Inkling Post

The Spirit is Resilient

I’m beginning to really settle into a space of awareness for recognizing how truly resilient the human spirit is. Death made his way into my home and permeated my womb. I can’t shake that feeling of dis-ease off like I would a bad fall, nor can I see it as just a rough phase I’m going through. When Death dances in delight because his purpose and role in life was fulfilled, but mine was taken from me—I can’t see that as temporary. Instead, I see it as a game changer.

I find myself interacting with people or sitting in job interviews and thinking, I used to be able to tolerate this, but I no longer can. I used to care, but no longer want to. I feel as though Death touched me so intimately that I’m entangled and entrusted to this partnership with him that becomes a silent battle in many instances. It’s not a battle between me and him so much as it is within me. I don’t struggle with knowing he’s here and moved in. I struggle with knowing his role could once again be fulfilled, leaving my role more parched and craving sustenance even more so—that I’d have to endure his celebration far longer than I’d like to. Death does not serve as much of a conclusion for me. Pregnancy hormones linger, and biological emotions and hormones have expectations of a living baby. Until the role of pregnancy is fulfilled properly, I don’t know if I’ll ever really not feel pregnant.

The battle I struggle with is wondering if I could survive such a loss again. I struggle with doubting my resilience.

But what I’m beginning to see is that the human spirit is more resilient than I give it credit for. And I constantly have to remind myself of that. Whenever I think I’ve reached a limit of what I think I can endure, though I might at times be less of a functioning person in that state, I still endure. It just happens. Death hasn’t taken my spirit with my baby.

I find myself going into the anticipation and anxiety involved in the process of potential pregnancy filled with panic and then have moments of peace when I remember, come what may, we will be resilient regardless of our outcome. If Death continues to hover over us, I don’t know how we will survive, but I know we will. And I guess it’s in that space of deep darkness that I begin to really see the first bit of light…a glimmer of hope.

And that’s why I see myself in this partnership of a sort rather than in a battle with Death because ultimately I have no control over the “come what may,” and I just have to accept that and find peace in this space. There’s a fine line of balance in not falling into the expectation that bad things will come our way, but instead being able to accept it if they do. That’s the struggle—the mind game of awareness.

So, I trek forward and make my way through the miry mess with this new perspective, and just wait to see how life unfolds. I wait to see who’s role will be fulfilled—ours as parents to a living child or Death’s. 

The Challenges…

People have no idea how weighted their words can be, and the challenges often hang on the end of simple sentences. Going through the motions of life and talking myself into getting out of bed each day with intention, motivation, and focus is a challenge in itself, all in the vein of finding meaning or attributing honor to my life for my daughter’s lost life. And if that isn’t challenge enough, the sentences thrown my direction present their own layers of hurdles that crush my heart ever so slightly or ever so weighty depending on the day.

My grandma has a blanket with a family tree on it where all of our family names are added by embroidery to the branches and leaves of this tree. The amount of names has grown over the years with the addition of spouses and children, and it was time to add Madeleine’s name. My grandma and I drove it to the embroidery shop, where the shopkeeper has become accustomed to the purpose of my grandma’s visits. 

“You have another name for me to add?” she said.

“We do,” my grandma replied somberly.

“Well, there may not be much room, but the good news is people are still having babies, right!?” she said cheerfully and full of laughter.

It was a sentence that maybe if my baby was living I’d have laughed along out of politeness, but instead it stung so greatly that day. Without telling her who the name belonged to, I just spelled out the letters audibly and watched her spell it incorrectly. And then I told her she did it wrong and spelled out the letters again, M-A-D-E-L-E-I-N-E. I told her the thread color to use and where to place the name on the blanket near Tommy’s and my name, and we left saying we’d be back later to pick it up.

There’s nothing she did wrong, but she still made me want to cry.

Last week I went to a job interview. If trying to maintain a smile and high energy, while trying to sell myself and represent the “potential” version of me for a total of 3 hours that I was in the office, wasn’t challenge enough, anticipating loaded questions wasn’t really on my radar.

“Do you have kids?” I was asked.

So many things ran through my mind in the half second I was allotted to answer. If I didn’t answer quickly enough, the next question could be, why did you have to think about that, either you do or you don’t…it’s not a trick question. It was that moment people have talked about in the baby loss community…the moment when you have to deny your child’s existence not because you don’t want to share but because others are not privileged enough to know the information.

“No,” I said.

“Do you plan to have any?”

Another weighty question, just seconds after the first! He had no idea what he was asking me, and in order to not break down and cry right then in that room, I had to just pretend none of what happened to me existed. For a moment, I removed myself from myself because if I were to comprehend it, I would fall apart. 

“Do you plan to have any soon, is really what I want to know?”

How was I supposed to answer that? I hope so, is what I wanted to say. You shouldn’t be asking me that as a reason not to hire me, is what I wanted to say. 

“Is it a problem for me to have kids?” I said in response after scrapping words.

I made it through the interview, and the tears waited to surface once I reached my car. He didn’t know what he was really asking me. He didn’t know he was asking me to deny my baby’s existence. He didn’t know he was asking me a hypersensitive question, where my hope and motivation lies in the idea of getting pregnant again. He didn’t know his words would surface fresh pains. But they did.

And those are the challenges we now face. There’s a new layer of awareness of trying to be prepared for these types of comments and questions, but ultimately, we can never be prepared for them. Our responses vary. And they aren’t the types of comments that are overtly insensitive, or where we feel a need to educate a person on what happened to us…they’re just the silent, internal challenges we have to face.

It’s a new transition. It’s a new thing to practice. It’s a new way of life. We are in a space of really seeing how different life is now the more we engage in life’s happenings and with people. Coming out of isolation and hibernation really feels like we are entering a place that looks so different. It’s like driving past your childhood home and realizing it’s not as big and grand as it once seemed. And yet, the small bits of art and treasures you found through imagination that made life interesting and full before, still are the things that stand out. But the bullshit and the white noise that throw us off these days…it’s not that they throw us off because we care that much about them, so much as they are reminders of how isolated we really are even when we engage. But the specks of beauty amidst that reality is that though it feels like we don’t really fit in anywhere or have many who can relate to us, that means we can fit in anywhere… because that’s the one constant—our basic rules don’t change, and the limitations exist wherever we go, so it’s predictable in many ways. It’s all about the challenge of an internal mindset. And there is some comfort in that in its own way. 

Routine is Ambiguous After Death

I wouldn’t say we had a specific routine to our lives before losing our daughter, but I would say we had elements of a routine. Gardening. Croquet. Evening walks by the beach. Scrabble games. Work. Alternating hiding the Japanese lucky cat figurine for one another to find in obscure places around the house that make each other laugh. Creating art. None of which happened on a daily basis necessarily, but they were part of our basic living routine in their own ways. All of which halted on January 19th, and routine has become ambiguous.

Each day is different, and each week is different. Routine now includes reading baby loss blogs (or BLB’s as Tommy has come to call them), going to the grocery store is an outing rather than a task, and finding ways to keep her presence around the house because she’s always on our minds is prevalent. The week we lost Madeleine is the week Tommy was supposed to deliver his album to his label, and now our routine consists of trying to incorporate old routines with the new. Our transition routine, or adapted routine more so, is one of Tommy spending late night hours trying to finish something he started in a completely different mind space. Passion is accompanied or overshadowed by burden and angst in a lot of ways now that the IV of shock that we’ve been experiencing is wearing off and the haze is lifting and the weight we knew would come is beginning to reveal itself as this reality sets in. We don’t have routine right now, and I keep waiting for the day when we can breath together and not feel like the oxygen is so thick. 

So, in an effort of incorporating old routines with the new to alleviate some of the stress, we’ve started some of our basic living ways from our lives before January 19th. A scrabble game slowly ensues. The Japanese cat has made its way into cabinetry and clothing pockets once again. The garden is beginning to grow with promise. And we walked to a restaurant yesterday, getting us out of the house and eating a meal for enjoyment’s sake rather than for mere nutrition—a first in what seems like a long while for us. And I finally mustered up the energy and motivation to finally start finishing an art project I started a year ago. But even that, like Tommy finishing his album, is a new mind space and I have to approach it differently. Nothing is the same, not even our process of creating art…we go through the same motions, but it’s different in a lot of ways too now. I never would have expected that in this process of loss and grief. I thought our arts would be the one consistency, and in many ways they are because they still exist as outlets for us to process life, but in many ways even those are different now too—we have to talk ourselves into completing past projects—at least for this moment in time.

It’s been almost 8 weeks since she’s been gone, which means I would have been 29 weeks pregnant right now…it’s a counting game I can’t get out of my head. We plow forward combining old routines with new, and filtering through the process of grief simultaneously. Tommy will be performing at SXSW this weekend as Abandoned Pools, and I will be looking for work soon because previous plans in life call for us to show up regardless of this huge halt in our lives on January 19th.

So, we plow forward in this space, combining old ways with new ways, and each day has its own ever changing routine. And I’m hoping the extension of daylight now will help with developing new routines.

Accepting the Terms of Death

Sometimes it feels like I’m falling and holding my breath as I wait to hit the ground—I’m not sure if I’ll hit the ground and scatter into more pieces or not, but I keep wondering if it’s going to happen. And the only reaction I have left in me is to just hold my breath. It isn’t all the time that I feel this way, but it’s a terrible feeling when it takes over.

What I’ve realized in this experience is that the layers of grief are deep, and shock sort of acts as a buffering agent for the intensity of time, and that buffer delays a lot of fears. And in that state there is still much discomfort with each layer that is uncovered and learned, and the only way to find peace in that darkness is to accept the terms of death.

Up until last week I was having nightmares every time I’d close my eyes and fall to sleep. Even Ambien and Xanax couldn’t shield me in my groggy state. I couldn’t nap or sleep at night without reliving doctors appointments or imagining the unimaginable. I’d dream sometimes that Madeleine lived but then was two years old and died another way: by drowning, getting hit by a train, or worse. Sometimes in my dreams I would die with her or I would die instead of her. People say it’s normal to have with post traumatic stress, and I suppose that’s a true element, but I think there is a huge element of me fighting the stages of grief that surfaces during sleep.

Grief doesn’t come in this nice, pretty package, with rules and a formula to follow. There aren’t answers from those who’ve grieved before us because what works for one most likely won’t work for another. So, what I’ve recognized in this process is that I have to just accept the terms of death and sit with it. As soon as I can stop fighting life, and I stop struggling with the discomfort involved with death and all its terms, then I find myself a step closer to having peace within this space. 

One of my main struggles has been the thought of how undignified and unnatural my daughter’s exit from this world was. How much pain she was probably in before we even realized. I wondered when she started to decline, and Tommy reminded me that she was probably never thriving. I tried so hard to give her an optimal living environment, and even though they said it’s nothing I did or didn’t do, that this was just a fluke thing that happened in cell development, it still makes me really sad that I couldn’t fix it. And those are all terms of death I’m having to accept.

I consumed 80 grams of protein a day for optimal brain development despite my lack of desire to eat meat. I took all my omega vitamins, and the best prenatal vitamins I could find. I detoxed for 2 months before getting pregnant to make sure my body got rid of all toxins and was in optimal shape to grow a life. I maintained low sugar, did prenatal yoga, and cleared my life of extra emotional stressors that I thought would negatively influence my child. And I loved on her with all I had in preparation for her birth, and I tried to offer her emotional stability that would form her for the rest of her life. I was trying to teach her in my womb how to enter life and turn into a stable adult. And I had no idea that was the only time I would ever get with her.

It makes me both sad and grateful. Sad because I wish I could keep teaching her, hug her, and love on her as I watch her grow. Sad because kid 1 got (what I thought was) my optimal energy, and kid 2 will get a grief-infused energy. My best hope for kid two is that shock will still play a factor in buffering time and delaying fears as I fight with all my might to offer a similar stability next time around. And I can hope that the love I have now is even deeper than before, so even though my next pregnancy will inevitably be one of anxiety, fear and grief, it will also have an intense, deep love that balances out the other emotions and that would have never been experienced under other circumstances. What I teach my next baby in the womb will be different, but hopefully a built upon experience with a wide array of deep emotions from what I previously could offer—and maybe it won’t be such a bad thing. I’m grateful for the time I had with Maddy, and I’m grateful that I loved being pregnant so much that I don’t have to walk around with regret of wishing the pregnancy was over. It’s difficult now to hear other women complain about their pregnancies because in my mind I’m thinking your baby could die, enjoy this time you have. But then I remember they still have the ability to hope easily, and for me now that is a conscious effort and a lot of work to strive toward. The ability to hope easily and freely was taken from me when my baby died—and I don’t think that ever comes back. It’s all just another aspect of accepting these terms of death.

Social endeavors are now more challenging and draining too. Every time I talk with someone I’m having to practice not being sensitive to possible insensitivity. I’m learning a new way of interaction, and trying to figure out how to live my life in a new way since our daughter didn’t get to live hers. More terms of death I just have to learn to accept because once I accept these foreign terms, I strangely feel a better understanding of death and I move forward with it. I learn to be okay in death’s presence. It lays beside me in bed while I try to sleep, but once I let go and give into each layer and accept that it isn’t going away, then the nightmares stop too. And somehow I’m able to find a little peace and rest despite the circumstances. 

So, this week in attempt to develop some sort of normalcy and eliminate an element of death that I’m capable of removing, I started pulling the weeds and dead plants out of my garden, and I’m starting a new garden with new shades of green and mauve. A garden that mostly consists of succulents because they won’t die easily since I can’t handle more death at this point in my grief. I had originally planted everything last year with the intention of creating this beautiful yard space for our baby to enjoy, and in the process of trauma, I let everything die. Planting new greenery seems like an element of hope…I can work on cultivating a new plot for our next baby. And I think Madeleine would be happy to see it too. With starting a new garden, I feel a little bit like I can hold my breath less. When I stop trying to climb out of this hole of darkness then I live better, easier. So I find myself strangely giving in to these new terms of life. We are learning to just sit in death’s company.

Over A Month Without Our Baby Girl

I can’t believe last Sunday, the 19th, was the month marker of when we lost our baby girl. Time is such a blur these days. 

In anticipating that it might be a rough day, we decided to spend the afternoon at my grandma’s for a small family gathering celebrating my uncle’s 70th birthday. It was strange to be there, but good at the same time. It was strange to be around people and come out of hibernation for a day, it was strange to know half the room had seen death early in life, and it was strange to know my grandma understands our loss on a deep level. Nothing really had to be said because there is nothing much to say. We were received at the door with hugs and a couple of glasses full of wine that were handed to us with the few words, “I think you need this.” And that said enough.

I have 3 uncles, one of whom I’ve never met—the third son. When he was 18 months old, he crawled behind a neighbor’s car as the man was backing out of his driveway, and it took my uncle’s life and changed both families forever. “I can still remember him walking through our front door, holding Tommy in his arms, explaining what had just happened,” my oldest uncle said of his 6 year old memory—an image that will never be erased by time from anyone’s mind. The story is one of the most tragic I’ve heard. My grandparents always recognized it as an accident and remained neighbors with the family. But the trauma of the tragedy carried with the driver, a father of 3 boys himself, and he later committed suicide because he couldn’t carry the weight of the event anymore. My grandparents lost a son, the neighbors lost a dad, and the kids experienced death in their young years. It’s one of the saddest things that imagining the pain involved is not really feasible.

I sat in my chair drinking my wine, and I couldn’t help staring at baby Tommy’s picture on the wall. And on a table just next to my chair was an 8x10 baby photo of me, and I couldn’t help but think that’s what our daughter would have looked like. And my eyes would go back and forth between the two photos of these smiling, innocent faces, thinking of the lives that were short lived. My eyes welled up with tears with the thoughts of what they missed, and what we miss without them growing old with us. While we sang Happy Birthday to my uncle, I thought about how different life around the table could have been if these two lives were still around. I wondered what the room was missing without their presence. I wondered what their laughs would be like. If they were serious or the joking type. I imagined a combination of the two. And I imagined them in the room with us, sharing a chair, enjoying the conversations even though they can’t engage with us. I imagined them developing their own special bond, their own jokes, and I imagined them discussing a new art form that is only seen in the afterlife.

“I couldn’t help but think when I heard about your little girl that maybe my Tommy Reese was meeting your Madeleine Reese in heaven,” my grandma said to me. When we picked the middle name, we didn’t know that her Tommy shared the family name, but there was something really comforting about that shared name. Maybe something symbolic, I’m not sure. I don’t know what happens in the afterlife—if we meet our family members—but I’d like to imagine that when her soul was released from her body, she was met by an old soul, who shared her same earthly blood line and shared her name. I’d like to think that his soul welcomed hers with love and an understanding of a short life. If I imagine that, it gives me a little more peace in this process of grief. It’s nice to think someone can coach her through the next life, as we continue to carry her with us in this life. It makes going into this second month of grief a little bit lighter. So if that’s an image that helps me get through, then I’m going to hold onto it for the moment—because really, it’s all about coping right now. And sometimes it’s the small things that help us cope.

Oppression and Anger in Grief

It’s interesting how the body and mind remember things…I’ve mentioned how my body is physically healing, but still remembering the pain and causes discomfort. Well, two nights ago I started having really bad anxiety, despite having taken anxiety pills, and then last night it built up and transformed into this completely (what I thought was out of the blue) emotional overload of feeling absolutely and completely livid. I was shaking, could hardly drive, and I wanted to run people over with my grocery cart at Whole Foods on Valentine’s day. But why would I ruin people’s love holiday with my rage? I walked around with tears in my eyes, thinking I’d have a complete melt down as soon as Tommy arrived to meet me, and then people would probably think my husband was breaking up with me on a love holiday. But, I surprisingly kept it together.

What I realized was that this reaction was not from nowhere, it was my body/mind remembering something specific. Time has been completely lost on me since mid January…I wouldn’t have even known it was Valentine’s day if I hadn’t been on Facebook. And that’s when I realized it’s been just over a month since our first horrific doctor’s appointment where we learned our daughter was dying. And a month to the day when my anxiety started was the day I received the worst email of our lives, during the worst week of our lives.

I want to preface right now, that the reason I’m writing this post is not to engage or participate in or make a political or religious statement. However, I feel like the weight of grief is so heavy on it’s own, and because someone else selfishly wanted to lift a load off her shoulder’s by trying to make a political and religious statement to us, she’s dumped more on our plates than we can handle, so in order for us to move forward with our grief, and not stay in a stagnant place of anger, we feel we need to put this information out there to help family and friends understand why we haven’t felt like seeing or talking with them. Essentially, we need to unload in the same way this person did. This is also for other parents who have suffered the same hurtful oppression of this sort and have felt alone in this space like we have. This is not an invitation for debate or unkind responses in our fragile state. 

About a month ago, we met with our doctor who explained the severity of our baby girl’s medical condition and that ultimately she was going to die, and it could be any day. The dream of having her ever kick me was taken away when it was explained to us that she was restricted both on a physical level because of her chromosome issues that don’t allow her to move her ligaments, but also on a physical level with me. Triploidy wasn’t the only issue we were dealing with in this pregnancy causing harm and suffering to our daughter. It was by far the most devastating day we’ve lived through.

We were given several options, of which I won’t go into too much detail. We were told we could carry out the pregnancy and we’d have support, but I knew I’d have to go through every minute of every day wondering and tormenting over whether or not she’d died yet, and there would be no way for me to know because she couldn’t kick me and then stop as a visible sign. But with that decision, I would also know she is suffering and would feel my suffering too, and the option to carry the pregnancy would pose more risks for my own health as well due to various factors that I also won’t go into. We were also given the option to induce labor and visit with our daughter, but that labor at my stage of progress could last up to 3 days, would be in the maternity ward where I would have to hear other mothers giving birth to living babies, and we were told many nurses wouldn’t tend to us because in the medical world it is still considered an abortion (which for the record, I believe should be renamed). The third option was to be put to sleep for the medical procedure, and there are lots of details there I won’t go into either, but ultimately after asking every question we could think of and weighing all of our options that is the route we decided to take.

I think we had this romantic idea of getting to see our daughter, hold her…study her. We thought we wanted pictures. I thought I can’t go to sleep and wake up and just be empty… I thought I needed to see her for closure, to know it was all real. But once we did more research, realized she was only 1 lb, that I would be in labor with other women with healthy babies, that nurses wouldn’t help us, and we assessed our daughter’s suffering along with our own, and contemplated what is the best decision as a family and for our daughter and what is best for a future pregnancy and future baby, we opted to have me put to sleep, knowing very well all the details in which that entails.

The way we saw it was that my body was basically serving as life support for our little girl, and we were faced with the most difficult decision of our lives not only dealing with the shock of the news, but then faced with having to decide if we could take her off life support and in which ways to do it if we did. It was absolutely the most agonizing decision, not to mention that grief starts the moment all that hits, because any decision we made, regardless of what we chose, was a hopeless end in death. And that’s where we were. We were suddenly in a place waiting for death.

There was so much lost in that week, and yet, we still tried to give her as peaceful an exit as possible, and we grieved in ways of taking her to places we knew we’d never get to take her just because we knew she was still alive and with us and we didn’t want her to feel our agony in the process, so we tried to interlace our sadness with moments of joy, laughter, and peace as much as we were able to. I thought, if she were two years old, or any age, on life support, I’d try to make her last days as fun as possible regardless of the circumstances, so that’s what we did, and it was healing and helpful in our own state of grief. We don’t regret any decisions we’ve made in this process. 

When we were in the beginning state though, we couldn’t even talk. We hardly knew what to say, and we were crying too hard to say it. We let our parents know in minimal amounts of words that we would be losing our daughter, and we were too devastated to talk to anyone else, so we let them tell the rest of our siblings and family. 

Two days after we went through this whole ordeal, after we’d learned the condition of both my body and our daughter’s body, we received the most cruel email anyone could receive in a time like this, but I’ll go as far as saying that anyone could ever receive. Cruel isn’t even a strong enough word for how we feel about it.

One of my parents’ friends took the liberty on herself and had the audacity to impose her opinion, to lift a weight off her own conscience to tell us what we were doing was wrong. It was not done out of love, concern or gentleness for us. I know she didn’t have all the facts because we didn’t even tell our parents all the facts. To this day, no one knows all of the risks involved and all of the problems we learned on that horrible day. So the fact that she felt the need to say anything at all, when she probably knew we weren’t even talking to our own family members, really is almost paralyzingly stunning to us.

She told us doctor’s can be wrong, that we should still hold out for hope. She compared what we were facing to an abortion of convenience. She tried to scare us by telling us that we may not be able to get pregnant after this. She didn’t want us to be part of a “culture of death.” She continued to say, “Let God bring her back when he chooses,” as if God is the cause of our daughter not living. Because, the thing is, I think that’s a stupid thing to say to someone, and I don’t think any of us parents who lose children are supposed to be sitting around in a circle in a support group having this in common. I don’t think God kills babies and has a role in this darkness and pain. Why the hell would I want to believe in a God like that? I just don’t share her beliefs. And it’s offensive to me that she would think that I flippantly would make a decision to end my pregnancy. She must think I’m an idiot. I’m the type of person who researches for hours what brands of milk to buy, and then when I get into the store, I still stand there for at least 10 minutes contemplating what to purchase. To assume I don’t understand what is at stake, that I haven’t considered the gravity of everything involved, to imply that she knows better, and to suggest that I am so unaware of myself in knowing what is less damaging to my own spirit, my daughter’s well being, and what will affect both Tommy and me as parents for our next child, is beyond offensive and angering. 

When we were making this decision, we chose to see Madeleine’s soul in perfect form, and unfortunately her body was not. And we constantly asked ourselves what the adult version of Maddy would advise us to do. I meditated. I felt her soul with me. And what we both kept hearing her say was why… with your history of trauma and depression in your life already, why would you make us both suffer with the anticipation of this death, which will make you less of a mother, and damage you more for my sibling?

But what people don’t take into consideration when they assert their opinions is the other person’s vulnerability, baggage, and past experiences that could make average suffering much more intense and completely debilitating. They have no concern for that because they really just want to hear themselves talk. She told me if she didn’t send me this email that she would be doing an injustice…whatever the hell that is supposed to mean. She ended with, “In your heart of hearts, you will eventually KNOW that mothers protect their children. Mothers do not give permission to others to kill their children.” For the record, I believe I was a great mother to my daughter, and I won’t let someone imply otherwise. I believe we protected her in ways that required more strength from us than I even thought we were capable of giving. And then in all caps, she ended her email, “NEVER DO EVIL SO THAT GOOD MAY COME,” but really, I could turn the words around on her because we think the email she sent us was the most evil act someone could do in our most vulnerable, saddest, darkest, agonizing time. We thought about ordering her a magnet for her fridge that said, “Jesus would slap the shit out of you,” but decided not to. It really wasn’t worth the energy. She wasn’t worth our energy. We can’t believe in a divine and associate ourselves with someone who would applaud these acts of cruelty. 

She was trying to scare us from a darkness that we were already in. She reflected her own fear of darkness onto us, and did it in the name of Christianity, like it was a service to us. Thank you, you were so helpful. She tried to steal our last week with our baby girl while she was still with us because of her legalism and politically extreme agenda, which is part of why we decided to spend our time doing fun things. We had to balance out what had just happened for our daughter and for us. We set the anger aside, let my parents deal with it, and we allowed them to carry the anger for us, so that Madeleine wouldn’t feel it. But funny, how exactly a month later to the day that her email arrived, my anxiety grew into the same livid response I had just a month ago.

The thing is, we aren’t afraid of the darkness. We’ve been here before, under different circumstances, but darkness in general, pain in general is no stranger to us and walking through it on more intimate terms now is far more painful than any past visits, and it’s a time we know we have to embrace fully if we ever want to come out on the other side as functional beings with something to offer the world and our children.

So let us be sad. Don’t try to cheer us up by changing the subject to happy things or ignoring that this ever happened to us. Just be sad with us, or allow us to be sad in your presence, knowing that it’s incredibly difficult for us even more so now to even walk outside our house and open ourselves up to people. And if you let us be sad and in this space of darkness, you’ll see us laugh, you’ll see us smile. Just don’t force it out of us, or it won’t happen at all, and we will feel drained, and we won’t get through this grief properly and shape it in ways we need it to be for us. When people like this woman send emails like that, or make comments along those lines, they just oppress us in our state of grief, and that’s even worse than this grief itself because it adds anger and all sorts of other shit to sort through that weighs us down in a way that if we don’t say something right now, then it will bury us completely and we won’t get up to be the better people and parents we need to be for each other and for our future children.

Unfortunately, what has happened as a result of this woman’s email is she has scared us from being able to talk with anyone honestly about the agony we’ve actually experienced on the deepest of levels. She has scared us away from my family. Because she is their friend, so we automatically question if they have the same thoughts and beliefs and just aren’t saying them to us. It’s probably not the case…but we never expected an email like that at all, so how do we not question other thoughts now? She instilled a different fear in us than she even intended. So in order to avoid judgment, we also are avoiding support and connectedness with people who desperately care for us and want to be here for us, but we are too scared to let them in this space with us.

And the crazy thing about all this that strikes us after being through it all, is that because our situation makes some people in our country, like her, so uncomfortable, there are laws preventing medical help. If we’d lived in a different state it would be considered illegal, and we would have had to fly to another state or even left the country because people like her have their opinions turned into laws, and we would be left to deal with the most heartbreaking moment of our lives…treated as if we didn’t want our daughter by people who most likely have never been in this situation, or I would think they might have more compassion and see it through new lenses. I think a majority of people in the world believe in the statement that you can’t just learn from books, you have to experience life too. Well, I guess that’s how we feel about things like this. You can read from an outside perspective all you want about situations like this and form opinions based on religion or lack of religion—believe me, I was raised in an environment in a town where many people think the way she does, and I was raised to think the same things—but until you’ve walked these roads, you really don’t have much to offer for guidance or judgment. That’s my only political statement. I won’t bring this up in future blog posts. Again, we really just needed to be honest about what’s going on in order for us to move into the next layer of grief and try to free ourselves from the oppression people have put on us, and we continue to confront the layers that are already constantly present. 

Sorry this is so long. Thanks for taking the time to read it if you made it this far. 

Again, please consider our vulnerable state and heartbrokenness by not stating anything negative, judgmental or unkind. We aren’t wanting to engage in and debate political or religious views. We aren’t saying the way we handled this is how other people should. We would never say do what we did, as if it’s an absolute truth or right way. We did what we needed to do for us that was the best decision we thought for our daughter and family. I encourage other families to do the same, whatever form that is. We would never judge someone for carrying their baby until it died inside her if that’s what she needed for closure and from the pregnancy and the connection with her baby. We all handle situations differently, and we all have different past experiences that factor into our decisions.

We only ask for grace and gentleness and offer support to others who may have felt the same oppression we have in their grief. Someone, in her extreme legalistic beliefs, who has never been in our position, absolutely made the worst week of our lives even worse, which we didn’t even know was possible. But now we are choosing to see it as an avenue for our anger, and trying to just move past it—moving forward without it following us as an extra shadow in an already dark place. We can forgive at some point, but we won’t ever have someone like that around us again. It is only hurtful and damaging to our spirits.

Grief is Exhausting

Shock makes everything a little more manageable. I feel like I’m hooked up to an IV of pain, rather than morphine, and it’s slowly dripping into my veins and spreading throughout my body. And I find myself grateful for its slow infusion instead of a steady flow.

The strangest notions run through my mind and are playing tricks on me right now. Sometimes it feels like this couldn’t have happened, that I’m still pregnant because I’m supposed to still be…my mind hasn’t quite adjusted even though my body went through all the postpartum symptoms. I kept thinking in the beginning that as soon as I felt better physically that I could go shopping for her, get her some clothes—and then I remember she’s gone. Sometimes it just feels like a set back, that I had surgery to mend the errors, to rearrange Madeleine’s chromosomes, and I still expect a baby in June. Other times I think this couldn’t have happened, maybe I was never pregnant at all. How could I be back to my pre-pregnancy weight? I know it’s not true, but there’s this weird mind game and hormones that factor into it all when you are still in shock, living in a surreal life that doesn’t feel like my own, nor do I want to claim it. But it’s all true, and my daughter is gone.

Mostly what I feel this week is an intense feeling of loneliness that no one can comfort me through, not even my husband, this emptiness in my womb, the loss of my daughter’s companionship. It’s the loneliest feeling I’ve ever felt. It’s so deep to my core. And it feels more real than it ever has before. My body is healing, my physical pain is easing, yet psychologically, my body is remembering the pain and causes discomfort still. I am in this recovery mode of trying to figure out what exactly I need to recover from in order to release my body from being captive to my mind. I’ve been trying to figure out what I just went through to explain it to my body, to talk my way through it and know how to nurture myself in the same ways I tried to nurture Madeleine in her last days, explaining about her illness, and telling her how much we loved her. People say be gentle with yourself, and I now am finding that the word “gentleness” is taking on a whole new meaning. I feel like Madeleine would say to me, transfer the energy you spent nurturing me into energy of nurturing yourself, so I can have a sibling.

It feels like I’ve been raped and my baby was stolen from me. I know that is an extreme statement, but that is how traumatizing the whole experience is physiologically, emotionally, and mentally. My body doesn’t know the difference, but my mind does, so I find I have to coach myself in new ways in order to let this loss fully sink in. Because we didn’t just lose our daughter in this. We lost the joy we had built up over months waiting with anticipation to meet her and that joy was turned into agony in just seconds. In that instant we thought we had a healthy baby, saw our futures together, planned our holidays, etc., and then were told she was dying and devastation set in and life stopped for us while others continue. We were told there is hope for a healthy future pregnancy, but the experience of having it fear-free was taken from us in that single moment of time. There are multiple layers of loss that continue to reveal themselves as the IV continues to drip into us. And that loss becomes part of our constant state of grief.

At first, I wondered if I was just numb from the shock of it all. I couldn’t understand everything I was feeling. But what I’m realizing now is that I’m in a state of experiencing all emotions on the deepest of levels all at once. It’s what some would call “having an awakening” experience. Something that only comes with such tragedy, and is only understood by others who have experienced the same level of pain from a loss of this sort, regardless of their stories and how they find themselves in this position.

I believe when we are hit with traumatic events, we can either let them swallow us up and destroy us, or we can make a conscious effort to let it open us up to new levels of insight and growth as we try to become better people amidst it all. And if you choose to not have it ruin you, then it’s a lot of work, it’s really heavy, and it’s really fucking hard. And I don’t say that lightly. But I do believe it’s possible. If I’m completely honest, I thought we’d be the type who let it swallow us up, but it turns out we can’t be for our daughter’s sake. We have to figure out how to live again because she didn’t get to. We won’t ever be the same people. We won’t ever interact with the world or with people in the same ways again. We aren’t returning to our “old selves” when we “get over this” as some outsiders would like to think. But as time goes on, we can choose to gain something from this experience and choose to search for some light in the darkness.

We are childless parents. I can hardly say it out loud. Two nights ago was the first time I could even say it to myself and my husband. Someone posted a comment on my blog calling me “mama”, and saying I am a great mom—present tense— a key element to break me into this reality, and cause a rush of tears. Tears because it’s so sweet that someone else acknowledged it to me, and tears because it started to feel real. You are a dad I told Tommy and I am a mom. It’s surreal because we weren’t supposed to have those titles until June…or at least not in an obvious way. It’s too soon, on some levels it doesn’t seem like we’ve earned it yet, but here we are. And then I think, of course we’ve earned those titles. We, and others in our situation, are experiencing the undoubtedly worst possible loss, and we are experiencing more pain than many parents will ever experience in their whole lives with their children. We put all the work in, we go through the agony of the loss, the aching of the emptiness, try not to let it break us as we navigate a new normal, and yet we don’t even get the balance of joy in holding our children and hearing them cry for us, laugh for us, or throw tantrums for us. We are left without words. How do we answer the question Do you have children? without making others uncomfortable, which in turn makes us uncomfortable. We find ourselves in this strange place in life and don’t know how to enter back into the world.

We decided we needed to get out of the house this weekend and had received free USC basketball tickets, so decided to go as an attempt of something. I seem to cry as soon as I enter into crowds, so I dragged myself up the stairs to our seats and tried to focus on a losing game. I don’t think this happens at every game, but for the only particular one we decided to attend they had a half time show where they brought about 50 little girls about 3 years in age, all wearing pigtails, onto the court to do cheers with the cheerleaders. It felt like the one thing we did to try to distract ourselves turned into what felt like a flaunting of everyone else’s living daughters in the stadium. How could I not cry and laugh simultaneously out of the pure I don’t know how to deal with this pain reaction?

And it hasn’t all quite sunk in for us yet. I think the shock is still present, and pain is still dripping into our veins slowly to lighten the load of it’s full intensity. Yet, it feels as intense as we could possibly handle. And what people keep telling us is that this feeling never goes away, you just learn to live with it and the intensity eases…but the pain of this loss will be something we carry the rest of our lives.

And another layer of grief is revealed to us in just that sentence. Grief is exhausting. There are so many layers, and none of which we could ever anticipate or prepare for or ward off. We just have to sit with it.

In yoga, during our meditation portion, we are supposed to state our intention—something we want to become a manifestation in our reality. Earlier last year mine was “Create New Life,” and I would repeat it in ways that I thought that meant for me…

Create new traditions. Create new life with Tommy. Create new life in me (i.e. baby).

And all of that happened. So once it’s a reality, you state a new intention. Mine was: “Grow More In Love,” and I would say it in all forms.

Grow more in love with life. Grow more in love with Tommy. Grow more in love with my baby. Grow more in love with people. Etc.

And now that my baby died, I still feel inclined to have that be my intention. After this experience being so traumatizing both physically and emotionally, I feel growing in love is taking on more tasks. I find myself in meditation on the floor of my bedroom on my yoga mat saying:

Grow in love with my uterus. Grow in love with my cervix. Grow in love with my whole abdomen to create space for new life.

My two intentions are melding together in an attempt to combat fear, and in that space I’m growing in love on new levels that most people don’t even consider. I suppose this is part of the “awakening” process. This is what most people sleep through in life. There’s a heightened awareness for all aspects of life, body, mind, spirit, and conscience. I can’t explain it all. But it’s happening even in my darkest times, in the early stages—in the present. It’s not a hind sight thing.

Nurturing myself and growing in love takes new form. Tommy kisses my belly, and I rub my belly more than we ever did while I was pregnant as an attempt to reverse the memory of pain it now holds. What we are realizing is that this IV of pain drips into us slowly, revealing a long, hilly road ahead of us…a road that doesn’t end, where hills can become less intense if we proactively grab shovels and try to even out the dirt. So we dig, if nothing else than to distract ourselves from the strain the hills have on our spirits—in order to feel meaning or control on some level I guess.

Grief is exhausting. And yet it’s difficult to sleep. Everything starts running through our minds at night, and restlessness is making himself all too welcome in our home despite our best efforts to relax.

Letting Go of My Baby Girl in Her Last Days

Not everyone has the chance to say goodbye to their child when confronted with chromosome abnormalities. Often, the mom goes in for an appointment with her doctor for a routine visit, and is suddenly told the heartbeat is gone, her baby died, and there’s no knowing how long she’s been carrying her dead baby around. What a horrifying reality, really. So, though we were devastated with the news that our baby was dying, and it completely floored us, we readjusted quickly to see that we were fortunate enough to have some time to say our goodbyes and enjoy and love on our daughter as much as we could before she left us, because not everyone gets that same opportunity, and we didn’t want to take it for granted. And I strongly believe babies inside us can feel what we the moms feel, and I didn’t want her to carry the weight of the agony we were feeling in her last days, so I tried desperately to protect her from that pain as much as I could.

We drove to the cliffs to watch the dolphins and sunset, while we ate dinner—tears and all. At one point the waitress came over and asked if everything was ok…she thought we were upset with the food. “We are fine, thanks,” we said. We weren’t fine, but we were trying not to taste the bitterness yet.

The next day we went to a Japanese woodcarving class we’d previously signed up for. We sat there amidst just a few other people who didn’t know us, didn’t know our sad news we’d just learned, and we mindlessly were doing something somewhat creative to redirect our focus. We laughed when people made jokes, and enjoyed the fresh air and the smell of wood chips falling as we all carved away at our projects. I just remember thinking how calming the whole scene was, and I couldn’t help think that she felt it too.

Then we took her to LACMA to see their latest Metropolis II exhibit— a construction of a city with roads and cars moving at fast speeds. Kids walked around with fascination. Even babies in their Ergos seemed interested. I watched with amusement when the boy in front of me, I’m sure just under 2 years of age, climbed over the rope to get closer to the piece. His dad rushed over to pull him back, helping him step back over the rope explaining that in museums we aren’t allowed to get too close to the art work. Those are the things we would have taught our daughter. And I took in the room, walking around all levels, thinking I just want her to hear it all, and feel the motion, the energy of the people and the art as much as possible. Even if it’s just through me and my emotions and the muffled sounds she hears through my skin.

Because, what I realized during those few days, was that part of the grieving process is experiencing this great sadness of missing what you could have done with the person. We had to come to terms with the fact that we were never going to be able to have her grow up with us teaching her things in any other form than in the womb. And it occurred to me that we’d been able to do quite a bit with our daughter already that we would have done with her when she arrived. 

Our daughter was able to travel the world with us. Just a few days before leaving for Paris, we found out I was pregnant, which made the trip that much more exciting knowing we were going there as 3. We bought her a little stuffed mouse from a fancy French boutique and named it Sisi, short for Souris, which is mouse in French. We thought it would be easy for her to say in her early talking years. Sisi will now be a gift for her younger sibling from her some day.

When it came to naming our daughter, we’d spent months and months deciding on what to call her even before she was conceived. We had a notion she’d be a girl, and the name we’d previously picked didn’t seem right anymore knowing we were now going to lose her. We named her Madeleine, a French name, to remind us of our trek in France together and how happy we were on our family trip.

She was exposed to arts, cultures, languages, music, films, and parties. She met celebrities, ate a variety of foods, and had the best possible nutrition. She was loved by us and by others, and she never knew rejection—not even from my body. The life we would have introduced her to, she was already exposed to on some small level.

I’d like to think she would have been a creative soul. She’d teach us things and we’d teach her. Our most likely blonde haired, blue eyed baby girl would probably have been shy and quiet with a rich inner life, but would laugh easily the way we did as kids. We would have cooked together, laughed together, cried and lost sleep together. We’d learn how to be better people together and live peaceful, quiet lives.

But the thing is…all that is happening. It’s been happening over the past 6 months, and continues to happen in it’s own ways still now. It’s not the way we imagined this playing out, and it isn’t the same as having her here in person by any means. Our longing for her now is beyond describable because it runs so deeply through the core of our beings. I miss her companionship of having her inside me, and I ache with that loneliness—the emptiness. I long to hold her and watch her grow up. 

But these thoughts were small things to draw on and find peace on some level when trying to find strength to say goodbye.

Nothing could prepare me to let go. 

In her last days with us, I was thinking how peacefully we wanted to bring her into this world by doing a home birth, offering her a certain stability and peacefulness. So, I lay on some stacks of blankets on my yoga mat and thought, I will allow her to have as peaceful of an exit from this world as I would have offered her an entrance into it. I lay there, with my hands rubbing my belly, talking her through what was happening in the most nurturing way I knew how. Telling her about her illness, telling her how much her dad and I enjoyed her, loved her, and how much we’d miss her. I told her she would be crossing over into another world soon, but that our souls would still be connected because we’ve shared this same body. I told her we’d tell her siblings all about her, and still take her on family vacations with us in our own way. I thanked her for allowing me, us, to help carry her into the next life. And as I lay there, I gave her permission to let go of me, to stop fighting for life for our sake if she was ready to go. And then I just let myself cry and cry with my face turning into the blankets. And in that moment, I felt her letting me let go, like it was a mutual understanding of what was really going on within the deepest layers of this process, like the adult version of Madeleine was coaching me through the pain of that moment to help me endure those last days.

The next ultrasound we watched the screen, and there was no movement. Just a faint flicker of a heartbeat remained. And we knew she was on her way out.