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.

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.

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

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.

birth day

I awoke this morning, feeling a sense of significance about today, though I did not remember what it was right away. Slowly my mind chugged back into gear, until finally I remembered: my birthday. The 23rd annual celebration of the day I was delivered into this world, the day I first looked into my mother's eyes, the day I became my own separate entity and started walking my own path in this life.

I pulled myself out of bed with a struggle (it is always a struggle lately) and began the day, rejoining the world, as I do every day, with an odd sense of obligation. There was celebration to be had, there was family to embrace, and all of it came easily, with a smile that was genuine.

And yet...there was something missing. There is always something missing, isn't there? I don't know that it is you exactly, since I have come to accept that you are not going to share this life with me, that likely, you never were. Accepting it does not make it better though. In fact, the acceptance of your death has brought me a deep, underlying unhappiness, and still my mind gets caught up in that perpetual and illogical cycle of thoughts that follows the inevitable, unshakable question, "What if?"

My birthday is not the time for these endless, circular thoughts, or at least I wish it wasn't. But the thought remains that if things were different, you would have been here, sharing this day with me, hearing the joyful laughter and celebration from your cozy, warm little bubble inside my 30 week belly. If things were different, I would have been counting down the weeks until your arrival, preparing for the day of your birth, the moment I would look your eyes for the first time.

But things are not different, and perhaps part of the ache, the emptiness in my heart today, is that I will never get to bake you your 23rd birthday cake. I will never get to bring you balloons, call you at the moment you were born and tell you that 23 years ago, I was holding you for the first time, falling in love with you for the first time.

It saddens me that your birthday will never be a celebration. Your birth will forever be interchanged with your death, and how can ever I celebrate the loss of you? On your day, your January 9th, when we distinctly became two separate beings, I marveled at you. I swelled with pride that you were mine, I had created and birthed you, and yet you were leaving me, you were already gone.

I am learning to navigate this life without you, without the potential of you, but sometimes, especially on days like this, when laughter comes easily and the world is brighter, the gaping hole you left behind seems bigger, darker. Sometimes it is all I can do to keep from curling back into it. The grief is becoming comfortable now, instead of the other way around. At least when I am in that dark place, you are at the forefront. There is no going about my business or celebrating in the absence of you. You are all there is. Unfortunately, the dark place, the hole, is invisible to the rest of the world, and life continues to make demands of me that require me to step out, back into the light.

So here I am, standing at the starting line of my twenty-third year on this planet. It is a year, a birthday, that would have marked an entirely different beginning, if things were different. But no, if there is anything I have learned, it is that things just are, there is no getting around it.

I cannot wish it away. I wish I could.

marked

As the tattoo gun buzzed into life today, I felt that sense of fear that has become all too familiar in the past months. I knew that pain was imminent and my reaction was unpredictable. As she began, the needle piercing and sliding over my skin, the pain was vivid, sharp, and there were moments when it felt almost unbearable. And then, just as quickly, it was over, only to return again, fresh and sharp, and I unable to escape. I started to draw parallels between it and my experience in the past months: the pain coming and going, the grief ebbing and flowing, and the moments when I thought maybe I wouldn't make it.

But I did, in both cases, and when she finished, she left me with a wound that has become the physical representation of the one in my heart, my soul. It is a wound I will care for and tend to and then watch as it slowly begins to heal. But the mark it leaves will be with me forever. It will be the announcement to the outside world that you have changed me, that you are here, in my heart, never to be forgotten.

And you are with me, always.

Sunday

The phone call came around 7:00. I'm not sure why or how I remember that except that it was the first moment of what has become known as my new life. The message from my midwife came shortly after I had tentatively announced that you were a girl to the world via Facebook status. Her voice was different, and the strained way she had said "I need to speak with you," made my heart jump immediately into my throat. I knew there was something wrong, though as I dialed her number, hands shaking, I tried to convince myself that it was something else. It was not the ultrasound, it could not have been.

She answered quickly, too quickly, and her voice was gentle, soft, too soft. She took a breath and mentioned the ultrasound, asked if Jesse was home. My heart was beating out of my chest and I stumbled to tell her that no, I was alone.

"I don't have the best news," she said, and the words hit me like bricks, I can still hear them now as clearly as if she were speaking to me. In the seconds between my strained response of "okay" and her next words I prayed that she was just going to tell me that I had placenta previa or something equally benign that would simply mean I could not birth at home, with her. I even imagined my sigh of relief, telling her I had been so afraid she was going to say something was wrong with the baby.

She asked if I wanted to wait until Jesse was there to hear the news, probably imagining my reaction, wailing, screaming, who could know? But I could not possibly imagine hanging up the phone without knowing. And so, she began, gently breaking the news that would change my entire world, though I didn't know it at the time.

I was doubled over, elbows on my knees, staring at a spot in the carpet that I can still point out if someone asks. The ultrasound showed signs of spina bifida, did I know what that was? Yes. No. I had heard of it but I did not know what it was. She explained that it was a neural tube defect, that your spine had not closed properly. My head spun, imagining what on earth I could have done to cause this. I needed another ultrasound, I needed a specialist, I needed...

I needed my mom. I held it together through the rest of the conversation without crying, practically rushing her off the phone so I would not show her my weakness, even though I could have. The second I hung up, I crumpled, I fell apart, sliding off the bed and onto the floor. The phone slipped from my hand and my face contorted and the river of tears began their journey, rolling down my face and spilling onto the carpet, transforming me.

No. No, this was not happening. This was the subject of my worst nightmares, the sort of thing I worried about needlessly. These things did not happen to young, healthy people with no risk factors. In fact, this was not my baby they were talking about. It was not you. They had to have mixed up the paperwork. The ultrasound technician did not know what she was doing. She had to be mistaken. Not you. Not you.

I wailed. In the silence and solitude of my home, with no one to hear me, I wailed. I did not even know what was to come, and yet I cried, harder than I had ever cried. I was already lost. In the next week, I would learn more about your condition than I wanted to know, I would be faced with the worst decision I could possibly fathom, and I would make it. But at that time, I didn't know what was to come. Somewhere, I knew it was the end, the beginning of the end, but I had no idea, really.

So that Sunday night, I clung to every ounce of hope I could muster. I googled. I cried. I waited. All I could do was wait.