Culinary Mindfulness

Food. It nourishes us. It sustains our bodies and provides the fuel for us to experience life. For some, it is an adventure. An exploration of flavor and culture through taste and smell. For me, it is a therapist. Well, the food itself isn’t so much the therapist, though I have eaten a pint of heartbreak ice cream more than once in my journeys through young and fickle love. The therapy is actually in the preparation of food.

I cook. It’s very much a part of my identity these days. Sometimes, I feel almost as though I live in my kitchen, and I’m okay with that. I love the way that ingredients feel in my hands. I love the connections that they bring, the way that preparing food means that I am part of a larger process. From agricultural beginnings, to my hands, to the mouths of my family. I am the middle man. I can rinse a potato and imagine it nestled in the ground. I think about the mound that it was grown in, soil soft and damp, warmed by the sun. I feel all its bumps and knots and think about the way that it formed. Almost like the creation of a baby, I think about the specific set of circumstances that must be met in order for this one potato to grow. It grounds my anxious mind.

My family chooses to eat almost exclusively organic, local produce. This decision means that we also eat meals that are connected to the seasons. Living in the Midwest, you will not find us eating watermelon in December. Our seasonal menu connects us to the rhythms of our planet. We feel the ebb and flow of seasons in more than just our wardrobe and choice of recreational activities, we experience these shifts in the very food that we eat.

I believe that all of this means that we appreciate our food differently. I am so grateful for the way that food connects me to the earth, to the changing of the seasons, to the processes by which we grow and harvest. I am grateful for the way it connects me to the nourishment of my family, since nourishing their bodies is another way for me to show my love for them. I am so grateful when the berries come into season. Yum.

Finally, I am grateful for the meditation that I find in all of this. When I am quiet in the kitchen, feeling the ingredients in my hands, thinking about how they came to be here and working through the steps to combine them into something delicious and healthful, I am mindful. It is culinary mindfulness, and it is wonderful.

Fear, Masked as Intuition

All anxious people, in some way or another, believe themselves to be prophetic. If some small part of us did not believe this, we would not be so terrified of our negative thoughts. This notion occurred to me yesterday about an hour after one of the worst panic attacks that I have experienced thus far. I won’t get into what brought on the panic attack, but I have a healthy enough sense of humor to tell you that it involved my deepest fears about my youngest son’s well-being… and a tarot deck.

Yeah, anxiety makes you do crazy things.

Also, to all you anxious people… stay the heck away from tarot decks. Trust me.

Anyways, back to my revelation.

One of the things that I have struggled with, in terms of my anxiety, is determining the difference between intuition, and fear. We have all experienced moments of intuition in our lives. Those little nudges from your gut which influence the decisions that you make, or shed light on a path that you are meant to follow. Likewise, we have all experienced worry and fear about mysterious future happenings which are out of our control. I used to believe that it was difficult to tell the difference between intuition and fear, but the truth is that it is not difficult at all. All you need to do is define them. I stumbled across an article this morning which discussed the differences between intuitive notion and fear, and it has helped me tremendously in my efforts to differentiate the two.

In my experience, intuitive knowledge usually feels very detached. It is not emotionally driven. It does not incite fear. It comes as information or a sense of what you should do. It acts as a guide towards positive outcome. Fear, on the other hand, elicits an emotional and physical reaction. It bubbles in your gut, makes your heart race, it triggers your “fight or flight” reaction. It does not guide you in any particularly helpful direction, it simply urges you to run. Reading that article helped me to clearly define the way I experience both intuition and fear. Having done this, I can now view my thoughts and determine which category they best fit into. Most importantly, I can see, very clearly, that my feelings about the well-being of my youngest son fit, without a shadow of a doubt, into the category of fear. They do not fit any of the defining aspects of intuition. They do not guide me and they certainly do not come as detached or unemotionally driven. They do just the opposite, they inspire outright panic.

Does this realization mean that I am cured of my anxiety? Does it mean that I will never again fear for the well-being of my youngest son? Does it mean that I will never again suspect that my fears are some kind of premonitory knowledge? Definitely not. It does, however, give my logical mind some ammo against those fears, particularly when they show up masquerading as intuition.

For me, getting past anxiety is all about eureka moments like this one. It’s winning the little battles while you continue to fight the war.

To those of you out there who might be struggling with anxiety, you are not alone. Fight on!

Learning to Interpret “Doo”

When my youngest son was just learning to talk, he said “doo”, instead of “I love you” or “I love you, too.” Just, “doo”. It was the cutest thing, and because he is a very communicative and very affectionate child, he said it often.

It took me a while before I realized what he was saying, though. As is the case with most toddlers, he spoke a language all his own. I will never forget the day that I put it all together. We were in the living room of our home and my husband and I were watching him play, when I was overcome with the depth of my love for him. It was a “pinch me” moment, if you will. Full to the brim with feeling for this beautiful little person that we created, I lightly touched his arm, interrupting his focus on the toy he was playing with, and said “Silas, I love you.” Briefly, he looked up at me with his big, inquisitive blue eyes and said “Doo, Mama”, before returning his attention to his toy.

The realization came upon me like waves on a beach. Slowly at first, almost tentative, and then suddenly crashing all around me. I had heard “doo” before! Almost always after one of us told him that we loved him, and even sometimes on its own. Unsolicited “doos”!  My son, my beautiful son, had been telling me all this time, that he loved me too! Indeed he had even, on occasion, expressed his love for me without my prompting him. My heart, already a puddle on the floor, melted further.

Experiencing my grief has been a lot like learning to interpret “doo”. Writing helps me with this interpretation. In fact, sometimes I don’t know how I feel at all, until my hands pull the words from within my heart. Making things even more complicated, is that grief has a way of tricking you. Some days I feel almost normal. I don’t forget completely, but the ache will move from center stage, off to my peripheral. However, whenever I have a day like this, the pain usually returns before I go to sleep and, having been lessened for a time, its return becomes almost unbearable.

My grief has also been accompanied by a companion, with whom I was already acquainted – anxiety. My journey through Postpartum Anxiety after the birth of my youngest son is something that I am not shy about. It is a battle that I fought, and won. I am proud to have come through the other side of it, and equally as devastated to see it return.

One of the things that helped me through my most anxious moments, was to shine light on my deepest fears. People who live with anxiety are often not blind to the fact that their fears are irrational. In fact, it is because we know that our fears are irrational that we do not simply go around sharing them with others. We create shadowy corners within our minds and pile the fears into them. The problem is that, in doing this, we don’t actually make the fears go away. We simply give them a scary place to lurk. My therapist suggested that, instead, I give voice to my fears. This could be simply to myself, or to a trusted person, like my husband. I began doing this when my youngest son was a couple of years old and it helped me immensely. Getting my fears out of the dark helped the irrationality go from something I was aware of, to something I could feel. I began to see my fears as very unlikely, and they haunted me less and less.

Do you know what the worst thing that can happen to an anxious person is? It is experiencing something tragic and unlikely. For example, having an unborn baby diagnosed with a rare, and most severe form of a neural tube defect.

Yeah… it has not helped.

I have an excellent therapist, and we are working through the resurgence of my anxiety, but I must say that losing Clara has made me absolutely terrified of losing my youngest son. He has always been the focus of my anxiety, since it cropped up after he was born, and things are no different now. The curve ball, is that shining a light on the irrationality and unlikeliness of my fears is a less potent draught, having now lived through an “unlikely” nightmare.

One thing that we are doing differently this time, is that we are using medicine as a tool to combat my anxiety. This is something that I have, quite frankly, been too proud to do in the past. I now see and understand its value, and I am grateful that I have access to it. I do not think I will need to be on it forever, but right now, while I am still emotionally weak, it helps. It gets me back to center when my rational mind spirals away from me, and it lets me find my footing again.

Much like learning to interpret “doo”, I have to learn and teach myself a new emotional language, if I am ever going to win this second battle with anxiety. I know that I can get back to my peaceful mind, I just can’t see the whole path yet. I do believe, however, that I found where the trail begins – gratitude. When I focus on my gratitude, I can feel tendrils of peace reaching out towards my soul. I am grateful for every breath that I take. Grateful for every person in my life. I am beyond thankful for my children. Thankful for my brilliant husband. Eternally grateful for my loving family and friends. I am grieving, yes. I spend many of my days waging a quiet battle with fears that make my head spin and turn my insides rigid. But every time those sweet, blue eyes look at me, every time those little arms wrap around my neck, every time that little voice says “I wuv you, Mama.”, I am back in the living room 3 years ago, overcome by that “pinch me” moment, understanding “doo” for the first time, and feeling so grateful to have all of this.

Doo, friends.

One Thousand Stitches

For nearly a decade, I have worked wool. I am a knitter. I use needles, wool and my own two hands to create. I find peace in knitting. It is a practice, a meditation. Perhaps the sincerest way that I can gift my love is by knitting for another person. You see, a single knitted piece contains anywhere from hundreds to thousands of individual stitches. Each stitch formed, one by one, with my own hands. When a piece that I am working on is intended for another person, it is impossible to work so many stitches without thinking of that person regularly. With this in mind, a hand knitted piece, say a blanket, can be considered to contain at least a thousand individual thoughts. A thousand wishes. A thousand pieces of my heart.

I knitted such a blanket, for Clara. I chose the yarn because it reminded me of a nebula, all blacks, blues, purples and greens, and we had decided to do a space theme for her nursery. I had begun to affectionately refer to her as “Little Moon”.

I spent weeks agonizing over the pattern choice. Originally I had wanted to do something very dainty – a white lace perhaps. Something regal. However, my logical mind won out and I decided that, with a January birthday, a sensible, worsted weight, wide ribbed blanket would be more suitable. It would keep her warm. It would be… functional.

It seems ironic now that I would spend so much time choosing to knit a functional blanket that would, in the end, serve no function at all.

The blanket was not the only thing that I knitted for Clara. I also knitted a grey bonnet, and a single sock. I never made it to the sock’s mate, before receiving our diagnosis. These pieces of wool, worked into functional items, are pieces of my heart set aside for another. It hurts to put them away, even though that seems the right thing to do. About a week after Clara was gone, I bought a nice little box, covered in burlap fabric. In this box I placed her ultrasound pictures, the bonnet, the sock and the blanket. I also wrote a letter to her, and included it in the box. I thought that putting the items away might soothe the ache, as if giving them a home inside the box would feel the same as gifting them to the individual for whom they were intended.

It does not feel the same.

I believe, that when a knitted item is gifted, an exchange is made. I gift a thousand pieces of my heart, and the joy it brings to the recipient, the comfort it gives them, the way it fills their heart to know that they have been thought of, in turn, fills the void. The bonnet, the blanket and the single sock contain fragments of my heart that I cannot retrieve, and as such, they leave a hole that cannot be filled.

Unfortunately, there is no happy lesson here. Not yet, at least.

I suppose, if anything, I am grateful for the ability to gift a part of myself, and for the knowledge that these will not be the last gifts that I knit for others. I will continue to knit and give bits of my heart to those that I love. Continue this exchange of love. I will do so, however, with a hole in my heart. An emptiness in the shape of one thousand stitches. A blanket, a bonnet, and a single sock.

Hot Dogs & Learning to be Gentle

One time, not so long ago, I went to Portillo’s and ordered a Chicago dog, cheese fries and a vanilla milkshake, while simultaneously going through a late term abortion.

Let me explain, and don’t worry, I’ll keep this part brief. A surgical abortion is typically a 3 step procedure that involves 2 (very uncomfortable) days of dilating the cervix (this first process does not actually affect the fetus in any way), and then the actual surgery is performed on the 3rd day.

Cervical dilation is performed via the insertion of laminaria, which are sterile sticks made of seaweed. Now, you can stop holding your breath. I’m not going to talk any further about all the physical procedure stuff, today at least. I know it can be hard to read. It was important to offer this context, though, so that you understand what I mean when I say that I ordered a meal while simultaneously undergoing a late term abortion. For context on why I was undergoing this procedure. Please read the first post of this blog, Clara’s Story. Now, on with the post…

On the first day of my 3 day procedure, my husband and I arrived back home around 8pm and had not yet eaten dinner. We were waiting on my prescription of pain medication to be filled by our local pharmacy, and so we decided to go through the Portillo’s drive-thru to pick up some food while we waited. As we waited in our car, slowly driving along with the procession of Portillo’s patrons, I was struck by the realization that no one  around us had any idea what we were going through. I sat numbly in the passenger seat of our car, with laminaria sticks in my cervix, trying to process the impending loss of my daughter, a very much wanted child, and ordered a hot dog. The juxtaposition of my circumstances and my actions opened my eyes, and I realized that in any given moment we really do not know what someone might be going through.

For those of you who know me well, I do not think that I would be generally described as “gentle”. I am often loud. I am emotionally… intense. I feel and express my emotions with all the force of a freight train, barreling down the tracks. For this reason I am often drawn to slowness. Stillness and quiet do not come easily to me and they have become skills that I am eager to master. Yoga, meditation, knitting, cooking and gardening are all practices of mine that help me learn to be more quiet, deliberative and gentle. However, my experience in the Portillo’s drive-thru may have been the most valuable tool that I have had yet, in learning to be gentle. From now on, every store employee who is snippy with me, every waitress who gets my order wrong, every interaction that I have with another human that is not altogether satisfying, will serve as a reminder that I have no idea who these people are, what they might be going through, or where their stories have taken them in the past. I know nothing of the weight that they carry. I don’t know which of them might be going through a divorce, grieving a loved one, battling addiction, or ordering hot dogs with seaweed sticks in their cervix. So, I choose to be gentle. If there is one thing of value that we can share with others, it is the tenderness of our hearts. It is our capacity for kindness without reason or excuse.

Thank you, Clara, for yet another lesson.

Be gentle, my friends.

Postpartum Lessons

When I was in my postpartum period, after my first pregnancy, I would regularly bemoan the usual postpartum symptoms. I could often be heard complaining of night sweats. Whining about having to wear a thick pad all the time – as if delivering the baby was not hard enough, now I had to walk around in a diaper? I bitched about not being able to take any stronger pain medicine than Tylenol, to ease the pain from engorgement. The point is – I complained.

Months later I would turn my complaining to my body – stretchmarks, a sagging tummy, weak hips that no longer supported the distance running that I have spent my life enjoying. I saw these new flaws as damage, the damage done to my body by carrying my son.

This postpartum experience has been similar, in respect to my own body. Engorgement, bleeding, night sweats. In the last week I have begun to notice a new postpartum symptom that I did not experience the first time around – blurred vision. I was this close to going to have my eyes checked and my lenses updated, when I remembered reading something about postpartum vision changes. Some quick online research and sure enough, there it was. Noticeably blurred vision is pretty common amongst postpartum women and is generally transient, lasting only about 3 months, through the time that is commonly referred to as the “4th Trimester”.

This new postpartum symptom unlocked something inside me. A realization of how wrong I was in the way that I viewed things the first time around. The “flaws” in my body, the annoying symptoms that I had to manage in the months following the birth of my son were nothing to complain about. The stretchmarks are art, much like the tattoos that are inked upon my skin – they tell a story. Every single one is a testimony of his growth, his becoming, and the part that my body played in his development and birth. My scarred and sagging tummy is evidence that I grew him well. The engorgement that I experienced in the beginning of our breastfeeding journey was to be celebrated, because it meant that my body was succeeding, if not excelling, at creating the food that would sustain him. The bleeding was my body’s way of preparing my reproductive system for continued good health. It was paving the way for me to bear more children. My body is a machine. A beautiful machine, and one that I did not fully appreciate until now.

This time, the postpartum symptoms have been hard. Truly hard. You see, the most important thing that I have learned about postpartum life and appreciating my postpartum body is that what really mattered all along – my child. My son was, and is still, in my arms. I nursed him. I nurtured him. I have watched him grow into the vibrant little boy that he is today. My body had complaints, but they were nothing, because he is here.  I would take a million stretchmarks and live through engorgement and bleeding that lasted a lifetime, if it meant that Clara could be here, hale and healthy. The way we always hoped that she would be.

Clara is not here, though. She could not be here because her body was disabled in a way that made her incompatible with life outside of my body. My body, the beautifully scarred and sagging machine. This time, the postpartum symptoms are a painful reminder that she was here, and now she is gone. They wane, thankfully, as time gets on, and I know someday they will stop. The scars on my heart will remain, though, much like the ones on my beautiful, sagging tummy. They will remind me of yet another lesson that Clara has taught me – Be kind to yourself. Love yourself. And always remember what really matters in life.

Clara’s Story

Two days after Mother’s Day, 2015, I found out that I was expecting my third child. This number requires a little clarification, because although this was my third child, it was to be my second pregnancy. My oldest son is actually my step-son. Now 12, I have been a part of his life since he was 5 years old. He feels like my son, and so he is. Simple as that. My youngest son, my first pregnancy, is now a vibrant, baseball loving 3 year old. Making this baby my third child.

This pregnancy was no surprise, my husband and I had been trying for another baby, but I did not think that I was pregnant yet. All of the early tests that I had taken had come back negative, even up to a day or so before I expected my period (when accuracy rates jump considerably). Day 1 of my expected period came and went, however, so I took another test and there it was -positive.

I was THRILLED. Giddy, I decided to tell my husband in a fun way, since I think I told him about our first baby via text message. Ha. My husband and I are beer nerds and so I made a fake bottle label in order to announce it to him. I came home, said I’d come across a rare brew and had brought one home for him. Then, I handed him the bottle, labeled:

 Bauer Baby Pale Ale
Brewed in the belly of a 30 year old woman

He laughed. I laughed. We hugged. Everything was just as it should be.

Fast forward several months. I was 20 weeks pregnant and we are heading to our anatomy scan, both of our sons in tow. The oldest was excited, but decidedly awkward about anatomy scanning and reproductive body parts in general, as 12 year old boys will be. The youngest was bouncing all around, barely able to contain his excitement and curiosity. His joy about the news that he, too, would soon be a Big Brother, was palpable. He had spent the last month kissing my belly and declaring mom-puddle inducing things like, “your baby is so cute, Mama!” or “Mama, I just wuv our new baby.” Our youngest had been declaring for weeks that he believed the baby to be a girl, as did pretty much everyone else that we knew, including us. We all just knew.

The ultrasound tech was the same one who had done our early scan, at 6 weeks. The same tech who had first played our baby’s heartbeat for us, who had first confirmed that, indeed, our 3rd child was safely growing inside me. We were the first appointment of the morning and so the gel had not yet been warmed. Apologizing for the cold, he squirted a dollop on my belly and said “Let’s go ahead and just get the gender out of the way, okay?” I think he could sense our tension and excitement and it was, perhaps, a little too early in the morning for so much giddiness for him. We agreed and, faster than I could believe, he placed the instrument on my stomach, tweaked the angle slightly, glanced at the screen and said “Yep, it’s a girl!”

I cried. I laughed. I did both at the same time. I will never forget the look on my husband’s face as he processed the information that he was going to have a daughter. The prospect exhilarated and intimidated us both. We, the parents of stereotypical, rowdy, train and baseball loving boys, would soon have a girl. We, staunch feminists, were about to be responsible for teaching a young woman how to navigate a world where being a woman is often a challenge. Immediately, my mind was consumed with things like where exactly I stood in the great Barbie debate (yes, such a thing exists in my mind), and at what age would it be appropriate to teach her that she should only shave her legs and arm pits if she wanted to and not because she felt the need to conform to society’s, misogynist influenced, standards of beauty and, oh damn, I am SO GLAD that a very femme co-worker taught me to French braid hair last year, because if this little lady is anything like me, she is going to have hair for days. Speaking of hair, I hoped that she would be brunette, like me, because both of my sons have their Father’s blue eyes and platinum blonde hair, despite my brunette hair and hazel eyes being considered more dominant traits. I decided that it would be absolutely charming to have a family where all the boys were blonde and all the girls, brunette. Like a modern day Brady Bunch. Silly thoughts, all of them, and yet I relished every single one.

All of this, and more, raced around my mind throughout the rest of the scan, which went along as expected. The following Tuesday, however, it all changed. I got a call in the afternoon from my beloved OB. This man is the nicest man to ever wear a white coat and I can hardly imagine anyone else caring for me during a pregnancy or delivering my children. His, usually kind, voice was tense and rehearsed. “Hey kiddo, I just got your ultrasound results from over the weekend and… they found something… there’s something they want to take a better look at.” I remained silent, hand clutching my swollen belly, heart caught in my throat. “How do I explain this… you see, the baby’s head is separated into 2 ventricles and, one of them might be larger than it is supposed to be. We need to get you in for a more detailed ultrasound, called a Level II scan. Can we get that scheduled?” Meekly, I agreed. I worked up the nerve to ask a few questions, but could not determine much from his vague answers. It seemed that what we were dealing with was called Ventriculomegaly, and it could be nothing, or it could be the worst thing. I resolved to find comfort in this wide range of possibilities and spent the next 6 days in a sort of trance. I did all the things I was supposed to do, while suppressing a fear in the pit of my stomach. A fear unlike any I had felt in my life.

Our Level II scan was scheduled for the following Monday with a High Risk OB at the hospital where I delivered my youngest son. The same hospital that I was scheduled to deliver my daughter at. Nervously, we went in and met our ultrasound tech, who was very kind and encouraging. She began the scan, showing us the baby the way they usually do. Finding feet and hands, showing us her profile. We watched our daughter move around in my womb, stretching this way and that. I spoke up every time that I felt one of the kicks that we also saw. Feeling them and seeing them at the same time has always been something that I enjoy, a sort of confirmation of the realness of it all. The tech went on to check some specific measurements, as she was supposed to, and suddenly became very quiet. She hastily printed off some photos for us, shoved them into my hand, and left the room, explaining in clipped words that the doctor would be in shortly. Fear bubbling in my gut, I looked at my husband. He squeezed my hand and reassured me that it would be okay.

Moments later the doctor entered. He was kind, soft-spoken and… somewhat awkward. This awkwardness became understandable as things progressed, and ended up endearing him to me in the end. Taking up the ultrasound wand and placing it on my belly, he said with frankness, “This is the baby’s head. Does it look like a lemon?” We thought perhaps that he was going to tell us some joke, or tease us about the funny shape of our baby’s head. Her head was indeed shaped almost exactly like a lemon, and so we agreed that yes, it did look like a lemon. I chuckled nervously, waiting for a punchline that never came. Instead, he was quiet for a moment before saying, “What we are seeing here is what we call Lemon Head/Banana Head.” He then showed us her cerebellum, which should normally have the shape of a barbell. Instead, it was compressed against the back of her skull and very misshapen, having the appearance of a banana. He continued to look at the baby, saying nothing. We held our breath, knowing that something bad was coming, but having no idea yet what we were dealing with, as he had not truly explained. Eventually, he said that he needed to look at the baby’s spine because, these lemon and banana shaped malformations are indicative of Spina Bifida. I was in shock. After some work manipulating the baby to lay in a better position, he was able to see her spine and confirm our worst, and I believe his worst, fears. Our daughter did have Spina Bifida, but in addition to that, she had the worst kind, Spina Bifida Myelomeningocele. Basically this meant that her spine had not completely fused, and in addition to that, her spinal canal was exposed, leaking cerebrospinal fluid, and pulling down on her brain and brain stem. This downward pulling is what causes the banana shaped malformation in the cerebellum, called Arnold Chiari II malformation, and also causes the excess fluid to build and become trapped in her ventricles, called hydrocephalus. Her spinal malformation began somewhere around the belly button, and continued all the way down. It appeared as though her pelvic bone was not even connected to her spine. Immediately, our doctor informed us that he did not believe our daughter would ever walk, or have voluntary use of her bladder and bowels. My husband, choking back tears, immediately said “That’s okay. I will carry her to the ends of the Earth.” I sobbed. He was right, he would. I would. We would. We would carry her anywhere, do anything for her. We were sad of course, but undeterred to learn of her physical disability. I looked to my husband and said, matter of factly, “We’re going to need to find a 1 story house.” “Yeah”, he nodded, “a ranch style, or something.” For a short moment, I felt okay. We were going to deal with this. Being in a wheelchair is not a problem. We would learn to change her catheter. Learn to manage her colostomy bag. We would build accessibility ramps to the moon for her. There was so much that we didn’t understand, and I like to think that our stubborn positivity was endearing to our doctor, but the truth is that it probably tortured him. He wiped the gel off of my stomach, handed me some tissues and said he would meet us in a conference room.

The room was stark and lifeless. We both hated it. Our doctor entered and I noticed immediately that his expression was strained. We continued our relentless positivity as he tried to explain to us exactly what we were dealing with. There was so much to explain, so much we did not understand and we had difficulty taking it all in at that moment. Now, I feel for him. What an awful thing to have to tell people, particularly when those people seem so hopeful and naïve, which we were. What had appeared first as awkwardness in his demeanor became something else as we spoke to him. It became his humanity.

Finally, we let our minds step away from the focus on her physical disability and we started asking questions about the prognosis of her cognitive and neurological function. Those were the questions that changed it all. Our doctor explained that Spina Bifida (SB) can be caused by a genetic mutation (conditions like Down Syndrome, Patau Syndrome, etc. are often linked to cases of SB) or it can be a simple physical anomaly. A fluke, if you will. It is believed that a lack of Folic Acid in the mother’s diet can also be linked to cases of SB, but I have been taking a pre-natal multi vitamin every day for somewhere around 5 years, so this is unlikely the cause in our case. If our baby had one of these chromosomal mutations, it would give us a very clear picture of what her cognitive abilities were likely to be. For this reason, he recommended that we do a particular blood test which would screen for a wide number of chromosomal abnormalities. We agreed and continued to ask additional questions. (Results from that test eventually came back all in the clear, revealing that our particular case of SB is likely chalked up to a rare, purely physical deformity). He explained that, without one of the chromosomal abnormalities, it would be difficult to determine the exact level of neurological damage, until after she was born, but that the cerebellum malformation and hydrocephalus would undoubtedly have an effect on her. He explained that the hydrocephalus would inhibit her brain development. Basically, the more that the fluid continued to build in her head, the less space for her brain to grow. He told us to go home, read about it all, do some soul searching and call him with questions.

We did just that. We also cried. We cried so, so much. We held each other and promised to listen to each other and to be honest about what we were thinking and feeling. My husband was determined that, no matter what happened, we would come out stronger. I took comfort in his positivity, as I felt like the ground had gone out from under me. Without really saying the words though, we both knew what question all this research was trying to answer. Would we proceed, or would we end the pregnancy?

For our entire adult lives, my husband and I have been in agreement about the Choice debate. We are absolutely Pro-Choice. We believe wholeheartedly in a woman’s right to choose and in the protection of and ensured access to safe reproductive healthcare for women and men alike. However, we have also always agreed that we would never terminate a pregnancy. We never dreamed that anything could be so wrong as to drive us to such a decision. How arrogant we were. The implication of this position is that we believed that we could handle something which someone else could not. It implied that it was okay if you couldn’t deal with it, but that we definitely could. Suddenly, our entire belief system was called into question. That we were even considering terminating our pregnancy was painful to us, but we were considering it.

We spent the next 24 hours voraciously reading about Spina Bifida Myelomeningocele, Arnold Chiari II malformation and hydrocephalus. When reading and learning about SB, it is important to compare apples to apples, as there are a wide range of SB cases, some very mild and some very severe. There are a number of stories out there about children who were born with SB and who are living relatively normal lives, thriving even. However, most of those babies (well none actually, that I was able to find), had cases quite like ours. We began to learn about the consequences of her cerebellum malformation. This included things like difficulty swallowing, breathing irregularity, changes in the function of the throat and tongue (read: difficulty eating) and much more. Additionally, her level of hydrocephaly meant that the space in her head which was reserved for her brain to grow into, was restricted. Hydrocephaly due to Spina Bifida Myelomeningocele can be expected to increase as gestation continues, further restricting brain growth and often resulting in an early induction of labor and delivery, so that the baby can receive a shunt to drain the fluid and relieve the pressure in the head. After much reading and research, I made a call to our High Risk OB to ask some more informed questions about our prognosis. He confirmed our worst fears. The extremity of her SB malformation, cerebellum malformation and hydrocephaly meant that she was basically guaranteed to have some form of brain damage and impaired cognitive function. The severity was truly uncertain until after birth, but in his opinion, it would be rather significant, to the point that it threatened her likelihood of survival. I learned that she would be in surgery immediately after birth (once to close the spine and another to place a shunt in her head) and then, depending on her level of brain function, would likely be on some type of support in order to survive. From there the future was uncertain, but the prognosis was stark. We knew then what we had to do. Knowing all that we knew, and then being told that her disability was such that even her survival was uncertain, we determined that we would end the pregnancy. We could not bring her into a short life of pain, and we could not put our children and ourselves through that experience. There was another option, but it was the hardest decision that we have ever made in our lives.

This choice is not one that either of us ever expected to make. Our early arrogance in this matter was a slap in the face. I felt like a foolish child, testing fate only to find its bite every bit as fierce as its bark. The next few days were a torture. I could still feel my daughter moving inside of me. I will never be able to properly describe the anguish of that feeling. Our insurance company has a Catholic directive and so terminating a pregnancy is only approved in cases where the mother’s life is in danger or where the baby is determined to be incompatible with life outside the womb. This meant that getting our surgical abortion scheduled was a nightmare, with many hoops to jump through and obstacles in our way. We originally had an appointment for the following Monday, at a local hospital, but on the Thursday before, our insurance decided that we needed to go somewhere else, to a clinic in Chicago. This was a sort of good news, because we learned that it meant our case had been personally reviewed by the Medical Director of our entire, major U.S. insurance company and that it had been decided that our baby’s diagnosis was to be classified as a Lethal Fetal Anomaly, and thus would be approved and covered by insurance. This was a second opinion, and one confirming what we already believed to be true, that she would not only have had a miserable sort of “life”, but that she was very unlikely to have survived at all. Forcing a woman to carry a child to term, only to deliver it to its death is a special kind of cruelty. Thankfully, it is not one that our insurance company believes in. What’s more, at least for the time being, the choice to not have to suffer this terrible fate is currently protected by our government, despite the recent and ongoing attacks by people who really, truly, do not understand.

In the state of Illinois, late term pregnancy termination is legal up to the point where the fetus is considered viable. This can be anywhere between 22-24 weeks and each clinic or hospital has its own policies and cut-off dates, within this range. 3 days after our diagnosis, a Thursday, I was exactly 22 weeks pregnant, and dangerously close to being outside of the legal limit.

I called this new clinic on that Thursday afternoon to make an appointment and was told that, due to where I was in my term, I needed to start the 3 day procedure on that same day. In 2 hours, to be exact. I made the appointment. Since the initial diagnosis, I had been in a sort of business-like state. My husband, since we made the decision to end our pregnancy, was already grieving. He was distraught, and in shock. He could not feel her move, though. To him, it was almost as though she was already gone. I on the other hand, still feeling my daughter move inside me, could not grieve her yet. I willed myself into a sort of numbness to cope with what I knew was coming. I was solely focused on getting everything done and unraveling the knots of red tape that our insurance company was attempting to wind around us. In hindsight, I realize that I was in shock.

I scheduled the first appointment of my 3 day procedure and, panicked, called my husband to frantically explain. He swiftly arranged childcare for both of our children and flew from his office (yes he was at work, yes that is crazy, yes he was in shock), to pick me up and drive me into the city.

2 hours after making the initial phone call, we arrived. The clinic was in an office building on the North side of Chicago. It was much like a doctor’s office, except that it seemed a thin blanket of melancholy shrouded every surface. The staff, though, was incredible. I have said repeatedly in the days after how grateful I am to have been surrounded by such kindness at the clinic. One nurse, in particular, was with me on all 3 days of my procedure. She talked to me about my glittery nail polish on the first day, distracting me from the pain of having laminaria inserted into my cervix, to cause dilation. On the second day, when my cervix had not quite dilated to where they wanted it to, she wiped the tears from my eyes as I cried out in pain from the manual dilation that they had to perform, in order to insert still a greater number of laminaria into my cervix. On the third, and final day, she placed my IV and then moved on to sweetly touching my cheek, as the anesthesiologist spoke softly to me before putting me under. I vaguely remember telling them all that they were angels. I am certain that they are kind to everyone who enters the clinic, but it was in my chart that we were sadly ending a wanted pregnancy, losing a very much wanted baby, and every single member of staff that I made contact with at the clinic expressed their sympathy for our situation. They showed such kindness and compassion throughout the process. I will never forget them.

That Saturday, as we left the clinic for the final time, there were protesters. Amazingly, we witnessed even further kindness in the form of “clinic escorts”. Volunteers, wearing pink vests, whose sole purpose is to keep the protesters a reasonable distance away from the clinic, and provide an encouraging arm and face for people coming and going. These men and women are heroes in pink vests instead of capes. What they do is brave, selfless and so appreciated.

The day after the procedure I began to have trouble breathing. My husband took me to the ER, and after CT scans and EKGs it was determined that I was just sort of freaking out. Obviously not a medical term, yet no less accurate. The kind ER doctor on duty patted my leg and said “You have been through a lot. I’m going to write you a prescription for Xanax. I want you to take it, and try to rest.” I was still in my emotionally numb state, at that time, but it had begun to wear off. I think my difficulty breathing was a physical manifestation of my emotions flooding back into my body. They pressed upon me like a mountain, settling their vastness directly on my chest.

Today, it has been 18 days since my daughter, Clara, left my body. We had been uncertain about naming her because choosing to give her a name felt like we were acknowledging that we did, in fact, lose a child. We were afraid of making that acknowledgement. However, as time got on, I realized that without meaning to, I had named her. I had been referring to her in my mind as Clara, and I very much felt like I lost a child, rather than a pregnancy. Naming her was cathartic. It gave me someone to say goodbye to.

In the week following our procedure, we spent a few days transforming the empty room that was to be Clara’s nursery into a family library. The empty room at the end of our hallway had been salt in a wound. Creating the library gave that room a new identity and a new life. A few days after we decided to name her, I was sitting in the library’s new green armchair, with sun streaming in through the open window, and started to read a new book. On the 10th page I was introduced to the love interest of the main character, named – Clara. I do not believe in coincidences, and even if I did, this was too much to be one. I cried my eyes out. It felt as though she was saying hello. It felt like she was telling me that we made the right choice to name her, that she was okay, that she loves us, and that she understood. It also felt like she was saying goodbye, and telling me that it was okay to do the same.

That day was one of the hardest in my grieving so far, but the days since have felt, ever so slightly, brighter. I am far from okay, still deep in my grief, as well as battling a resurgence of anxiety that had previously been under control, but I have begun to feel the courage to let go. I will never forget her, and I will always honor her as my first daughter, my third child, my beloved Clara. However, my sons need me, and I need to let go just enough to be here for them. I think she understands, and I know that she feels my love. A love that she will hold claim to for all the rest of my days. Until such a time that we meet again, and I have the exquisite pleasure to hold her in my arms for the first time, and then keep her there, forever.