem, Father? won't you help me? Where are you now?
Not exactly the way we've been 'programmed' to respond in crisis situations, is it? Somehow because we have the end of the Story, we're supposed to jump to James's instructions and go ahead and "count it all joy". We've been programmed to skip the pain because pain is somehow sinful. We've been programmed to "praise (him) in the storm". We've been somehow assured that feeling alone is un-Christian. That feeling hopeless is wrong. That it is denying the God we proclaim. That just because Jesus is our "Lord and Savior" we will go through trials but we should not go through pain. We should not go through emptiness. Because God is in control. Because God is with us.
Funny. Jesus did.
And he was perfect.
So back to the original paragraph...
I've been able to pray. For the first time in two weeks. But still really only for the protection of my boys, that no evil or harm will come to them in any form. This has been my bedtime prayer for a long, long time... and, as many of you could NEVER imagine (or at least not publicly admit), I felt a little betrayed by God. I felt like it didn't matter what I prayed for, God's gonna do whatever the hell he wants to anyway, right? Because He's in control. Because His ways are higher than our ways. Not because I was mad at God. But because I felt alone. Like my prayers didn't matter. Because when you feel alone, the last thing you want to do is be thankful for anything. Or ask for anything. At least *I* don't. A real person. Who thinks it's okay to know shit happens. Who thinks it's okay to yell at God and wonder why he's not here. To ask why his stupid plan crushed our family. Because I think it's normal, even in a Christian, to embrace a little of reality. Because I think that blindly praising God even you don't feel like it is sorta like one of those "attention getting devices". Because I think that putting on the "Christian" robe and walking around in constant joy no matter your circumstance is a little like being brainwashed and dipped in a cultish culture with an alternate reality that makes you a small time religious celebrity. But it won't make you a saint.
Because I'm not so sure we're supposed to be so out-of-tune with other people that we can't share the hurts. That we can't share the pain. That we can't *share* the humanity that links us all; the thing that we as religious Christians so diligently work to get rid of so we can be more "Christ like" (ie Baptist, particularly Southern Baptist). How are we to "open our houses (and our hearts) and live generously" to other people if we close them off? How are we supposed to "set our hearts right" if we actively deny what we feel in hard, painful situations? How are we supposed to support each other and reach out to each other if we make-believe that just because God is in control that it's all gonna be okay? How are we supposed to connect with each other if we isolate ourselves in our religious tradition? How are we supposed to teach honesty if we aren't honest with ourselves?
Ooo, or good "God question": How are we supposed to allow God to grow within us if we don't give him the room to do so? If we don't yell out "Where are you?" If we don't plead "Please make this go away"? If we don't give God room to show up because we're too busy being "Christians"? If we don't allow the hurt, the pain, the unrest, we'll never experience the peace of prayer. Strong in faith, in my brain, has little to do with outspoken praises in times of trouble. Has little to do with "counting it all joy". Strong faith, to me, means being able to admit you're hurt, you feel alone, and that you don't particularly want to go on; ...but in the midst of it, you know you're not alone... because you still cry out to God-- mad, hurt, and at the end of your rope.
And God will show up. Not always the way you want him to. Not always when you want him to. And not always in a way you can see. And sometimes not even a way you can feel at that moment. But if you give Him a chance, he'll show up. In a real way. Maybe not in a miracle. Maybe not in financial success. Maybe not in a beautiful home. Maybe not in a perfectly happy marriage. Maybe not in perfectly obedient children. Maybe not in resurrecting life.
But in peace. In the prayers of others. In the ability to pray again.
Because only in those things can you make it through the impossible reality of knowing your son will not live. With every kick. With every flip. Only in those things do you find the strength to go on. That's where God shows up when you're waiting for your baby to die-- whether it be as a miscarriage or in a stillbirth. That's where God shows up in real life. At least for me.
Shame on me, I know. I should've hit my knees in prayer immediately. I should've cried out to heaven to heal my baby boy and create a miracle for the glory of heaven to be displayed. But that's not what my heart felt in those weeks. That's not what my heart was screaming the moment we found out.
My heart was pounding. My eyes were crying. And God was the last thing on my mind. My husband, sitting next to me, fighting tears, demanding answers, fighting for hope, losing the battle of the tears. That's what was on my mind. Hearing his fear. Hearing his hurt. Hearing and feeling his heart break. That's what I was thinking about. Feeling my whole body go numb. Feeling a cloud set in. Feeling the blood drain from my head. Feeling nothing. Feeling everything. Simultaneously. No, prayers weren't my first thought. God was an afterthought.
And as people began to link me to others who have endured similar things and as these people tell their story of healing (in some cases), share their stories of hope (sometimes), and tell of the graciousness of God's goodness (almost always), I found myself physically nauseated. I found myself silently screaming "What is WRONG with these people?!?!" And as the stories of blessings from the tragedies piled up, and as the well wishes poured in, I found myself asking "What the hell is wrong WITH ME?!?!" Why don't I feel blessed? Why don't I feel like God has chosen me to do something great? Why don't I feel like Everett's life should have eternal significance? Why don't I feel like God's purpose is greater than anything I can understand? Why do I feel like I'm the only Christian mom who thinks this sucks? Why am I the only Christian who thinks it's ridiculous to hear terrible, life changing, life STEALING news and throw my hands up in praise to the God who's ways are hidden to me?!?!?!
Am I that weird?
Or has RELIGION altered our perspective God? Has RELIGION somehow confused us... programmed us to not feel human? Do we somehow think we are to be so "spiritual" that it's inappropriate, nay sinful, to have feelings?
So, like SuperWhy (you understand if you have kids), when I have questions, I look in a book. And this is what JESUS has to say about attitudes(according to Matthew 5 in The Message Bible):
You're blessed when you're at the end of your rope. With less of you, there is more of God and his rule.
You're blessed when you feel you've lost what is most dear to you. Only then can you be embraced by the One most dear to you.
You're blessed when you get your inside world-- your mind and your heart-- put right. Then you can see God in the outside world.
So in other words-- ya know what? Shit happens. (We decided after Aiden continually painted walls, doors, and the like with his poop, that poop, in inappropriate, hard to clean places was shit. Plain and simple) In this life, there will be shit. It will make you feel like there's no hope. It will make you feel like you're all alone. It will make your heart get hurt. And, as crazy as it sounds, that's a good place to be... if you'll just ALLOW those things to be.
Because, Jesus goes on, you should:
Keep an open house. Be generous with your lives. By opening up to others, you'll prompt people to open up with God, this generous Father in heaven.
He continues:
In prayer there is a connection between what God does and what you do. You can't get forgiveness from God, for instance, without also forgiving others. If you refuse to do your part, you cut yourself off from God's part. When you practice some appetite-denying discipline to better concentrate on God, don't make a production out of it. It might turn you into a small-time celebrity, but it won't make you a saint. If you 'go into training' inwardly, act normal outwardly. Shampoo and comb your hair, brush your teeth, wash your face. (my emphasis) GOD DOESN'T REQUIRE ATTENTION-GETTING DEVICES. He won't overlook you.
Sometimes it feels like Christianity has become such a RELIGION that the honesty of being a Christ follower is lost. Sometimes I feel like Christians somehow think that spouting scripture and praising God in the midst of a devastating crisis makes them more Christ like. Really? Because Jesus said, as he waited to be betrayed, beaten, and crucified, "Lord take this away" (ie, I don't really want to go through this, can't you see that?!?!?). And then as he hung dying, in unimaginable pain on the cross in front of EVERYONE TO SEE, he YELLS OUT to God "WHY have you left me alone?" (ie, didn't I do exactly what you said? Aren't I your son? Don't you love me? ... I'm at the end of MY rope. I'm at the end of MY strength... and WHERE are you, God who can do all things?)
You see, when Jesus was facing something he *felt* was insurmountable, he was honest about it. He didn't 'religiousify' it. He cried out, brokenhearted, mad, irritated, and feeling alone: What's your problem, Father? won't you help me? Where are you now?
Not exactly the way we've been 'programmed' to respond in crisis situations, is it? Somehow because we have the end of the Story, we're supposed to jump to James's instructions and go ahead and "count it all joy". We've been programmed to skip the pain because pain is somehow sinful. We've been programmed to "praise (him) in the storm". We've been somehow assured that feeling alone is un-Christian. That feeling hopeless is wrong. That it is denying the God we proclaim. That just because Jesus is our "Lord and Savior" we will go through trials but we should not go through pain. We should not go through emptiness. Because God is in control. Because God is with us.
Funny. Jesus did.
And he was perfect.
So back to the original paragraph...
I've been able to pray. For the first time in two weeks. But still really only for the protection of my boys, that no evil or harm will come to them in any form. This has been my bedtime prayer for a long, long time... and, as many of you could NEVER imagine (or at least not publicly admit), I felt a little betrayed by God. I felt like it didn't matter what I prayed for, God's gonna do whatever the hell he wants to anyway, right? Because He's in control. Because His ways are higher than our ways. Not because I was mad at God. But because I felt alone. Like my prayers didn't matter. Because when you feel alone, the last thing you want to do is be thankful for anything. Or ask for anything. At least *I* don't. A real person. Who thinks it's okay to know shit happens. Who thinks it's okay to yell at God and wonder why he's not here. To ask why his stupid plan crushed our family. Because I think it's normal, even in a Christian, to embrace a little of reality. Because I think that blindly praising God even you don't feel like it is sorta like one of those "attention getting devices". Because I think that putting on the "Christian" robe and walking around in constant joy no matter your circumstance is a little like being brainwashed and dipped in a cultish culture with an alternate reality that makes you a small time religious celebrity. But it won't make you a saint.
Because I'm not so sure we're supposed to be so out-of-tune with other people that we can't share the hurts. That we can't share the pain. That we can't *share* the humanity that links us all; the thing that we as religious Christians so diligently work to get rid of so we can be more "Christ like" (ie Baptist, particularly Southern Baptist). How are we to "open our houses (and our hearts) and live generously" to other people if we close them off? How are we supposed to "set our hearts right" if we actively deny what we feel in hard, painful situations? How are we supposed to support each other and reach out to each other if we make-believe that just because God is in control that it's all gonna be okay? How are we supposed to connect with each other if we isolate ourselves in our religious tradition? How are we supposed to teach honesty if we aren't honest with ourselves?
Ooo, or good "God question": How are we supposed to allow God to grow within us if we don't give him the room to do so? If we don't yell out "Where are you?" If we don't plead "Please make this go away"? If we don't give God room to show up because we're too busy being "Christians"? If we don't allow the hurt, the pain, the unrest, we'll never experience the peace of prayer. Strong in faith, in my brain, has little to do with outspoken praises in times of trouble. Has little to do with "counting it all joy". Strong faith, to me, means being able to admit you're hurt, you feel alone, and that you don't particularly want to go on; ...but in the midst of it, you know you're not alone... because you still cry out to God-- mad, hurt, and at the end of your rope.
And God will show up. Not always the way you want him to. Not always when you want him to. And not always in a way you can see. And sometimes not even a way you can feel at that moment. But if you give Him a chance, he'll show up. In a real way. Maybe not in a miracle. Maybe not in financial success. Maybe not in a beautiful home. Maybe not in a perfectly happy marriage. Maybe not in perfectly obedient children. Maybe not in resurrecting life.
But in peace. In the prayers of others. In the ability to pray again.
Because only in those things can you make it through the impossible reality of knowing your son will not live. With every kick. With every flip. Only in those things do you find the strength to go on. That's where God shows up when you're waiting for your baby to die-- whether it be as a miscarriage or in a stillbirth. That's where God shows up in real life. At least for me.
Saturday, January 21, 2012
Finding a New Normal. If it exists.
We keep searching for that moment where all is... normal. I keep waiting for something on a plate to look appealing. I wait for the nausea to be gone. I keep trying to find something *positive* to put my thoughts on. I keep looking for my brain to slow down so maybe the rest of my body can sleep without (doctor approved) help. I keep looking for a new normal.
There are, for sure, moments that I want to curl up and just.... be. But I have two little boys, a husband, and a business. I don't get that option. I don't get down time. So I keep looking for a way to find a *real* smile. A *real* laugh. I've looked in lots of places.
I thought maybe if I began to imagine what Everett would be like, I'd find comfort in that. I started thinking that he'd be a mixture of our two boys. He'd have the loving, demonstrative side of Kipton and the confident, intelligent, independent nature of Aiden. Everett would have reddish brown hair, a combination of his mama and his daddy. He'd love tractors, trains, and balls just as much as his brothers. And he'd love something new, like dinosaurs. ...But I found quickly, that the thoughts of his life that would never be only made me sad. Only made my arms ache to hold him forever.
I thought maybe if I just acted like nothing was wrong, I'd make it through the day better. There are so many things to keep me going-- the boys, Keith, the office. I'm good doing that way for about 30 minutes... then he kicks. He rolls. The nausea returns. The dizziness returns. The maternity pants fall down and the shirts roll up. And it's impossible not to remember. It's impossible not to think about it. It's impossible to act like nothing's wrong. Like all is well. Like I'm not waiting on a miscarriage.
I thought if I just pretended to be normal, normal would come. But we must find a new normal. We must figure out how to live with the constant reminders of how life has changed. We have to shift our thoughts of painting Everett's room to thoughts of planning his funeral. We shift our thoughts from budgeting for diapers and daycare to budgeting for medical expenses and the burial of our unborn son. We turn our focus from growing and building the office/bringing in a new doctor to cover and add services, to searching for someone who will, in essence, build the office for him/herself while I take a more managerial role and continue seeing my current patients. Because I don't think I can take explaining to every new patient (2 or more a week) about the life of Everett and my impending leave of absence. But the 'show' must go on.
We have to find a way to not only continue working on our marriage, but now we must protect it from the grief and withdrawal that comes in losing a child. We must figure out how to make it all work like normal, even though there's no such thing as normal anymore. We must figure out how to deal with the loss of a child. Twice. We grieve now as we find out that his little life cannot exist outside my womb, then we will again grieve as we give birth and bury his tiny body. We do our best to be normal in the midst of this mental and emotional chaos. There's no such thing as normal when this is your new life.
And yet we're making it. We're plugging along. We're tired, but breathing. We're sad, but taking it day by day. We talk about it when we can and avoid it most of the time. We make lists of things to do. We talk in brief segments of the things we need to do. We don't talk about how we feel. We don't talk about what we're thinking. We're likely too exhausted. But most of all, I think we're just trying to find normal. We're just trying to keep things steady for the boys. We're just trying to keep things steady for us. We're making a new normal. As normal as it gets.
There are, for sure, moments that I want to curl up and just.... be. But I have two little boys, a husband, and a business. I don't get that option. I don't get down time. So I keep looking for a way to find a *real* smile. A *real* laugh. I've looked in lots of places.
I thought maybe if I began to imagine what Everett would be like, I'd find comfort in that. I started thinking that he'd be a mixture of our two boys. He'd have the loving, demonstrative side of Kipton and the confident, intelligent, independent nature of Aiden. Everett would have reddish brown hair, a combination of his mama and his daddy. He'd love tractors, trains, and balls just as much as his brothers. And he'd love something new, like dinosaurs. ...But I found quickly, that the thoughts of his life that would never be only made me sad. Only made my arms ache to hold him forever.
I thought maybe if I just acted like nothing was wrong, I'd make it through the day better. There are so many things to keep me going-- the boys, Keith, the office. I'm good doing that way for about 30 minutes... then he kicks. He rolls. The nausea returns. The dizziness returns. The maternity pants fall down and the shirts roll up. And it's impossible not to remember. It's impossible not to think about it. It's impossible to act like nothing's wrong. Like all is well. Like I'm not waiting on a miscarriage.
I thought if I just pretended to be normal, normal would come. But we must find a new normal. We must figure out how to live with the constant reminders of how life has changed. We have to shift our thoughts of painting Everett's room to thoughts of planning his funeral. We shift our thoughts from budgeting for diapers and daycare to budgeting for medical expenses and the burial of our unborn son. We turn our focus from growing and building the office/bringing in a new doctor to cover and add services, to searching for someone who will, in essence, build the office for him/herself while I take a more managerial role and continue seeing my current patients. Because I don't think I can take explaining to every new patient (2 or more a week) about the life of Everett and my impending leave of absence. But the 'show' must go on.
We have to find a way to not only continue working on our marriage, but now we must protect it from the grief and withdrawal that comes in losing a child. We must figure out how to make it all work like normal, even though there's no such thing as normal anymore. We must figure out how to deal with the loss of a child. Twice. We grieve now as we find out that his little life cannot exist outside my womb, then we will again grieve as we give birth and bury his tiny body. We do our best to be normal in the midst of this mental and emotional chaos. There's no such thing as normal when this is your new life.
And yet we're making it. We're plugging along. We're tired, but breathing. We're sad, but taking it day by day. We talk about it when we can and avoid it most of the time. We make lists of things to do. We talk in brief segments of the things we need to do. We don't talk about how we feel. We don't talk about what we're thinking. We're likely too exhausted. But most of all, I think we're just trying to find normal. We're just trying to keep things steady for the boys. We're just trying to keep things steady for us. We're making a new normal. As normal as it gets.
Thursday, January 19, 2012
Do You Hear Me, God? I'm Not Ready for My Baby to Die...(My version of Psalm 38)
I may not live in Scripture Filled Wonderland, but it doesn't mean I believe that the Bible doesn't speak to my heart, my life. Just now, while reading this morning and trying to find something, anything to cling to so I don't just fall apart in my desk chair, office windows clear and open for all to see the crazy doctor sitting her chair, sobbing, Something I didn't even search out is there:
(the Message Bible version of parts of Psalm 38)
Lord, my longings are sitting in plain sight, my groans are an old story to you. My heart's about to break; I'm a burned-out case..... What I do, God, is wait for you, wait for my Lord, my God-- you will answer! ....I'm on the edge of losing it-- the pain in my gut keeps burning. I'm ready to tell my story of failure... don't dump me, God; my God, don't stand me up. Hurry and help me....
The crazy thing is, I still feel so numb. I still feel so...peaceful. Nauseous. Weak. Shaky. Exhausted. But peaceful. We talked last night about the service we want to have for Everett. We talked about trying to set up a funeral fund. All while waiting for the shower water to warm up. Like we were talking about what we had for dinner.
As I was talking to one of my long time faithful patients yesterday, the words just sounded so foreign. How can I talk with such monotony about our 'best overall option' being a preterm miscarriage with induction/delivery to follow? After his kicks have stopped. After his heart has stopped. After he's dead. And I just wait for this. Everyday. I keep a kick count in my head. I keep a record of all the times I feel... weird. Like I did before each of the other deliveries. And I wonder... is it over? Just as quickly as it began? I'm not ready. I'm not ready. Do you hear me, God??!?! I'm not ready for my baby to die. I'm not ready for my baby to die.
I never will be.
But I don't get to make that choice.
When we found out I was pregnant with Everett, we were in shock. We had been actively trying NOT to have a baby. We had a just-turned 3 yr old, a 16 month old, a brand new out-of-home-office, and we just wanted to.... breathe a little. Our short marriage has been filled with stress and pregnancy and stress. Did I mention stress?
It took us at LEAST 4 months to be 'okay' with having another baby. And another week or two to start getting excited about our new family. We started looking into the future and saw how much fun it was going to be. We thought our baby just might be a little girl. Christmas week I found out my baby girl was not, in fact, a baby girl, but another little boy. And I named him almost immediately. It was strange. I couldn't find a single girl's name I liked. And we started getting really excited. We were getting excited about thinking of the baby's personality and how it would mesh with his brothers. How fun it was going to be with them all playing together.
Tuesday of last week, just 9 days ago, we found out that life wouldn't look like that at all. We didn't know the extent of it at that point. We just talked about him needing shunts and no sports for him. He would likely have developmental delays, and at worst, there could be some intellectual delays as well. Thursday of last week, just 6 days ago, we found out that Everett would never make it home. Six days ago I wrote a note, for the first time, letting the world know our baby would die.
And even now, after saying it and writing it and thinking it, it still feels foreign. It feels like someone else's fingers typing. Until the wave of nausea reminds me that, no, these are my fingers. This is is my story. This is my baby.
And I feel.... peace. Sadness. But peace. Do I still scream and cry inside my head? What mother wouldn't? Do I still wish I'd just wake up from this terrible nightmare? Every second of every day. Do I still want to run away and hide? Absolutely. Do the tears still flow? I'm not sure they'll stop for quite some time. Do I still want to scream "F-- You God"? Only if I listened to some of the theology that assures me God is control of everything, including all the evil and hurt in the world, directing it all; that He tests our faith by putting us in terrible situations that seem impossible, that He desires our praises and glory to such an extent that He would force us to go through these terrible times just so we can learn something and offer Him praise for the strength to survive (sounds a little bit like a version of Munchausen By Proxy to me).
Because, in all (religious) honesty, I believe that's a very Old Testament way to think. To think that God requires us to sacrifice what we hold most dear, even our children, to be in favor with Him. I don't remember Jesus asking anyone to give up a child for death to help others in anyway. I don't remember Jesus offering much in the way rules, but in the way of compassion, love, and comfort. He healed. He challenged the normal religious views. He taught love. He taught peace in the midst of chaos. Not that he brought the storm, but that he can calm it. Not that he caused the sickness, but he can heal it. Not that he caused the death, but that he can reverse it. Not that he orchestrated the chaos, but that he can walk you through it. He spoke judgement to those who judged. He spoke discipline to those who were self-seeking and pious. He spoke hope to those in need.
And like David in Psalm 38, here I am, laying it all out. Sharing my story. In need of constant peace, comfort, and hope that comes with knowing God has not GIVEN this to me, but that He will HELP me through this. Because I cannot do this alone.
(the Message Bible version of parts of Psalm 38)
Lord, my longings are sitting in plain sight, my groans are an old story to you. My heart's about to break; I'm a burned-out case..... What I do, God, is wait for you, wait for my Lord, my God-- you will answer! ....I'm on the edge of losing it-- the pain in my gut keeps burning. I'm ready to tell my story of failure... don't dump me, God; my God, don't stand me up. Hurry and help me....
The crazy thing is, I still feel so numb. I still feel so...peaceful. Nauseous. Weak. Shaky. Exhausted. But peaceful. We talked last night about the service we want to have for Everett. We talked about trying to set up a funeral fund. All while waiting for the shower water to warm up. Like we were talking about what we had for dinner.
As I was talking to one of my long time faithful patients yesterday, the words just sounded so foreign. How can I talk with such monotony about our 'best overall option' being a preterm miscarriage with induction/delivery to follow? After his kicks have stopped. After his heart has stopped. After he's dead. And I just wait for this. Everyday. I keep a kick count in my head. I keep a record of all the times I feel... weird. Like I did before each of the other deliveries. And I wonder... is it over? Just as quickly as it began? I'm not ready. I'm not ready. Do you hear me, God??!?! I'm not ready for my baby to die. I'm not ready for my baby to die.
I never will be.
But I don't get to make that choice.
When we found out I was pregnant with Everett, we were in shock. We had been actively trying NOT to have a baby. We had a just-turned 3 yr old, a 16 month old, a brand new out-of-home-office, and we just wanted to.... breathe a little. Our short marriage has been filled with stress and pregnancy and stress. Did I mention stress?
It took us at LEAST 4 months to be 'okay' with having another baby. And another week or two to start getting excited about our new family. We started looking into the future and saw how much fun it was going to be. We thought our baby just might be a little girl. Christmas week I found out my baby girl was not, in fact, a baby girl, but another little boy. And I named him almost immediately. It was strange. I couldn't find a single girl's name I liked. And we started getting really excited. We were getting excited about thinking of the baby's personality and how it would mesh with his brothers. How fun it was going to be with them all playing together.
Tuesday of last week, just 9 days ago, we found out that life wouldn't look like that at all. We didn't know the extent of it at that point. We just talked about him needing shunts and no sports for him. He would likely have developmental delays, and at worst, there could be some intellectual delays as well. Thursday of last week, just 6 days ago, we found out that Everett would never make it home. Six days ago I wrote a note, for the first time, letting the world know our baby would die.
And even now, after saying it and writing it and thinking it, it still feels foreign. It feels like someone else's fingers typing. Until the wave of nausea reminds me that, no, these are my fingers. This is is my story. This is my baby.
And I feel.... peace. Sadness. But peace. Do I still scream and cry inside my head? What mother wouldn't? Do I still wish I'd just wake up from this terrible nightmare? Every second of every day. Do I still want to run away and hide? Absolutely. Do the tears still flow? I'm not sure they'll stop for quite some time. Do I still want to scream "F-- You God"? Only if I listened to some of the theology that assures me God is control of everything, including all the evil and hurt in the world, directing it all; that He tests our faith by putting us in terrible situations that seem impossible, that He desires our praises and glory to such an extent that He would force us to go through these terrible times just so we can learn something and offer Him praise for the strength to survive (sounds a little bit like a version of Munchausen By Proxy to me).
Because, in all (religious) honesty, I believe that's a very Old Testament way to think. To think that God requires us to sacrifice what we hold most dear, even our children, to be in favor with Him. I don't remember Jesus asking anyone to give up a child for death to help others in anyway. I don't remember Jesus offering much in the way rules, but in the way of compassion, love, and comfort. He healed. He challenged the normal religious views. He taught love. He taught peace in the midst of chaos. Not that he brought the storm, but that he can calm it. Not that he caused the sickness, but he can heal it. Not that he caused the death, but that he can reverse it. Not that he orchestrated the chaos, but that he can walk you through it. He spoke judgement to those who judged. He spoke discipline to those who were self-seeking and pious. He spoke hope to those in need.
And like David in Psalm 38, here I am, laying it all out. Sharing my story. In need of constant peace, comfort, and hope that comes with knowing God has not GIVEN this to me, but that He will HELP me through this. Because I cannot do this alone.
Tuesday, January 17, 2012
Living Outside of Scripture-Filled Wonderland
I feel, somehow, like I'm expected to be more hopeful. I feel, somehow, like because I believe in God, I should be praying hard core for a miracle every second of everyday. I feel, somehow, like because I am a Christian, I should not be sad. I feel, somehow, like I'm supposed to be/ am expected to be strong and filled with Bible stories of hope and faith and God's faithfulness and his omniscience and his control. Like I'm somehow supposed to just lift up my hands to praise the God whose plan, whose desire, whose will is to create a life IN me that will not survive OUTSIDE of me. I feel, somehow, that I am disappointing some in my honesty and candor.. "my humanity". I feel like I should just be blindly praying for a miracle without recognizing any part of reality. Afterall, isn't that where most Christians live in these situations? Isn't that where I'm supposed to live? In some Scripture-filled Wonderland of joy and praise?
I don't live there. I did. Long, long ago when the only thing I had ever had to deal with was being fat and ugly and ignored by my grandfather. But after being manipulated emotionally and sexually by my youth minister, acquaintance raped in school, knocked up before I was married (to the embarassment and shame of us, our parents, siblings, and friends), and now the impending death of my unborn son, I don't live in holy scripture wonderland anymore. I live in the fallen world where shit happens. Really bad shit.
Despite living here, in reality, I still believe there's a God who loves me. I cannot believe, however, that it was HIS PLAN, HIS WILL, or HIS DESIRE for these things to happen to me. Who would want to love a God like that? Who would want to SHARE that God with anyone? If I believed that the God I worship is intentionally orchestrating these events in my life, I would choose to have nothing to do with him. And there's no way I would tell anyone about him. (Let me make this a little more real for some) If I thought my FATHER was MAKING these things happen in my life, I'd refuse to believe he loved me at all. These aren't lessons. These aren't 'spiritual corrections'. I'm just saying.
But rather, I believe that when these really bad things happen, there is peace to be found in the pain. Sometimes that peace takes longer than expected. Sometimes, that peace is instantaneous. Either way, it's a peace that passes understanding. Are peace and hope the same thing? I don't know, maybe. Because peace and despair are opposite and mutually exclusive, I would venture to say that peace and hope are linked intrinsically.
Yet sadness can still exist in peacefulness.
And I think that's where I (we) are. We are at peace with the life Everett will have. Inside me. Growing our hearts to be more open to the random acts of life we keep trying to explain and put in organized boxes in our brains because it's easier to explain religious tradition and God's All Knowing (and seemingly mysterious and unknown) Plan, than it is to accept what you can't explain. And in a weird way, Everett exemplifies that. The geneticcounselor seemed fairly confidant that his chromosomal make up is fine. But his body isn't. I will not simplify and 'religiousify' the life of Everett to say that his purpose here is to change our hearts. Or touch someone else's life. Or to do something yet unseen that will have eternal significance. Because Everett himself is eternally significant, if only to his parents. I don't need his life to be something miraculous *He* is miraculous. I don't have to wait on heaven-- or even believe in heaven in the traditional religious way-- to have peace about his death. We have been all but assured that if he does actually go full term, he will not likely survive the delivery. If I believed the traditional religious way, I would have to praise a God who orchestrated the demise of my son. I am a mother. I could not praise anything or anyone that planned, organized, and executed the death my child.
But I can be at peace with a God who provides comfort. I can be thankful to a God who loves me so wastefully as to support us with hundreds of friends who pray and petition on our behalf. I am not praying for the miraculous healing of my son. I am praying for the reminder of ostentatious loveof a Father who comforts his children when shit happens. Feel free to pray for whatever you want, but don't feel like I need a miracle. I already have mine.
I don't live there. I did. Long, long ago when the only thing I had ever had to deal with was being fat and ugly and ignored by my grandfather. But after being manipulated emotionally and sexually by my youth minister, acquaintance raped in school, knocked up before I was married (to the embarassment and shame of us, our parents, siblings, and friends), and now the impending death of my unborn son, I don't live in holy scripture wonderland anymore. I live in the fallen world where shit happens. Really bad shit.
Despite living here, in reality, I still believe there's a God who loves me. I cannot believe, however, that it was HIS PLAN, HIS WILL, or HIS DESIRE for these things to happen to me. Who would want to love a God like that? Who would want to SHARE that God with anyone? If I believed that the God I worship is intentionally orchestrating these events in my life, I would choose to have nothing to do with him. And there's no way I would tell anyone about him. (Let me make this a little more real for some) If I thought my FATHER was MAKING these things happen in my life, I'd refuse to believe he loved me at all. These aren't lessons. These aren't 'spiritual corrections'. I'm just saying.
But rather, I believe that when these really bad things happen, there is peace to be found in the pain. Sometimes that peace takes longer than expected. Sometimes, that peace is instantaneous. Either way, it's a peace that passes understanding. Are peace and hope the same thing? I don't know, maybe. Because peace and despair are opposite and mutually exclusive, I would venture to say that peace and hope are linked intrinsically.
Yet sadness can still exist in peacefulness.
And I think that's where I (we) are. We are at peace with the life Everett will have. Inside me. Growing our hearts to be more open to the random acts of life we keep trying to explain and put in organized boxes in our brains because it's easier to explain religious tradition and God's All Knowing (and seemingly mysterious and unknown) Plan, than it is to accept what you can't explain. And in a weird way, Everett exemplifies that. The geneticcounselor seemed fairly confidant that his chromosomal make up is fine. But his body isn't. I will not simplify and 'religiousify' the life of Everett to say that his purpose here is to change our hearts. Or touch someone else's life. Or to do something yet unseen that will have eternal significance. Because Everett himself is eternally significant, if only to his parents. I don't need his life to be something miraculous *He* is miraculous. I don't have to wait on heaven-- or even believe in heaven in the traditional religious way-- to have peace about his death. We have been all but assured that if he does actually go full term, he will not likely survive the delivery. If I believed the traditional religious way, I would have to praise a God who orchestrated the demise of my son. I am a mother. I could not praise anything or anyone that planned, organized, and executed the death my child.
But I can be at peace with a God who provides comfort. I can be thankful to a God who loves me so wastefully as to support us with hundreds of friends who pray and petition on our behalf. I am not praying for the miraculous healing of my son. I am praying for the reminder of ostentatious loveof a Father who comforts his children when shit happens. Feel free to pray for whatever you want, but don't feel like I need a miracle. I already have mine.
Monday, January 16, 2012
No answers. No Options. Only Questions Remain.
No answer. That's the answer. The answer is wait. More. For an explanation. There is no evidence of a trisomy in the quick assay, known as an Insight. There will be more digging into the genome now. O God. Did my X do this to my son?
No answer. Or answer. Either way, it doesn't change much except prognosis. An answer would have research and stats to help guide the prognosis. No answer means more waiting. No answer means does any known 'syndrome' or 'condition' fit what Everett has? Enlarged lateral and fourth ventricles, absent cerebellular vermis, absent corpus callosum, significant VSD (heart defect), intestinal/diaphragmatic hernia into the lungs, dilated kidney and renal pelvis' and who knows if there's something else. There isn't a system that goes untouched. Everything is affected.
The question, now more than before possibly, is does Everette hurt? Studies are showing that at 20 weeks gestation, in utero babies can feel pain/external stimuli. Clearly. Kipton used to kick Keith's hand every time he touched me. There's not a person/doctor on the planet that will convince me that a newborn doesn't feel pain. I had a preemie. He felt pain. We were ushered out of the NICU all the time so we didn't hear his screams while they stuck and restuck him repeatedly. If he laid on a button on my shirt, he would squirm away from it. At times when he had reflux, he would scream. Ask any mother of a colicky baby, babies feel pain. Ask any mother, you would take it away if you could.
So what happens if Everett is in pain because we choose to deliver? What if his VSD and his intestinal herniation lead to congestive heart failure, making my infant son die PAINFULLY, drowning in his own fluid? What if the intestinal hernia so cripples his lungs that breathing itself is painful? What if pooping is so painful that there are endless screams as it tries to make its way through the herniation in his lungs, causing him to stop breathing? What if his kidneys don't work and fluid is constantly backing up? What if 'viable' life is something so short of life that it is painful and barely recognizable? What if all these things *don't* take his life, but rather make his existence painful and miserable? What if his existence is based only on the ability to mediate pain? Is existing really life? (And herein lies the judgment I warned you would come. I can only imagine the comments and scoldings to come)
On the flip side, almost all of the termination 'options' are not options in our hearts. D&E. D&C. He could FEEL what was happening. How is that different than him FEELING his own death outside the womb? It seems even less humane. The other possible option is a pharmacological cocktail to induce labor. Just so he can (most likely) be in pain.
There isn't a good option to be had. Hopefully tomorrow with genetic counseling, we will have more insights and more leads to explanation. We should have the full genetic assay studied and interpreted by the end of the week. Then, I'm sure, there will be more appointments. Especially if we try to see what the viability of life really is with all these abnormalities. There are at least 4 prenatal specialists we'd need to see. And so many surgeries, if surgery is even possible. The doctor didn't seem to think that many of the malformations could be fixed. Possibly only the VSD. She didn't even mention shunting. She seemed very grim about the diaphragmatic herniation-- possibly more somber about that than anything else. She offered no treatment options for that.
And the numbness continues. The disbelief abounds. The fog persists. And questions remain. With no answers in sight. I have cried and screamed inside my head until it pounds every night. I have cried so much my tear ducts hurt. I feel so empty and overwhelmed I can't often think straight.
And then Aiden hugs me. Kipton calls my name. And for a moment I am restored. And then, I remember. And I hug my boys. I kiss them. And we play trains. We read books. We play caboose. And I want to quit everything just to be with them every second. But I'm so exhausted I can barely play trains. I can barely read books. I can barely play caboose. Afterall, I'm still 23 weeks pregnant, the mother of a sweet but strong-willed 3 1/2 yr old and 19 month old who doesn't sleep through the night, a wife, and business owner.
But I will play and read and hug and kiss and write so that I can make it through this. If you see me, don't expect some of the emotion you read, I can't and expect to keep going if I do more than give sterile details. Because still, a week later, we have no answers, no options, and only (different) questions.
No answer. Or answer. Either way, it doesn't change much except prognosis. An answer would have research and stats to help guide the prognosis. No answer means more waiting. No answer means does any known 'syndrome' or 'condition' fit what Everett has? Enlarged lateral and fourth ventricles, absent cerebellular vermis, absent corpus callosum, significant VSD (heart defect), intestinal/diaphragmatic hernia into the lungs, dilated kidney and renal pelvis' and who knows if there's something else. There isn't a system that goes untouched. Everything is affected.
The question, now more than before possibly, is does Everette hurt? Studies are showing that at 20 weeks gestation, in utero babies can feel pain/external stimuli. Clearly. Kipton used to kick Keith's hand every time he touched me. There's not a person/doctor on the planet that will convince me that a newborn doesn't feel pain. I had a preemie. He felt pain. We were ushered out of the NICU all the time so we didn't hear his screams while they stuck and restuck him repeatedly. If he laid on a button on my shirt, he would squirm away from it. At times when he had reflux, he would scream. Ask any mother of a colicky baby, babies feel pain. Ask any mother, you would take it away if you could.
So what happens if Everett is in pain because we choose to deliver? What if his VSD and his intestinal herniation lead to congestive heart failure, making my infant son die PAINFULLY, drowning in his own fluid? What if the intestinal hernia so cripples his lungs that breathing itself is painful? What if pooping is so painful that there are endless screams as it tries to make its way through the herniation in his lungs, causing him to stop breathing? What if his kidneys don't work and fluid is constantly backing up? What if 'viable' life is something so short of life that it is painful and barely recognizable? What if all these things *don't* take his life, but rather make his existence painful and miserable? What if his existence is based only on the ability to mediate pain? Is existing really life? (And herein lies the judgment I warned you would come. I can only imagine the comments and scoldings to come)
On the flip side, almost all of the termination 'options' are not options in our hearts. D&E. D&C. He could FEEL what was happening. How is that different than him FEELING his own death outside the womb? It seems even less humane. The other possible option is a pharmacological cocktail to induce labor. Just so he can (most likely) be in pain.
There isn't a good option to be had. Hopefully tomorrow with genetic counseling, we will have more insights and more leads to explanation. We should have the full genetic assay studied and interpreted by the end of the week. Then, I'm sure, there will be more appointments. Especially if we try to see what the viability of life really is with all these abnormalities. There are at least 4 prenatal specialists we'd need to see. And so many surgeries, if surgery is even possible. The doctor didn't seem to think that many of the malformations could be fixed. Possibly only the VSD. She didn't even mention shunting. She seemed very grim about the diaphragmatic herniation-- possibly more somber about that than anything else. She offered no treatment options for that.
And the numbness continues. The disbelief abounds. The fog persists. And questions remain. With no answers in sight. I have cried and screamed inside my head until it pounds every night. I have cried so much my tear ducts hurt. I feel so empty and overwhelmed I can't often think straight.
And then Aiden hugs me. Kipton calls my name. And for a moment I am restored. And then, I remember. And I hug my boys. I kiss them. And we play trains. We read books. We play caboose. And I want to quit everything just to be with them every second. But I'm so exhausted I can barely play trains. I can barely read books. I can barely play caboose. Afterall, I'm still 23 weeks pregnant, the mother of a sweet but strong-willed 3 1/2 yr old and 19 month old who doesn't sleep through the night, a wife, and business owner.
But I will play and read and hug and kiss and write so that I can make it through this. If you see me, don't expect some of the emotion you read, I can't and expect to keep going if I do more than give sterile details. Because still, a week later, we have no answers, no options, and only (different) questions.
The Wait
We wait this afternoon, boys with Grandma, snuggled in our bed, for the "phone call". The call that determines if there is a current diagnosis. We wait to see if the crazy chromosomal mix up happened as a fluke, creating a Trisomy. Or if our genetic make up created this... this...impossible situation.
I. I don't know what I'm hoping for. I am terrified with every 'crampy' feeling in my pelvis. Is *this* my impending miscarriage? If I don't feel Everette move every hour or two, I silently freak and out sink into myself. I get nauseous. I get dizzy. I get weak. And suddenly, I can't look at anyone. Anywhere. I don't answer a text message for a while. I don't look at the facebook notifications. I just... exist. Until he moves again. And I wait for it to start all over.
If we get the news of a "13", that's essentially what I'll be doing. Waiting. Endlessly. For a miscarriage.
If we get the news of an "18", we wait for the unknown. The chance of miscarriage is still high, although not as absolute as the former. If it's an 18, we face the future with complete uncertainty. We wait for the onset of labor. We make an outline for the birth plan. We make arrangements with a funeral home to be on stand by. We make sure the hospital has a photographer that can be 'on call'-- or at least we try to find one that can be. We must discuss the plans with our parents. Both the birth plan and the funeral plan. Of my baby.
If we don't get a diagnosis of a Trisomy, they begin intricately screening our genes and the databases for matches and causes. And, instead of blaming chance and probabilities, I get to blame myself. I know it's stupid. I get it. Really I do. And I know it's not my 'fault', but... it is. My X is likely the culprit. MY genes. MY stupidity for not getting screened with any pregnancy. There's nothing in our history on either side. At least I thought. I was reminded of what I was previously told were miscarriages in my grandmother. Turns out they weren't miscarriages. There were two stillborns and a baby who lived 6 hours. My genes.
How do you keep going everyday? How do you act like nothing is on your mind? How do you just... wait? How do you go to work? How do you run a business? How do you give yourself to other people as a healthcare provider? While you wait to have a miscarriage? Or wait months to deliver a baby who won't live? How do you face your parents? Siblings? How do you face your in laws? How do you just hang out? How do you remain engaged in every daily activity? How do you have sex? How do you laugh? How do you NOT get drunk? And why the hell does it matter if I do? How do you... wait? For the death of your unborn baby?
Oddly enough, I wish I had a corporate job-- isolated in a cubicle. Absolutely the opposite of my personality. But while I wait. While I wait. Instead, I have a business. I'm the only reason it exists. It can't shut down. I have bills. I have a 2 yr contract on the space. I have a 3 year contract on the software. There's the electricity bill, the water bill, comcast, patients. There is no retreat. No wall to hide behind. And the worst thing? The business can't just keep paying the bills and providing enough in reserves to purchase the next thing the office needs. I have to GROW the damn thing. While I wait. While I wait.
I know there's this really spiritual and fantastic song that talks about what to do you while you wait. Serving and praising. I'm not there yet. I'm just not there yet.
I will learn while I wait. I will grow my marriage while I wait. I will fall in love my little boy who will not love me back. I will take those beautiful pregnancy pictures I never said I would. I will love my 2 little boys more than I ever did before. I will hug my husband and kiss him everyday and tell him how thankful I am for him, his support, and his love. I will tell my Mama how thankful I am that she gives and gives and gives, wanting nothing but a hug in return. I will tell my Daddy that I love him. I will share my story. I will share the struggles. I will share the connections. I will share my heart. I will connect with friends again. I will 'love wastefully' (stolen from an Episcopal minister/professor) as Jesus did.
And I will pray that is enough.
I. I don't know what I'm hoping for. I am terrified with every 'crampy' feeling in my pelvis. Is *this* my impending miscarriage? If I don't feel Everette move every hour or two, I silently freak and out sink into myself. I get nauseous. I get dizzy. I get weak. And suddenly, I can't look at anyone. Anywhere. I don't answer a text message for a while. I don't look at the facebook notifications. I just... exist. Until he moves again. And I wait for it to start all over.
If we get the news of a "13", that's essentially what I'll be doing. Waiting. Endlessly. For a miscarriage.
If we get the news of an "18", we wait for the unknown. The chance of miscarriage is still high, although not as absolute as the former. If it's an 18, we face the future with complete uncertainty. We wait for the onset of labor. We make an outline for the birth plan. We make arrangements with a funeral home to be on stand by. We make sure the hospital has a photographer that can be 'on call'-- or at least we try to find one that can be. We must discuss the plans with our parents. Both the birth plan and the funeral plan. Of my baby.
If we don't get a diagnosis of a Trisomy, they begin intricately screening our genes and the databases for matches and causes. And, instead of blaming chance and probabilities, I get to blame myself. I know it's stupid. I get it. Really I do. And I know it's not my 'fault', but... it is. My X is likely the culprit. MY genes. MY stupidity for not getting screened with any pregnancy. There's nothing in our history on either side. At least I thought. I was reminded of what I was previously told were miscarriages in my grandmother. Turns out they weren't miscarriages. There were two stillborns and a baby who lived 6 hours. My genes.
How do you keep going everyday? How do you act like nothing is on your mind? How do you just... wait? How do you go to work? How do you run a business? How do you give yourself to other people as a healthcare provider? While you wait to have a miscarriage? Or wait months to deliver a baby who won't live? How do you face your parents? Siblings? How do you face your in laws? How do you just hang out? How do you remain engaged in every daily activity? How do you have sex? How do you laugh? How do you NOT get drunk? And why the hell does it matter if I do? How do you... wait? For the death of your unborn baby?
Oddly enough, I wish I had a corporate job-- isolated in a cubicle. Absolutely the opposite of my personality. But while I wait. While I wait. Instead, I have a business. I'm the only reason it exists. It can't shut down. I have bills. I have a 2 yr contract on the space. I have a 3 year contract on the software. There's the electricity bill, the water bill, comcast, patients. There is no retreat. No wall to hide behind. And the worst thing? The business can't just keep paying the bills and providing enough in reserves to purchase the next thing the office needs. I have to GROW the damn thing. While I wait. While I wait.
I know there's this really spiritual and fantastic song that talks about what to do you while you wait. Serving and praising. I'm not there yet. I'm just not there yet.
I will learn while I wait. I will grow my marriage while I wait. I will fall in love my little boy who will not love me back. I will take those beautiful pregnancy pictures I never said I would. I will love my 2 little boys more than I ever did before. I will hug my husband and kiss him everyday and tell him how thankful I am for him, his support, and his love. I will tell my Mama how thankful I am that she gives and gives and gives, wanting nothing but a hug in return. I will tell my Daddy that I love him. I will share my story. I will share the struggles. I will share the connections. I will share my heart. I will connect with friends again. I will 'love wastefully' (stolen from an Episcopal minister/professor) as Jesus did.
And I will pray that is enough.
Saturday, January 14, 2012
Somewhere between "It is well with my Soul" and F-- You, God
I hate hard candy. I always have. On the way home from the doctor Thursday, I ate two green suckers from the bank. I haven't answered the (ringing) phone in 3 days. I probably only will Monday afternoon when the genetic screening results come in. Then who knows after that. I should up my text message plan this month.
On this journey of grieving (and eventually rejoicing) in the birth and impending death of my unborn son, Everett, many of you will judge my emotions. Many of you will grieve with me. Many of you will try to encourage and support. And I will say again, many of you will judge this process. If you've never read what I write, you don't know that I don't mince words nor do I sugar coat. I speak the ugly, honest, raw truth. And today, two days after we've learned that we will likely be simultaneously planning both the delivery and burial of my son, thankful, grateful, and blessed are hardly the things I feel.
There has been a tremendous outpouring of support for us. We are so moved. Please don't take any of my thoughts personally, I am simply, honestly, outpouring my heart through this incredibly impossible journey in hopes that my pain may somehow help a family who is faced with the same tragedy. We are so humbled to have had so many offers of food, babysitters, sounding board, shoulders to cry on. Thank you.
But I wish we didn't know this kind of support because I wish we didn't need it.
I've read my Facebook note about 45 times because it just hasn't sunk in. I can't talk about anything remotely related to how I feel, but I can write. And here are some of those ever wandering thoughts that have pilfered my brain and perforated my heart in the last few days.
Getting Home
Keith called our parents on the way home (we drove to the appointment separately because we had both been at work). I thought about it, but I knew I couldn't. Not yet. We went to pick up our boys from school. Mainly to hug them. Both of us on edge, both drained, both totally distraught, the night was horrible. We were going to "ChicNPlay' but Aiden had pooped in his pants, again. So we went home. Only for Kipton to be incredibly clingy to/on me, and I wasn't supposed to be picking him up but I had to. Aiden (loudly) refused (repeatedly) to poop on the potty. Eventually we just gave up and put on some jogging pants for him to wear until bedtime. We managed to get something for the boys to eat, who were both needy and whining on top of us being irritated that Aiden refused to poop in the potty (and yes, he knows he has to go, he just doesn't want to stop what he's doing to take a dump). After just giving up on making ourselves dinner, we ordered pizza and put a movie on for the boys (not something we do regularly AT ALL). And then, more fighting and yelling about not pooping in the potty. Worn out and beyond irritated, we just gave up. Only to find little bits of poop on the floor as we were heading upstairs to bed. You can just *imagine* how well that went over with a Daddy who just learned his 3rd son was going to die.
Thankfully, bedtme was a littler easier-- only because Daddy just chose to lay with Aiden and I patted Kipton to sleep. I don't think we could've taken much more. I don't think we even said very much. I went downstairs to escape and write. And the outpouring began.
Many prayers have been offered on our behalf and we are very grateful. I'm sure that's how we've managed to make it through to this point.
Two Days In
Tonight, while sitting in bed, Keith was reading about grieving the loss of a child and how to handle it. He laughed out loud (which I thought was odd) at something he read. It seems that we aren't the only ones who have wanted to strangle the (very well intentioned and honestly sincere) folks who've tried to comfort us with "God thoughts". One of the first things the page says to NEVER say? It was God's plan, God's will, or God's path. Don't get me wrong, I fully understand and appreciate the heart behind the comments, but put yourselves in our shoes. Do you REALLY think I feel BLESSED right now? I've just learned that barring a miracle like NO ONE has seen in thousands and thousands of years, "God's Plan" "God's Path" "God's Will" is to terminate my son's life?!?! Not without prior knowledge, not in an unsuspected miscarriage, but WITH prior knowledge, WITHOUT even with the option of REAL treatment upon birth?!?! And to know that every time I look in the mirror, every time I feel him kick, every time I have to pee in the middle of the night, I am then and there reminded that MY SON, MY LITTLE BOY is going to die?!?!?! How on EARTH am I supposed to *feel* blessed by God right now?How the hell do you feel honored to be chosen to go through this?!?! What kool-aid have you been drinking?!?! Would you? Would *you* feel thankful to God that he's chosen your son to die so that someone might learn a lesson? Maybe you would. Maybe you're better than I am. But I don't feel blessed, honored, or loved by God right now. And WHY OH WHY would I want to sing praises and songs of thankfulness TO THE GOD whose "plan" is to 'knit' my son together in such a way that he should quite possibly die before he's even born or very soon after he is born? Ya know what? I'm not Job. And Job wasn't a mother. I'm not recanting my faith, I'm just being HONEST. I'm quite sure he didn't like the fact that his whole life was stripped of him. Mary, well I'm pretty sure didn't have a freaking clue what the prophecies really meant and she probably didn't really get the whole "angel in the night with a one time message" right away. I'm pretty sure she wasn't particularly feeling blessed and thankful watching Jesus be beaten and crucified. In fact, I'm pretty sure she spent a few days being really really pissed at God.
How do you really recover from that? From losing your son?
I suppose we will find out
But today, I find myself: somewhere between "It is well with my soul" and "F-- You, God". (Just for the record, I don't think I've actually SAID that word more than once in my life)
I find myself in a REAL place. Where I believe God is there. But I refuse to believe that God's will, God's DESIRE is to steal the life of my baby Everett. We will most certainly learn from this experience. We will learn what it means to love beyond ourselves, to look beyond our strength, and open our hearts and lives to those around us. But what kind of God would chose to teach us (or anyone else) a lesson by creating a baby that will not survive? We will be reassured daily that we are not in control, but we know the One who is. But what kind of God proves his point by crippling a unborn baby and sentencing him to death?
We will not buy into that. Instead, we will understand that shit happens. (And yes, I've said that word more than once) And for whatever reason, genetic or fluke of nature, shit happened to our son. That doesn't mean God hates us. It doesn't mean He's chosen us be examples of anything. It means we can choose to cling to our faith that we sometimes don't understand or we can struggle through trying (and failing) to understand the unthinkable. It means we can choose to be resentful (and I'm sure we will be at one point or another) or we can choose to be open.
See, I've been through enough shit in my life to know that healing doesn't come (for me) in being super spiritual or by endlessly quoting and reading scripture. Healing for me comes in being honest with myself. In being vulnerable. In being ripped to shreds and being willing to be open about it. In saying I just don't get it, God, but I need to believe you're there. In not even being sure he is at times, but clinging to the hope that there's more to life than what I feel in *this* moment.
We are choosing to let Everette grow and develop and live as long as he can on his own. That road is going to be hard. Because, sincerely, how do you go through 17 more weeks of pregnancy knowing your baby will likely not even live *THAT* long? Sure, it's easy and really spiritual to say something about feeling privileged and honored and blessed with every kick and turn and midnight pee, and I'm sure, in a year, I can say that. I'm sure that eventually we will both be able to say what a blessing our little Everett was; how much this brought our family and friends together, how much is changed our lives, and how grateful we were to have every second with him.
But right now,.....(sobs) right now it sucks to know I don't need to get another crib. Right now is SUCKS to know I won't need that nursing chair. Right now, it sucks to know we don't need more baby sheets. Right now, it sucks to know he won't even know his brothers and his brothers won't know him. Right now, it sucks to know he'll never love his grandparents the way his brothers do. Right now it sucks to have to be thinking about paying a photographer to be in the delivery room so we MIGHT be able to get pictures of him while he's alive. It sucks that Keith is even thinking about wanting to make a little casket with his name engraved on it. He's not even here for crying out loud!!!!!! It sucks. ...It just sucks. I don't wany my baby to die. I don't want to be writing this stupid blog about the impending death of my little boy. SCREW YOU GOD!! I don't want my baby to die.
But I know.... I know that when peace like a river attendeth my way, when sorrows like sea billows roll, whatever my lot, You've taught me to say, It is well, It is well, with my soul.
On this journey of grieving (and eventually rejoicing) in the birth and impending death of my unborn son, Everett, many of you will judge my emotions. Many of you will grieve with me. Many of you will try to encourage and support. And I will say again, many of you will judge this process. If you've never read what I write, you don't know that I don't mince words nor do I sugar coat. I speak the ugly, honest, raw truth. And today, two days after we've learned that we will likely be simultaneously planning both the delivery and burial of my son, thankful, grateful, and blessed are hardly the things I feel.
There has been a tremendous outpouring of support for us. We are so moved. Please don't take any of my thoughts personally, I am simply, honestly, outpouring my heart through this incredibly impossible journey in hopes that my pain may somehow help a family who is faced with the same tragedy. We are so humbled to have had so many offers of food, babysitters, sounding board, shoulders to cry on. Thank you.
But I wish we didn't know this kind of support because I wish we didn't need it.
I've read my Facebook note about 45 times because it just hasn't sunk in. I can't talk about anything remotely related to how I feel, but I can write. And here are some of those ever wandering thoughts that have pilfered my brain and perforated my heart in the last few days.
Getting Home
Keith called our parents on the way home (we drove to the appointment separately because we had both been at work). I thought about it, but I knew I couldn't. Not yet. We went to pick up our boys from school. Mainly to hug them. Both of us on edge, both drained, both totally distraught, the night was horrible. We were going to "ChicNPlay' but Aiden had pooped in his pants, again. So we went home. Only for Kipton to be incredibly clingy to/on me, and I wasn't supposed to be picking him up but I had to. Aiden (loudly) refused (repeatedly) to poop on the potty. Eventually we just gave up and put on some jogging pants for him to wear until bedtime. We managed to get something for the boys to eat, who were both needy and whining on top of us being irritated that Aiden refused to poop in the potty (and yes, he knows he has to go, he just doesn't want to stop what he's doing to take a dump). After just giving up on making ourselves dinner, we ordered pizza and put a movie on for the boys (not something we do regularly AT ALL). And then, more fighting and yelling about not pooping in the potty. Worn out and beyond irritated, we just gave up. Only to find little bits of poop on the floor as we were heading upstairs to bed. You can just *imagine* how well that went over with a Daddy who just learned his 3rd son was going to die.
Thankfully, bedtme was a littler easier-- only because Daddy just chose to lay with Aiden and I patted Kipton to sleep. I don't think we could've taken much more. I don't think we even said very much. I went downstairs to escape and write. And the outpouring began.
Many prayers have been offered on our behalf and we are very grateful. I'm sure that's how we've managed to make it through to this point.
Two Days In
Tonight, while sitting in bed, Keith was reading about grieving the loss of a child and how to handle it. He laughed out loud (which I thought was odd) at something he read. It seems that we aren't the only ones who have wanted to strangle the (very well intentioned and honestly sincere) folks who've tried to comfort us with "God thoughts". One of the first things the page says to NEVER say? It was God's plan, God's will, or God's path. Don't get me wrong, I fully understand and appreciate the heart behind the comments, but put yourselves in our shoes. Do you REALLY think I feel BLESSED right now? I've just learned that barring a miracle like NO ONE has seen in thousands and thousands of years, "God's Plan" "God's Path" "God's Will" is to terminate my son's life?!?! Not without prior knowledge, not in an unsuspected miscarriage, but WITH prior knowledge, WITHOUT even with the option of REAL treatment upon birth?!?! And to know that every time I look in the mirror, every time I feel him kick, every time I have to pee in the middle of the night, I am then and there reminded that MY SON, MY LITTLE BOY is going to die?!?!?! How on EARTH am I supposed to *feel* blessed by God right now?How the hell do you feel honored to be chosen to go through this?!?! What kool-aid have you been drinking?!?! Would you? Would *you* feel thankful to God that he's chosen your son to die so that someone might learn a lesson? Maybe you would. Maybe you're better than I am. But I don't feel blessed, honored, or loved by God right now. And WHY OH WHY would I want to sing praises and songs of thankfulness TO THE GOD whose "plan" is to 'knit' my son together in such a way that he should quite possibly die before he's even born or very soon after he is born? Ya know what? I'm not Job. And Job wasn't a mother. I'm not recanting my faith, I'm just being HONEST. I'm quite sure he didn't like the fact that his whole life was stripped of him. Mary, well I'm pretty sure didn't have a freaking clue what the prophecies really meant and she probably didn't really get the whole "angel in the night with a one time message" right away. I'm pretty sure she wasn't particularly feeling blessed and thankful watching Jesus be beaten and crucified. In fact, I'm pretty sure she spent a few days being really really pissed at God.
How do you really recover from that? From losing your son?
I suppose we will find out
But today, I find myself: somewhere between "It is well with my soul" and "F-- You, God". (Just for the record, I don't think I've actually SAID that word more than once in my life)
I find myself in a REAL place. Where I believe God is there. But I refuse to believe that God's will, God's DESIRE is to steal the life of my baby Everett. We will most certainly learn from this experience. We will learn what it means to love beyond ourselves, to look beyond our strength, and open our hearts and lives to those around us. But what kind of God would chose to teach us (or anyone else) a lesson by creating a baby that will not survive? We will be reassured daily that we are not in control, but we know the One who is. But what kind of God proves his point by crippling a unborn baby and sentencing him to death?
We will not buy into that. Instead, we will understand that shit happens. (And yes, I've said that word more than once) And for whatever reason, genetic or fluke of nature, shit happened to our son. That doesn't mean God hates us. It doesn't mean He's chosen us be examples of anything. It means we can choose to cling to our faith that we sometimes don't understand or we can struggle through trying (and failing) to understand the unthinkable. It means we can choose to be resentful (and I'm sure we will be at one point or another) or we can choose to be open.
See, I've been through enough shit in my life to know that healing doesn't come (for me) in being super spiritual or by endlessly quoting and reading scripture. Healing for me comes in being honest with myself. In being vulnerable. In being ripped to shreds and being willing to be open about it. In saying I just don't get it, God, but I need to believe you're there. In not even being sure he is at times, but clinging to the hope that there's more to life than what I feel in *this* moment.
We are choosing to let Everette grow and develop and live as long as he can on his own. That road is going to be hard. Because, sincerely, how do you go through 17 more weeks of pregnancy knowing your baby will likely not even live *THAT* long? Sure, it's easy and really spiritual to say something about feeling privileged and honored and blessed with every kick and turn and midnight pee, and I'm sure, in a year, I can say that. I'm sure that eventually we will both be able to say what a blessing our little Everett was; how much this brought our family and friends together, how much is changed our lives, and how grateful we were to have every second with him.
But right now,.....(sobs) right now it sucks to know I don't need to get another crib. Right now is SUCKS to know I won't need that nursing chair. Right now, it sucks to know we don't need more baby sheets. Right now, it sucks to know he won't even know his brothers and his brothers won't know him. Right now, it sucks to know he'll never love his grandparents the way his brothers do. Right now it sucks to have to be thinking about paying a photographer to be in the delivery room so we MIGHT be able to get pictures of him while he's alive. It sucks that Keith is even thinking about wanting to make a little casket with his name engraved on it. He's not even here for crying out loud!!!!!! It sucks. ...It just sucks. I don't wany my baby to die. I don't want to be writing this stupid blog about the impending death of my little boy. SCREW YOU GOD!! I don't want my baby to die.
But I know.... I know that when peace like a river attendeth my way, when sorrows like sea billows roll, whatever my lot, You've taught me to say, It is well, It is well, with my soul.
Thursday, January 12, 2012
the world doesn't stop just because your world falls apart
For whatever reason, my coping mechanism is words. So here goes.
Two days ago I had an ultrasound that wasn't as exciting as it should have been. No parent really *expects* to hear that something could be wrong with your unborn baby. We have been blessed with two healthy little boys, we have no genetic diseases/mutations in our family, and I'm 31. I eat better than most, worse than a few. When the ultrasound was taking 30+ minutes and there were multiple shots of all the organs, I began to have worries, but the baby was moving a lot, so I just wrote it off.
Until, after 45 minutes of ultrasound, I was put in the consultation room, not the exam room. Still, already feeling a little woozy because eating just isn't my forte right now, I just started getting in touch with patients to let them know I'd be running a few minutes late that afternoon.
The doctor comes in, more somber than she normally does, and asks how I'm feeling. I tell her the truth (as you should) and she ordered a glucose stick just to check. With the nurse still trying to get the machine to work, the doctor comes in with pictures. What I thought was weird on the screen, was in fact, weird. But I wasn't looking at his foramen magnum (the hole in the bottom of the skull that allows the connection of the brain and spinal cord), I was looking at an enlarged fourth ventricle. CSF fluid isn't moving. There were no good shots of the spine, so we can't tell if there's a defect in it at the moment. He'll have to have shunts. And I mention that his cerebellum (balance, coordination of movement, but a TON of other things) should be there, and she agrees, but we can't see it. She says something about a syndrome that starts with a D and W. All the while another nurse comes in trying to get the stupid glucose reading and the machine won't cooperate. The doctor goes on. His renal pelvis is dilated to twice+ its normal size. Could be something, could be incidental. She KEEPS going. But pauses to tell the nurses that I probably don't care about the glucose. I'll eat something and drink something later. She isn't sure if his stomach has 2 lobes or not. We need better pictures for that. He also has puffy cheeks already. He's not supposed to have FAT at this point. Finally, the stupid machine is working. 86. Well, at least one thing is good today.
In a bit of blur, still trying to process that last two hours, all the information 'possibilities' and trying to figure out what might be the result of these things with nothing more to go on, I get in my car, I back out, I turn left. Slowly, the flood comes.
He might not be able to walk. He might be able to see very well. He'll have terrible depth perception. He probably will be significantly delayed physically and likely mentally. What the hell does a bilobed stomach mean? Dilated renal pelvis-- deformity or just urine back up? Do I call Keith, it's a huge day for him at work? I don't have anybody else to call. OMG. He might not be able to breathe well. His heart might have defects too. O.M.G. Will he die? Will he even be born? I HAVE to call Keith.
Is my folic acid supplement not enough? Will potatoes do that? I mean, that's all I've wanted to eat for like 3 months now. Can amoxicillian do that? I've been on it twice during the pregnancy....
Are those crazy strong kicks at 22 weeks because he doesn't have any coordination? Is my baby hurting, is that why he is constantly rolling and kicking and squirming? I don't remember the other two being this active.
At the office (because I have patients coming in this afternoon) Keith calls. I tell him. As much as I can. I'm sure he can't understand much. I just keep telling him and me, it could be VERY mild... it could be incredibly severe, but it COULD be VERY mild. I have to get it together, the world doesn't stop just because your world falls apart. I have patients coming. I have to be a doctor. I have to get it together.
Somehow I make it through the next 2 hours. I get home. Keith, red eyed at the table, computer open. I start to recant the afternoon. Keith just keeps saying "I don't understand. We don't have anything in our family". I know. I know. Sometimes there are just screw ups. I start explaining what the cerebellum is, what the vermis is, what the ventricles do, what they aren't doing, what the renal pelvis is, what it could mean. It can't be Downs. We don't have it in our family. I know. I know. Sometimes things just get screwed up. I explain spina bifida and what a meningiocele is. I finally know why I went to chiropractic school. This moment. This day. To be able to calmly explain the intricacies of the central nervous system. We both cry.
I slept on the floor with my boys, holding the hand of the littlest and watching the eldest.
The waiting is the hardest part. I'm headed to the appointment right now. A mix of emotions. Hopeful. Scared to death. Furious that somehow life just keeps rolling along around me. I still had to make lunch for the boys. I still had to get dressed. I still had to see patients. Nauseated. Shaking. Terrified. With every move my little Everett makes. Does he mean to move? Can he even help it? Is he hurting? Will he see? Will he walk? Will he make it?
I suppose we're about to go find out our chances. And may we be equipped to handle whatever is given.
Two days ago I had an ultrasound that wasn't as exciting as it should have been. No parent really *expects* to hear that something could be wrong with your unborn baby. We have been blessed with two healthy little boys, we have no genetic diseases/mutations in our family, and I'm 31. I eat better than most, worse than a few. When the ultrasound was taking 30+ minutes and there were multiple shots of all the organs, I began to have worries, but the baby was moving a lot, so I just wrote it off.
Until, after 45 minutes of ultrasound, I was put in the consultation room, not the exam room. Still, already feeling a little woozy because eating just isn't my forte right now, I just started getting in touch with patients to let them know I'd be running a few minutes late that afternoon.
The doctor comes in, more somber than she normally does, and asks how I'm feeling. I tell her the truth (as you should) and she ordered a glucose stick just to check. With the nurse still trying to get the machine to work, the doctor comes in with pictures. What I thought was weird on the screen, was in fact, weird. But I wasn't looking at his foramen magnum (the hole in the bottom of the skull that allows the connection of the brain and spinal cord), I was looking at an enlarged fourth ventricle. CSF fluid isn't moving. There were no good shots of the spine, so we can't tell if there's a defect in it at the moment. He'll have to have shunts. And I mention that his cerebellum (balance, coordination of movement, but a TON of other things) should be there, and she agrees, but we can't see it. She says something about a syndrome that starts with a D and W. All the while another nurse comes in trying to get the stupid glucose reading and the machine won't cooperate. The doctor goes on. His renal pelvis is dilated to twice+ its normal size. Could be something, could be incidental. She KEEPS going. But pauses to tell the nurses that I probably don't care about the glucose. I'll eat something and drink something later. She isn't sure if his stomach has 2 lobes or not. We need better pictures for that. He also has puffy cheeks already. He's not supposed to have FAT at this point. Finally, the stupid machine is working. 86. Well, at least one thing is good today.
In a bit of blur, still trying to process that last two hours, all the information 'possibilities' and trying to figure out what might be the result of these things with nothing more to go on, I get in my car, I back out, I turn left. Slowly, the flood comes.
He might not be able to walk. He might be able to see very well. He'll have terrible depth perception. He probably will be significantly delayed physically and likely mentally. What the hell does a bilobed stomach mean? Dilated renal pelvis-- deformity or just urine back up? Do I call Keith, it's a huge day for him at work? I don't have anybody else to call. OMG. He might not be able to breathe well. His heart might have defects too. O.M.G. Will he die? Will he even be born? I HAVE to call Keith.
Is my folic acid supplement not enough? Will potatoes do that? I mean, that's all I've wanted to eat for like 3 months now. Can amoxicillian do that? I've been on it twice during the pregnancy....
Are those crazy strong kicks at 22 weeks because he doesn't have any coordination? Is my baby hurting, is that why he is constantly rolling and kicking and squirming? I don't remember the other two being this active.
At the office (because I have patients coming in this afternoon) Keith calls. I tell him. As much as I can. I'm sure he can't understand much. I just keep telling him and me, it could be VERY mild... it could be incredibly severe, but it COULD be VERY mild. I have to get it together, the world doesn't stop just because your world falls apart. I have patients coming. I have to be a doctor. I have to get it together.
Somehow I make it through the next 2 hours. I get home. Keith, red eyed at the table, computer open. I start to recant the afternoon. Keith just keeps saying "I don't understand. We don't have anything in our family". I know. I know. Sometimes there are just screw ups. I start explaining what the cerebellum is, what the vermis is, what the ventricles do, what they aren't doing, what the renal pelvis is, what it could mean. It can't be Downs. We don't have it in our family. I know. I know. Sometimes things just get screwed up. I explain spina bifida and what a meningiocele is. I finally know why I went to chiropractic school. This moment. This day. To be able to calmly explain the intricacies of the central nervous system. We both cry.
I slept on the floor with my boys, holding the hand of the littlest and watching the eldest.
The waiting is the hardest part. I'm headed to the appointment right now. A mix of emotions. Hopeful. Scared to death. Furious that somehow life just keeps rolling along around me. I still had to make lunch for the boys. I still had to get dressed. I still had to see patients. Nauseated. Shaking. Terrified. With every move my little Everett makes. Does he mean to move? Can he even help it? Is he hurting? Will he see? Will he walk? Will he make it?
I suppose we're about to go find out our chances. And may we be equipped to handle whatever is given.
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