It has been almost six months now, and I have yet to find the words to write the story of your birth. Not ironically, it is those moments--the last flutters, the foreign sensations, the tears, the cradling, the love, the heartbreak--that lurk in the corners of my mind, presenting themselves at the most awkward times and bringing me back. Bringing me right back. Six months of wrangling such memories has taught me to give them boundaries, however. I do not dismiss them, as that is essentially impossible, but instead I tell them to wait. Not now. I will deal with you later. I will visit you again when I have time, space. I will visit you when I can feel that pain with the intensity I need to, when I can cry those tears freely, as long as I want, because my baby died, and I'm not over it.
But I am okay. In my logical mind, I know that everything is as it should be. I know your soul is whole and well and part of my life for a very important reason. We probably planned it this way. And yet, that very human, very mortal part of me, that instinctual mother, does not understand. They say when you have children, it's like watching a piece of your heart walk around outside of your body. It's like that, exactly that, only you are gone, and so is that piece of me. There is an emptiness in this world, my current, tangible reality, that will never be filled.
And still your little life, your death, your absence, have changed me in ways I could not have imagined--changes that I am now grateful for, that I would not give up if I had the chance. Your birth and death were a beginning and end for me, too.
I started to write it a couple weeks ago, and it just comes out wrong. I cannot find the tone, I can't find the words. Do I just write it, the standard play-by-play of events that traditionally ends with pictures of squirmy newborns, a lament about sleepless nights and the new found love that comes with the discovery of your child? How do I put it that, in the moments after you were born, everyone was crying but you? That I witnessed my own father cry for the very first time? That there were no apgar scores or measurements, just a nurse bringing you in your blanket and asking if I wanted to see your defect? How do I explain the last time I felt you move, that I still wonder if it was the last time you moved at all? Are there even words?
Monday, June 29, 2009
Wednesday, June 24, 2009
a hope and not a promise
I was so honored to learn that I was chosen for the spring award at Glow in the Woods this morning. I have found so much comfort in the writing there over the past 6 months, and to think that others may benefit from mine as well is a wonderful feeling. It is a group that I wish none of us ever had to belong to, but I am so grateful to have found it.
The award prompted me to read through your letters again--something I rarely do. As I said in my very first post: sometimes I want to reach out and grab someone and make them understand, bring them with me to that place and make them feel the terror, the sadness. The heartbreak.
I certainly succeeded, at least with myself. Every post took me right back to those moments, quickly reintroducing me to that dark gaping hole that I have so successfully been distracting myself from. It was if I was reminded: oh yes, this happened. Oh yes, it hurts. Oh yes, it will hurt forever.
And then I get angry. How could I have let myself forget? I think of you every day, and yet I somehow manage to evade that all too familiar, consuming heartache that goes along with your memory on a daily basis. How is it that the flood of tears that came today, the gut-wrenching sobs that are seemingly beyond my control, have come to feel right? Necessary. Comfortable? Perhaps it is that they are all I have left. If I am not grieving you, then did you really exist?
We moved out of the only house you ever lived in last week. It was the same house that became my refuge, my cave, the one place that I was allowed to stay in my pajamas for days and just miss you, after you died. As I swept every particle of dust out of the empty corners, I found pockets of grief that had slipped under furniture, waiting for the moment they might be visited again. Every inch of the house had an energy in it, and it was bittersweet leaving it behind. We are embarking on lots of new beginnings this year, and yet I cannot bear the thought of putting your life, your death behind me, into a dusty mental closet of bad memories. You are more than that. You will always be more than that.
The weeks are ticking away in the pregnancy with your sibling, and I find myself starting to wish time away again. I want it to be July, when we will learn if the baby's spine is closed, I want it to be December, when (God willing) I will hold the little one, I want time to pass for this and that until some little voice kicks in and screams in my head STOP! This could be all you get! And I try to cherish it, but there is still so much uncertainty.
People ask the incessant, obligatory question, "how are you feeling?" and I have little to say. I tell them I am tired, mostly, and they laugh and say "nap while you can, those days are numbered!" I smile, because that is the only appropriate response, but inside I am saying "yes, I can only hope to be so lucky." I can only hope to be spending sleepless nights with a screaming, healthy baby, the kind that most people take for granted.
I can only hope.
The award prompted me to read through your letters again--something I rarely do. As I said in my very first post: sometimes I want to reach out and grab someone and make them understand, bring them with me to that place and make them feel the terror, the sadness. The heartbreak.
I certainly succeeded, at least with myself. Every post took me right back to those moments, quickly reintroducing me to that dark gaping hole that I have so successfully been distracting myself from. It was if I was reminded: oh yes, this happened. Oh yes, it hurts. Oh yes, it will hurt forever.
And then I get angry. How could I have let myself forget? I think of you every day, and yet I somehow manage to evade that all too familiar, consuming heartache that goes along with your memory on a daily basis. How is it that the flood of tears that came today, the gut-wrenching sobs that are seemingly beyond my control, have come to feel right? Necessary. Comfortable? Perhaps it is that they are all I have left. If I am not grieving you, then did you really exist?
We moved out of the only house you ever lived in last week. It was the same house that became my refuge, my cave, the one place that I was allowed to stay in my pajamas for days and just miss you, after you died. As I swept every particle of dust out of the empty corners, I found pockets of grief that had slipped under furniture, waiting for the moment they might be visited again. Every inch of the house had an energy in it, and it was bittersweet leaving it behind. We are embarking on lots of new beginnings this year, and yet I cannot bear the thought of putting your life, your death behind me, into a dusty mental closet of bad memories. You are more than that. You will always be more than that.
The weeks are ticking away in the pregnancy with your sibling, and I find myself starting to wish time away again. I want it to be July, when we will learn if the baby's spine is closed, I want it to be December, when (God willing) I will hold the little one, I want time to pass for this and that until some little voice kicks in and screams in my head STOP! This could be all you get! And I try to cherish it, but there is still so much uncertainty.
People ask the incessant, obligatory question, "how are you feeling?" and I have little to say. I tell them I am tired, mostly, and they laugh and say "nap while you can, those days are numbered!" I smile, because that is the only appropriate response, but inside I am saying "yes, I can only hope to be so lucky." I can only hope to be spending sleepless nights with a screaming, healthy baby, the kind that most people take for granted.
I can only hope.
Monday, June 1, 2009
I love my baby no matter what
Termination.
Ter`mi*na"tion\, n.
1. The act of terminating, or of limiting or setting bounds; the act of ending or concluding; as, a voluntary termination of hostilities.
2. End in time or existence; as, the termination of the year, or of life; the termination of happiness.
The word felt dirty to me, wrong in my mouth, for the longest time. To this day, I hesitate before saying it out loud. It is so harsh, so final, so totally void of the emotion and agony that went into the decision. Certainly, in the early days after the diagnosis, I resented the word, I danced around it, always calling it something different, because it was different, it had to be. In genetic counseling, it was always "ending the pregnancy" or "interrupting the pregnancy," as if those were any better. I worded it in any other way I could find, I still do. But then there it was, scribbled all over my discharge papers from the hospital, closely followed by fetal anomaly, fetal demise, 21 weeks.
It wasn't until one day, after the diagnosis but before your birth, when I decided to type the word, hating every letter, into the search field of the Baby Center Community, that it began to resonate with me. There it was, a group full of people going through exactly the same thing I was. Suddenly I was not alone. I was not a monster for even considering it.
I cringe when I see people say that termination would never be an option for them. It was not an option for me, either. Even in the initial phone call when Patricia mentioned that the specialists would be discussing my "options" with me, my head spun. What options? This was my baby. There were no options.
And then...well, everything changed. What happens when all the options are awful? What happens when life is not necessarily the best option for your own child? What happens when you have to choose their well being or yours? Just like any mother, you choose your child's.
There is so much misunderstanding surrounding termination for medical reasons. Those who have never been in our shoes and never plan to be, claim that they will love their babies no matter what. As if the decision is simple, black and white: if you love your baby, you will keep them, no matter what. But choosing to let a baby go is perhaps one of the hardest, most sacrificial demonstrations of love there is. I do not know of anyone who has taken the decision lightly. Choosing to let a baby go who would otherwise be born into a life of suffering (or no life at all) is a sacrifice. I will suffer my whole life so that you do not have to feel one moment of pain. I will spare you, even though it hurts more than anything I could ever have imagined. I carry the weight of this so you will never have to.
It is not easy.
As we get further into the pregnancy with your sibling, I have been thinking a lot about how I will handle things if there is a problem again. Some part of me wants to say it doesn't matter, I will keep this baby no matter what. But then, does that mean I love this baby more? And if I consider putting my own well being before this baby's, does that mean I love this baby less? It is so tempting to say that love has nothing to do with it, but essentially it is all about love. You are both my children and I am constantly humbled by the amount of love I am capable of in my new, unique motherhood.
I love you both, no matter what.
Ter`mi*na"tion\, n.
1. The act of terminating, or of limiting or setting bounds; the act of ending or concluding; as, a voluntary termination of hostilities.
2. End in time or existence; as, the termination of the year, or of life; the termination of happiness.
The word felt dirty to me, wrong in my mouth, for the longest time. To this day, I hesitate before saying it out loud. It is so harsh, so final, so totally void of the emotion and agony that went into the decision. Certainly, in the early days after the diagnosis, I resented the word, I danced around it, always calling it something different, because it was different, it had to be. In genetic counseling, it was always "ending the pregnancy" or "interrupting the pregnancy," as if those were any better. I worded it in any other way I could find, I still do. But then there it was, scribbled all over my discharge papers from the hospital, closely followed by fetal anomaly, fetal demise, 21 weeks.
It wasn't until one day, after the diagnosis but before your birth, when I decided to type the word, hating every letter, into the search field of the Baby Center Community, that it began to resonate with me. There it was, a group full of people going through exactly the same thing I was. Suddenly I was not alone. I was not a monster for even considering it.
I cringe when I see people say that termination would never be an option for them. It was not an option for me, either. Even in the initial phone call when Patricia mentioned that the specialists would be discussing my "options" with me, my head spun. What options? This was my baby. There were no options.
And then...well, everything changed. What happens when all the options are awful? What happens when life is not necessarily the best option for your own child? What happens when you have to choose their well being or yours? Just like any mother, you choose your child's.
There is so much misunderstanding surrounding termination for medical reasons. Those who have never been in our shoes and never plan to be, claim that they will love their babies no matter what. As if the decision is simple, black and white: if you love your baby, you will keep them, no matter what. But choosing to let a baby go is perhaps one of the hardest, most sacrificial demonstrations of love there is. I do not know of anyone who has taken the decision lightly. Choosing to let a baby go who would otherwise be born into a life of suffering (or no life at all) is a sacrifice. I will suffer my whole life so that you do not have to feel one moment of pain. I will spare you, even though it hurts more than anything I could ever have imagined. I carry the weight of this so you will never have to.
It is not easy.
As we get further into the pregnancy with your sibling, I have been thinking a lot about how I will handle things if there is a problem again. Some part of me wants to say it doesn't matter, I will keep this baby no matter what. But then, does that mean I love this baby more? And if I consider putting my own well being before this baby's, does that mean I love this baby less? It is so tempting to say that love has nothing to do with it, but essentially it is all about love. You are both my children and I am constantly humbled by the amount of love I am capable of in my new, unique motherhood.
I love you both, no matter what.
Thursday, April 30, 2009
I'm a mess today. It's been creeping up on me in the last week and seems to have culminated into this huge overwhelming feeling of hopelessness today.
I have been doing so well. Even after Jesse lost his job, I was hopeful, confident that it was all part of the Big Picture, that it was probably meant to lead us to something better. But as the time continues to pass and the "better outcome" I was hoping for seems less and less likely, my optimism is admittedly suffering. In fact, I am starting to wonder if anything is ever going to go right again.
And it's things like these that begin to loosen the stiches of the patches I have so carefully sewn over that dark, gaping hole you left me with. I start to feel that bare, vulnerable, empty place again, and it makes me realize that this is far from over. That this will never be over, not really. Perhaps someday I will patch the hole more permanently, but it will never be gone.
Tomorrow it will be May. May, which still conjures a bit of anticipation somewhere in my heart. It is the month you would have been born, the month I began waiting for way back in September. It's hard to imagine how different things would have been if it had all gone according to plan. I try not to hold on to that image, because you were not well from the beginning. It wouldn't have been as I expected no matter what. I just had so many expectations. I should have known better.
So this May we will be seeing your little sibling for the first time, who took up residence a few weeks ago. Naturally, I am fearing the worst, just as I did with you, but more so this time. It's funny, in the weeks and months after your death, I became obsessed with the idea of getting pregnant again. On some subconscious level, although I tried to convince myself otherwise, I believed it would fix everything, that it would fill the big empty hole you left. But it didn't. It won't. You are not replaceable. Even getting the chance to experience pregnancy again did not come with the joy I expected it to. That blind, hopeful happiness I had with you is gone, probably forever. In its place is uncertainty and a complete and utter lack of expectations. Oh and a big empty hole that makes its presence ever known.
I'm just so sad Layla. I want you to be safe in my belly, getting ready to be born. I want to hear you cry, to see your eyes, to snuggle with you. Some days I still feel like I could wake up and realize this was all a dream.
I have been doing so well. Even after Jesse lost his job, I was hopeful, confident that it was all part of the Big Picture, that it was probably meant to lead us to something better. But as the time continues to pass and the "better outcome" I was hoping for seems less and less likely, my optimism is admittedly suffering. In fact, I am starting to wonder if anything is ever going to go right again.
And it's things like these that begin to loosen the stiches of the patches I have so carefully sewn over that dark, gaping hole you left me with. I start to feel that bare, vulnerable, empty place again, and it makes me realize that this is far from over. That this will never be over, not really. Perhaps someday I will patch the hole more permanently, but it will never be gone.
Tomorrow it will be May. May, which still conjures a bit of anticipation somewhere in my heart. It is the month you would have been born, the month I began waiting for way back in September. It's hard to imagine how different things would have been if it had all gone according to plan. I try not to hold on to that image, because you were not well from the beginning. It wouldn't have been as I expected no matter what. I just had so many expectations. I should have known better.
So this May we will be seeing your little sibling for the first time, who took up residence a few weeks ago. Naturally, I am fearing the worst, just as I did with you, but more so this time. It's funny, in the weeks and months after your death, I became obsessed with the idea of getting pregnant again. On some subconscious level, although I tried to convince myself otherwise, I believed it would fix everything, that it would fill the big empty hole you left. But it didn't. It won't. You are not replaceable. Even getting the chance to experience pregnancy again did not come with the joy I expected it to. That blind, hopeful happiness I had with you is gone, probably forever. In its place is uncertainty and a complete and utter lack of expectations. Oh and a big empty hole that makes its presence ever known.
I'm just so sad Layla. I want you to be safe in my belly, getting ready to be born. I want to hear you cry, to see your eyes, to snuggle with you. Some days I still feel like I could wake up and realize this was all a dream.
Wednesday, April 1, 2009
conception
I knew I was pregnant with you before the test told me so, even though I was in some state of denial before I got the proof. I remember going to lunch with my dad in that seemingly never ending inbetween time and feeling as though I was going to gag on the chicken in my tortilla soup. I remember the nagging voice in the back of my head saying "see! You're pregnant! You are!" and I felt like I would burst with the desire to tell someone, anyone, about the possibility of you. But I didn't. In fact, even though I could not hug anyone without the feeling of fire across my chest, and I could smell a simple piece of peanut butter toast from the next room so strongly that it was dizzying, I could not believe it.
It was not the time, after all. We were supposed to wait. I thought of my old manager, who had fallen pregnant unexpectedly, telling newly-engaged me to watch out: once you are married, it happens more easily. I didn't know what she meant at first, but soon I got it. The security and societal acceptance of marriage makes you lazy, more willing to take risks. Suddenly, in the midst of analyzing every twinge in my body, I knew all to well how she must have felt.
I was excited. Well, excited doesn't even begin to touch the surface of it, really. My biological clock had swung into gear a full year before and you were the manifestation of my wildest dreams. I knew it was not a good time to try for a baby, but I prayed for it to happen by accident.
It was September 9th when I found out that you did, in fact, exist. After an ambiguous line the day before, Jesse insisted we get the digital tests. He wanted it in black and white, no more analyzing little pink lines. I woke up earlier than usual, anxious to know for sure, and my heart pounded in my throat as I watched the little hourglass begin to flash. At some point, I turned away from it, the anticipation too overwhelming. "It's going to say Not Pregnant," I told myself about a million times before turning around. When I finally did, I glanced at it a few times before picking it up to examine it more closely, sure I had missed the "Not" part of it. But there was definitely only one word across the display.
I loved you from that moment on. I did not know that our time together would be so short or that you would change me in ways I could not have imagined. I loved you. I still do, every moment.
It was not the time, after all. We were supposed to wait. I thought of my old manager, who had fallen pregnant unexpectedly, telling newly-engaged me to watch out: once you are married, it happens more easily. I didn't know what she meant at first, but soon I got it. The security and societal acceptance of marriage makes you lazy, more willing to take risks. Suddenly, in the midst of analyzing every twinge in my body, I knew all to well how she must have felt.
I was excited. Well, excited doesn't even begin to touch the surface of it, really. My biological clock had swung into gear a full year before and you were the manifestation of my wildest dreams. I knew it was not a good time to try for a baby, but I prayed for it to happen by accident.
It was September 9th when I found out that you did, in fact, exist. After an ambiguous line the day before, Jesse insisted we get the digital tests. He wanted it in black and white, no more analyzing little pink lines. I woke up earlier than usual, anxious to know for sure, and my heart pounded in my throat as I watched the little hourglass begin to flash. At some point, I turned away from it, the anticipation too overwhelming. "It's going to say Not Pregnant," I told myself about a million times before turning around. When I finally did, I glanced at it a few times before picking it up to examine it more closely, sure I had missed the "Not" part of it. But there was definitely only one word across the display.
I loved you from that moment on. I did not know that our time together would be so short or that you would change me in ways I could not have imagined. I loved you. I still do, every moment.
Friday, March 27, 2009
Monday
The grassy fields outside the window blurred together, the pavement flying out from under us as we sped toward...what, exactly? An answer. The moment of truth. The tears came and went, a torrential flood of uncertainty and fear in one moment, and a vast and empty absence in the next. My own mother's words of comfort drifted in and out of my consciousness, sticking sometimes, but otherwise lost in the overwhelming sense of doubt that had made a home in my heart over the past 12 hours. I was awed that a single phone call had changed everything, just like that.
I had been taken by surprise, and I resented it forcefully. I had always been one to expect the worst, in hopes of being surprised, but my careful expectations for the pregnancy had fallen on deaf ears all around me. Oh, you have nothing to worry about, they would say, confidently, their faith in the process affirmed by their own experiences, which, if not flawless, had certainly resulted in a healthy baby. I too, had naively begun to believe in my own invincibility. I was aware of many of the things that could go wrong, and I feared the ever looming possibility, but in a general way. Yes, those things happened, but they would happen to other people. Not me. Not my baby. I was young, healthy (enough), free of family history. There were people out there who didn't know they were pregnant until they went into labor, and their babies were fine. The odds were in my favor.
Oh, the odds, which I would soon come to loathe and then, eventually, cling to for the hope of the future. In the moment though, the odds were insensitive, irrelevant. Your tiny little life and the impact you would make could not be measured in numbers. For now, there was just raw emotion, fear. Love. We passed a flock of sheep and my eyes fell immediately on the mothers, guarding and nurturing their babies. My heart swelled, the tears beginning to spill, and the sight of them (because even they had healthy babies) begged the question that had been brewing since the night before: "Why me?"
We were late. The receptionist handed me a clipboard of paperwork to fill out and I planted myself in the waiting room, both of my parents at my side, to begin the wait. When I had finished the paperwork and we had still not been called, I turned to studying the pattern in the carpet, the glass artwork that hung on the wall, the couple who sat opposite us, holding hands. Were they here for the same reason? Was there someone else out there who was awaiting the final word on their baby's future? Certainly, there couldn't be.
Patricia had warned me that the genetic counselor might be overwhelming, scary, a woman of facts and little compassion. However, when Kathryn called my name and led us back to her office, her voice was soft and sympathetic. I felt immediately at ease. She planted a box of tissue in front of us as we took our seats. She warned us that she would be laying out the facts for us, drawing a picture of what the doctor would be looking for in our second, more detailed ultrasound. We listened attentively as she explained the varying degrees of severity in spina bifida, and a tiny bit of hope flickered to life in my heart. Maybe I could deal with this, maybe it was not severe, maybe all was not lost.
"It's also possible," she said, coming to the end of her explanation, "that we will look today and see that everything looks appropriate." My mom and I glanced at each other and sighed, relieved that she had even mentioned it as a possibility. We were hopeful, and yet there was an unspoken "but..." that seemed to follow her sentence. I knew it was not likely, and yet I clung to the hope that maybe you were okay, or even if there was spina bifida, it would be small, minor.
We were led to the darkened ultrasound room and I assumed my now familiar position on the table. The sonographer breezed in, cheerful, asking if we knew your sex yet and explaining her role in making the diagnosis. As she began sliding the probe around my belly, the flicker of hope in my heart grew brighter. There were your perfect arms, your perfect legs, your perfect heart and kidneys. I watched you, in awe, as you put your hands in front of your face, and then the tiny movements that shook your whole body.
"Oh, it looks like baby has hiccups!" The sonographer exclaimed. There you were, my daughter with the hiccups. It was the first time that you became very real, very precious, very...human. It was a moment I would later recount to Jesse with tears streaming uncontrollably down my face. It was the first thing that would inspire tears in his eyes, too.
And then it was over. The screen went blank and the sonographer went off to consult with the doctor. In a matter of minutes, he was joining us, soft spoken, with a look in his eyes that said it all. He perched on the stool beside me and put a hand on my knee, gentle, consoling me already for what he had not said yet.
The facts poured out and the flicker of hope was abruptly extinguished. He continued, that same look in his eyes, demonstrating on my own back the point that yours had not closed. They went over what this meant for your life, and it was not good news for you, my precious baby, the baby I had carried and dreamed of and planned for since the beginning of your existence in September.
And then? From a very gray area diagnosis, they asked me to make a very black and white decision. Either I would bring you into this life of hardship and challenges, or I wouldn't.
The air seemed to leave the room as the weight of the decision sunk in. How could I possibly be the one to take your life? And yet, how could I bring you into a body that was not properly designed for this world? How could I possibly decide?
Do not judge me for what I have done
For you have not walked in my shoes
She was not your daughter
You did not love her and long for her
As I did and do and always will
You did not feel her and plan for her
And know her and promise her that
You would always take care of her
As I did
She was my daughter
You did not hear the doctors say
That she would be sick
That she already was sick
And that she would be sick until
The day she died
You did not pray to God that the
Second ultrasound would confirm
Your hopes that she would be healthy
You did not see the tear
In the doctor’s eye when he
Confirmed the diagnosis
You did not pray to God for
Her to never have to suffer
For him to take her to Heaven
Where there is no pain
You did not feel her pain
I did
I am her mother
When you simply said to me
That I don’t have the right
To take her life
I know you did not feel my struggle
When you simply said to me
That I have to take her life
For her to be happy
I know you did not feel my struggle
I do not know what God wanted for her
I do not have His wisdom
And neither do you
I know that He loves me
I felt His love through the people He gave me
I know that God did feel my struggle
All I ask from you now
Is that you pray for my daughter
And do not judge me for what I have done
For you have not walked in my shoes
I am her mother
I Am Her Mother
By Joan Vander Male
I had been taken by surprise, and I resented it forcefully. I had always been one to expect the worst, in hopes of being surprised, but my careful expectations for the pregnancy had fallen on deaf ears all around me. Oh, you have nothing to worry about, they would say, confidently, their faith in the process affirmed by their own experiences, which, if not flawless, had certainly resulted in a healthy baby. I too, had naively begun to believe in my own invincibility. I was aware of many of the things that could go wrong, and I feared the ever looming possibility, but in a general way. Yes, those things happened, but they would happen to other people. Not me. Not my baby. I was young, healthy (enough), free of family history. There were people out there who didn't know they were pregnant until they went into labor, and their babies were fine. The odds were in my favor.
Oh, the odds, which I would soon come to loathe and then, eventually, cling to for the hope of the future. In the moment though, the odds were insensitive, irrelevant. Your tiny little life and the impact you would make could not be measured in numbers. For now, there was just raw emotion, fear. Love. We passed a flock of sheep and my eyes fell immediately on the mothers, guarding and nurturing their babies. My heart swelled, the tears beginning to spill, and the sight of them (because even they had healthy babies) begged the question that had been brewing since the night before: "Why me?"
We were late. The receptionist handed me a clipboard of paperwork to fill out and I planted myself in the waiting room, both of my parents at my side, to begin the wait. When I had finished the paperwork and we had still not been called, I turned to studying the pattern in the carpet, the glass artwork that hung on the wall, the couple who sat opposite us, holding hands. Were they here for the same reason? Was there someone else out there who was awaiting the final word on their baby's future? Certainly, there couldn't be.
Patricia had warned me that the genetic counselor might be overwhelming, scary, a woman of facts and little compassion. However, when Kathryn called my name and led us back to her office, her voice was soft and sympathetic. I felt immediately at ease. She planted a box of tissue in front of us as we took our seats. She warned us that she would be laying out the facts for us, drawing a picture of what the doctor would be looking for in our second, more detailed ultrasound. We listened attentively as she explained the varying degrees of severity in spina bifida, and a tiny bit of hope flickered to life in my heart. Maybe I could deal with this, maybe it was not severe, maybe all was not lost.
"It's also possible," she said, coming to the end of her explanation, "that we will look today and see that everything looks appropriate." My mom and I glanced at each other and sighed, relieved that she had even mentioned it as a possibility. We were hopeful, and yet there was an unspoken "but..." that seemed to follow her sentence. I knew it was not likely, and yet I clung to the hope that maybe you were okay, or even if there was spina bifida, it would be small, minor.
We were led to the darkened ultrasound room and I assumed my now familiar position on the table. The sonographer breezed in, cheerful, asking if we knew your sex yet and explaining her role in making the diagnosis. As she began sliding the probe around my belly, the flicker of hope in my heart grew brighter. There were your perfect arms, your perfect legs, your perfect heart and kidneys. I watched you, in awe, as you put your hands in front of your face, and then the tiny movements that shook your whole body.
"Oh, it looks like baby has hiccups!" The sonographer exclaimed. There you were, my daughter with the hiccups. It was the first time that you became very real, very precious, very...human. It was a moment I would later recount to Jesse with tears streaming uncontrollably down my face. It was the first thing that would inspire tears in his eyes, too.
And then it was over. The screen went blank and the sonographer went off to consult with the doctor. In a matter of minutes, he was joining us, soft spoken, with a look in his eyes that said it all. He perched on the stool beside me and put a hand on my knee, gentle, consoling me already for what he had not said yet.
The facts poured out and the flicker of hope was abruptly extinguished. He continued, that same look in his eyes, demonstrating on my own back the point that yours had not closed. They went over what this meant for your life, and it was not good news for you, my precious baby, the baby I had carried and dreamed of and planned for since the beginning of your existence in September.
And then? From a very gray area diagnosis, they asked me to make a very black and white decision. Either I would bring you into this life of hardship and challenges, or I wouldn't.
The air seemed to leave the room as the weight of the decision sunk in. How could I possibly be the one to take your life? And yet, how could I bring you into a body that was not properly designed for this world? How could I possibly decide?
Do not judge me for what I have done
For you have not walked in my shoes
She was not your daughter
You did not love her and long for her
As I did and do and always will
You did not feel her and plan for her
And know her and promise her that
You would always take care of her
As I did
She was my daughter
You did not hear the doctors say
That she would be sick
That she already was sick
And that she would be sick until
The day she died
You did not pray to God that the
Second ultrasound would confirm
Your hopes that she would be healthy
You did not see the tear
In the doctor’s eye when he
Confirmed the diagnosis
You did not pray to God for
Her to never have to suffer
For him to take her to Heaven
Where there is no pain
You did not feel her pain
I did
I am her mother
When you simply said to me
That I don’t have the right
To take her life
I know you did not feel my struggle
When you simply said to me
That I have to take her life
For her to be happy
I know you did not feel my struggle
I do not know what God wanted for her
I do not have His wisdom
And neither do you
I know that He loves me
I felt His love through the people He gave me
I know that God did feel my struggle
All I ask from you now
Is that you pray for my daughter
And do not judge me for what I have done
For you have not walked in my shoes
I am her mother
I Am Her Mother
By Joan Vander Male
Sunday, March 15, 2009
that moment
It still amazes me, the tiniest, most unexpected things that can bring on a downward spiral. Today I was heating a pot of water on the stove, the steam beginning to roll around me, when suddenly the memories of your birth rushed in, without warning. Or perhaps the more appropriate term would be your death, as it is that moment that I still agonize over.
The connection is not as random as it might seem. There was a moment, weeks ago, though it seems much longer, when I stood over a pot of boiling water, unable to stop the memories from flooding in. I remember standing there, trying to swallow the tears, because I had cried enough, and yet the memories kept coming in flashes: the moment you left my body, the nurse bringing you to me for the first time and asking if I wanted to see your defect, and why, why were you not alive? When did you go? I stood there, the steam billowing, the tears sliding down my cheeks unwillingly, and shook my head, as if to say, enough. Enough, enough, I can't take anymore.
The fact that you were not born alive was insignificant when I left the hospital. I knew going in that you were not going to live, one way or another. And even when the nurses told me that it was possible that you might be born alive, I did not expect it. I could not. I wouldn't. I was done with expectations, and when you were born lifeless, I was not surprised. It was okay.
It wasn't until days, weeks, later, boiling water on the stove, that I began to contemplate the moment that you died. Why did you die? Were you scared? Did you struggle? Suddenly, that unnoticed moment that your heart stopped beating consumed me, and I felt an overwhelming sense of failure.
I got my hair cut the other day. The woman snipped away for awhile before asking the question, the one I had dreaded, the one I had not prepared my answer for yet. "Do you have any children?" Maybe I should have just said no. But I felt the need to tell her, a random stranger, that I had lost you, my first and only baby. She gushed with sympathy and then told me that she, too, had lost her first baby, when she was 12 days old.
"That's worse," she said gravely, "after you get attached."
Is it, though? I don't and hope to never know both sides of the coin, but she got 12 days. She got to see life in her daughter's eyes and tell her she loved her before she left his world. She got memories. And as far as attachment? Maybe I am not in the majority, but my attachment began the moment that piece of plastic flashed the word 'Pregnant' at me. I began to exist because of you. There was still life as I knew it, but my priorities had changed. My sole purpose was to protect you, to give you the best, no matter what it took.
Did she have to decide that what was best for her daughter was to let her go? Probably not.
Does she have to live with the unique weight of guilt that comes with that? Probably not.
Is her loss worse, then? I can't say. It's almost like comparing apples to oranges.
In the days that followed the diagnosis, I would not listen to your heartbeat, I did not want another ultrasound. I wanted to believe that you were already leaving, that perhaps you were already gone.
And now, oh what I would give to hear your heart beating one more time. See you wiggling, hiccuping on the ultrasound screen, one more time. And I hate myself for not cherishing, clinging to, every last second I had with you.
But this life was not for you
though I learned from you
that beauty need only be a whisper.
The connection is not as random as it might seem. There was a moment, weeks ago, though it seems much longer, when I stood over a pot of boiling water, unable to stop the memories from flooding in. I remember standing there, trying to swallow the tears, because I had cried enough, and yet the memories kept coming in flashes: the moment you left my body, the nurse bringing you to me for the first time and asking if I wanted to see your defect, and why, why were you not alive? When did you go? I stood there, the steam billowing, the tears sliding down my cheeks unwillingly, and shook my head, as if to say, enough. Enough, enough, I can't take anymore.
The fact that you were not born alive was insignificant when I left the hospital. I knew going in that you were not going to live, one way or another. And even when the nurses told me that it was possible that you might be born alive, I did not expect it. I could not. I wouldn't. I was done with expectations, and when you were born lifeless, I was not surprised. It was okay.
It wasn't until days, weeks, later, boiling water on the stove, that I began to contemplate the moment that you died. Why did you die? Were you scared? Did you struggle? Suddenly, that unnoticed moment that your heart stopped beating consumed me, and I felt an overwhelming sense of failure.
I got my hair cut the other day. The woman snipped away for awhile before asking the question, the one I had dreaded, the one I had not prepared my answer for yet. "Do you have any children?" Maybe I should have just said no. But I felt the need to tell her, a random stranger, that I had lost you, my first and only baby. She gushed with sympathy and then told me that she, too, had lost her first baby, when she was 12 days old.
"That's worse," she said gravely, "after you get attached."
Is it, though? I don't and hope to never know both sides of the coin, but she got 12 days. She got to see life in her daughter's eyes and tell her she loved her before she left his world. She got memories. And as far as attachment? Maybe I am not in the majority, but my attachment began the moment that piece of plastic flashed the word 'Pregnant' at me. I began to exist because of you. There was still life as I knew it, but my priorities had changed. My sole purpose was to protect you, to give you the best, no matter what it took.
Did she have to decide that what was best for her daughter was to let her go? Probably not.
Does she have to live with the unique weight of guilt that comes with that? Probably not.
Is her loss worse, then? I can't say. It's almost like comparing apples to oranges.
In the days that followed the diagnosis, I would not listen to your heartbeat, I did not want another ultrasound. I wanted to believe that you were already leaving, that perhaps you were already gone.
And now, oh what I would give to hear your heart beating one more time. See you wiggling, hiccuping on the ultrasound screen, one more time. And I hate myself for not cherishing, clinging to, every last second I had with you.
But this life was not for you
though I learned from you
that beauty need only be a whisper.
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