Today was hard. How has it already been a third of a year since your birth and death? They say time flies when you’re having fun, but how does it move when you’re also suffering? Some days it feels as though things are moving quickly all around me while things for me feel like they’re in slow motion. It’s almost like I’m stuck in an effect used in the movies. It felt like that at the beginning especially, like things moved in a blur around me while I was still.
It’s difficult on so many levels. I think a lot about how your sisters will feel someday should they choose to read these letters. I worry that they’ll think that I don’t enjoy the days I spend with them, but instead wallow in the sadness of missing you. The truth is, while things with two toddlers is challenging, I love this time I’m able to spend with them. I somehow love them more each day and I adore watching them learn and grow. Sometimes I even get lost in the pure joy of our family moments. It’s difficult because it’s lovely to feel a little lighter and truly enjoy the joy and love our family brings, at the same time, I still think of you and miss you every single day.
Sometimes that joy makes it all harder because I so wish you could be a part of it all. I see your sisters enjoying each other, playing, having fun in that moment and I will feel so full of happiness then suddenly feel such sadness that you will never get to be a part of that sweet bond they share. It makes my heart so sad to think about it. Then the guilt sets in. I feel guilty for feeling joy when I should be sad and for feeling sad when I should be joyful. It’s an interesting balance to try and strike. I’m learning how to be better at it everyday.
I think one of the best things for us all has been keeping you part of our daily lives. We have a photo of you in our family gallery wall behind our dining table and we all talk about you often. As always we hold you in our hearts. Ellie even explained to me recently that she would take you out of her heart and give you the heart shaped rock she told me you’d sent her and then put you back in. A few days ago Rose was pretending to take a photo of me and said, “say cheese, take a picture with Nora and the swings!” It was so very sweet and made my heart swell. When I turned to look at the swings after taking the imaginary photo, a Robin that had been perched on them looked at me through the window and flew away. While the photo she took was imaginary, it was still beautiful and the mental photo I took is priceless.
I stood on the deck grilling chicken for dinner and watching your sisters play out back. I looked out to the woods as the sunlight streamed beautifully through the trees and heard the birds chirping. I took a deep breath and thought of how I wished you could be here with us. I thought of how I wished you were snuggled up in a wrap on my chest while we breathed in the cool evening air of this late spring day listening to the sounds of your sisters’ incredible imaginations. I wished the wind chime that was gifted to us with you in mind would chime as a reminder that you’re always near.
Instead, the wind rustled my hair and made my gaze change directions. There it was, a hummingbird. It flew right up to me, looked at me, almost nodded and flew away into the woods. I knew in that moment that you were there. You were enjoying the sound of the birds, your sisters’ giggles and the gentle breeze. While I was distracted by the hummingbird, Ellie and Rose had settled into the grass and stared off into the woods right where it had flown. The chicken was dry, but in that moment, I didn’t care about anything else outside the beautiful scene before me.
Today was a day… unexpectedly so. I’m sure it had something to do with the extremely busy week we had; spending time with so many wonderful friends and attending several family-centered functions. Each time I thought, “what would this have been like?” I wondered if we would’ve been late because it would be that much trickier to get three three and under ready to go. I know the girls would’ve been so excited to show you off to everyone they know (just like Mommy and Daddy).
Today we were at a party at a friend’s house. I found myself in my current norm of being uncomfortable and constantly wanting to talk about you or cry. Before we even left the house, Ellie told me I should change because my pants weren’t “looking so nice” so I started out a little extra uncomfortable.
I watched Ellie and Rose play with their friends and wondered what it would’ve been like to have you here with them. How I would’ve balanced holding you, playing with one of your sisters and making a plate for the other. I pondered what it would have been like if you hadn’t had HLHS. My mind wandered in the few conversations I dared to have.
In reference to your death and your sisters, a very well intentioned friend said, “At least you have them so it’s not too bad.” I nearly burst into tears. I am extremely grateful for your sisters, I love them immensely. At the same time their existence does not erase the fact that you no longer do (at least not physically here with us). Still, I understand it’s hard for someone to know what to say in the face of a mother who has lost her child and I don’t feel any ill feelings towards this sweet friend. I had moments all day where I went through the motions and a few moments I was truly present and enjoying myself.
I didn’t expect the gut wrenching feeling I had when someone arrived to the party with an adorable, chubby cheeked little smiling baby. Something I normally would have been extremely excited about threw me for a loop today. I avoided them nearly the entire afternoon. The baby was a few months older than you would’ve been, but you’re all I could see when I looked at those cheeks.
It was a very brief point in an appointment with all our doctors. There’s a risk with every birth that the baby doesn’t make it. The likelihood is incredibly small, but it always exists. We shouldn’t plan on it.
Unfortunately, all the things we never planned on in the last nine months seem to be the only things that occurred. I felt you move, not more than five minutes before you were born. Maybe if I had known it was the last time I’d be able to feel you I could’ve focused even better on that than the pain of the contraction that followed and the intense urge to push. We didn’t plan on your cord prolapsing.
The circumstances surrounding your birth and death took us all by surprise. A sentence I’ve heard in many forms since you’ve been born from several different people goes something like this, “At least, in the end, you never had to make that choice.” The only problem is that they’re all terribly wrong. You had a heart condition that wasn’t compatible with life. We could have elected for several open heart surgeries, but they weren’t a cure and with them came no guarantees other than pain. We had to make the choice between palliative care and palliative surgery before you were born.
Technically, we were given the option to wait until after you were born, but the doctors were very clear that it would be harmful to wait to decide should we end up choosing surgical intervention. We also felt it was necessary to have a plan, not just for the sake of having a plan, but because you deserved to have a well thought out decision. So we agonized over the choice before us. We had to choose.
I’ve said it before and I’ll say it again- I strongly believe our hearts knew the right decision for you before our brains were able to accept it. Comfort care was what was best for you, but it took time for our brains to catch up and for us to fully accept what that meant for us all. In the process we spent many nights crying in bed followed by sleeplessness after discussing the choice before us. We had disagreements, mostly when one of us didn’t fully understand what the other was trying to articulate. We read books, did research and had lists of questions for our doctors. We absolutely had to choose. It was a choice that we didn’t know how to make. It was a choice we didn’t want to have to make.
There were people who clearly felt one way about it all, but wouldn’t outright say it to us. There were those that said we’d “always wonder, ‘what if?’” I politely explained to them that no matter what we found to be best for you there would always be a “what if?” What if we hadn’t put you through senseless pain? What if we had? It seemed almost as if there was no right answer, but all along, there was. In time we came to the painful conclusion that palliative care was best for you. I still remember the first time we said it out loud, curled up in bed, tears streaming down both of our faces. We’d both been leaning towards comfort care for quite some time, but when you finally admit it, out loud, it’s terrifying. It was like a massive weight was simultaneously lifted and another placed upon me. The weight of the choice was gone, but the weight of anticipatory grief was great.
The only things I knew were that it was going to be unimaginably difficult to lose you and that was the way it was supposed to be. That “what if?” I was so certain would loom over us wasn’t there. There was certainty in our decision and with that, a small amount of comfort. You would know no pain, no suffering and experience nothing but love. And the love we felt for you then was stronger and bigger than I ever could’ve imagined. From there, it only grew.
This Mother’s Day is a little different than the last few. I went to bed, sick from my second covid vaccine, and wondering how I’d feel today with only two of my three girls with me. I worried I wouldn’t be able to be fully present with them as I mourned the day that should’ve marked you being two months old. It’s strange because I knew all along that we wouldn’t get these things with you. Photos at one month old, a celebration of two months together, your first birthday and beyond. Still, I wish we were woken entirely too early this morning after a restless night full of cries, diaper changes, feedings and snuggles. I wish we could swaddle you up and hold you close. I wish we could see you with your sisters who so badly wanted you too. Ellie exclaimed at dinner just last night, “Nora lives in my heart Mommy!” I hope you can feel that we all love you so much and we all feel the hole in our family no one can ever fill. I can’t decide if I miss all these milestones more because we lost you so abruptly and were robbed of any time with you at all. In the end I think there is no more or less, just different.
I mourn the milestones differently because I’d expected to get at least a little bit of time with you and got none. I will forever imagine what your smile would’ve looked like. You’d be smiling around now. What would your laugh have sounded like? Or your voice? Would you have been absolutely fearless like Rose? Or perhaps you’d have been a bit more cautious like Ellie? I think much like your looks, a little of both of them and a whole lot of unique you, your personality would’ve been all yours. I wish so badly that I could’ve known it. I think you would’ve been relaxed with a good sense of humor, very kind and gentle. Those were the things I felt you being during pregnancy. I felt them in the way you moved and reacted to others. Your soul was a beautiful one and we are so incredibly lucky to have known it at all. The world is missing a beautiful light with unimaginable potential without you in it.
I guess at the end of the day, this Mother’s Day isn’t too unlike the others I’ve experienced as a mother… I’m tired, blessed, and absolutely in love with my babies and the mother you’ve all turned me into. I love you baby girl, today and every single day. I’m so grateful to be the mother of three incredible girls.
One month without you has felt simultaneously like the longest and shortest month of my life. Each day has been painfully long, each night restless, but the collective whole has seemingly gone by in a blur. I think our forever will now be marked this way. The time that came before you and now, the after. The week, month, year after and so on. Maybe we won’t always know the exact mark of time it is after, but it will forever be after. None of us will ever be the same and I will continue to miss you all the time. I still sleep with the blanket you were wrapped in most every night. Sometimes I can tell daddy needs it so I slide it over or insist he hold it. It smells sweet like you and I don’t know how it’s held onto that perfect smell for so long, but for that I am so grateful. Some nights it feels as though your weight is in that blanket; like it’s you I’m holding which breaks my empty heart and comforts it at the same time. I wish more than anything that you were here in the chaos of our family. That you were making yourself and your opinions known over the squeals of your sisters. I wish you were here, annoyed that I was bothering you to take photos that mark your first month with us. Photos that we’d look back on later and say things like, “she still makes that face!” and “remember how dark Nora’s hair was?” and “wow, her eyes have always been so beautiful!” Instead I cried as I looked through the only photos of you we will ever have and dreamt of what color your eyes were. Blue like your Dad, Ellie and Rose or more green like mine? We will never know and it kills me a little. It seems silly, such a small thing, but with each of you that was one feature we always talked and dreamt about while I was pregnant. What will her eyes look like? Do you think they’ll be blue like the other two or will she be the one who gets my eyes, I’d ask. You can tell so much by looking at someone’s eyes. How are they feeling? Are they telling the truth? What might they be thinking? So much can be seen in the eyes of a baby, so much possibility, such big dreams. Maybe they’re dreams we have for you or maybe they’re dreams you have for yourself, but can’t yet articulate. You can always glimpse the first bits of personality in a baby’s eyes. I was so looking forward to seeing yours. I will forever imagine what it would’ve been like.
Today, not many people said anything to me. That almost made it even more difficult. It made it feel like the world is beyond ready for us to be moving on now and not having you acknowledged today, even only in words, was so sad to me. I’m not expecting people to put monthly reminders in their agendas or anything, it was just difficult to have only the grief as acknowledgement that you were truly real. The boundless grief and extra weight I carry are proof of your beautiful existence. You were so perfect and my heart aches with you gone.
It has taken me a long time to bring myself to write this letter, mostly because I was never able to find the right words. How could I possibly express all of the thoughts and feelings I have had over the last ten months? How do I write a letter that no parent should ever have to write? How can I possibly encapsulate the sleepless nights, the worry, fear, tears, and also joy that were a part of this experience? To be completely honest, I don’t think I would’ve found that strength had it not been for your mom’s beautiful letters. Her words perfectly captured the highs and lows of our shared experience and pushed me to try and articulate my perspective on our journey together. I’ve decided to write this letter because, as incredibly hard as it is for me to do so, I feel that it serves a purpose. Throughout this journey, I’ve often felt alone, despite your mom’s best efforts. There is absolutely no guidebook for how to be a father to a child you know you are going to lose, nor how a father can express his feelings or appropriately grieve for a lost child. I’ll admit that I felt it was incredibly difficult to truly express how I was feeling to people outside of my immediate family. Our society doesn’t adequately teach men to be comfortable having frank and honest conversations about emotional topics, but I found that such conversations were exactly what I needed to begin to deal with this incredibly painful experience. I sincerely hope that openly sharing my journey as your (Nora’s) dad will help other men realize that it is not only appropriate, but essential to openly and honestly communicate their feelings, especially in times of loss.
I decided to write this letter as a series of snapshots; points that still, for whatever reason, stick out in my mind as I think about you and what your life still means to me.
The waiting. It is what I most remember from the day we found out about your heart. The view from the bench in the waiting room of the ultrasound center in Leipzig is indelibly burned into my memory. Not having your mom’s level of expertise, I still hadn’t fully grasped the enormity of the situation. I remember seeing the doctor’s drawing of your heart and still not truly comprehending. I was trying to wrap my mind around it all while trying to simultaneously comfort your mom and stop myself from crying. I remember staring into the glass administrative offices across from the bench, begging the secretary to finish processing our bill so that we could be anywhere but on that bench. I was upset that (despite our best efforts), our pain was on display for everyone to see, as the bench was just inside the main entrance of the center, right where every expecting set of parents would enter. I felt so alone, like we were the only people in the world who could possibly grasp the depths of our pain. I felt afraid, uncertain of where we had to go from here but certain that there would be more pain and plenty of tears to come.
Next came the insanity. How was I supposed to handle moving our family across the world when all I wanted to do was hide in a corner and cry? My explanation to the myriad of people I needed to talk to became almost robotic. First, explain the situation while trying to keep it together on the phone. Then, accept the condolences or deal with the awkward silence when someone couldn’t find the right words. Let’s face it, there are no words. Nothing we learn growing up provides us with the ability to adequately communicate how terrible we feel when someone encounters a situation like ours. Finally, maintain my cool when some rule or regulation gets in the way of what we really need; a quick move back to the U.S. so we can make the toughest decision we’ve ever made.
The decision. I’ll start by saying that I wouldn’t wish this part of the experience on my worst enemy. After all of the appointments with various specialists, the late-night conversations, and yes, more tears, the decision is all we were left with. Nothing in my life had prepared me for this. How can a parent possibly make a decision that literally means life or death? On one hand, we had the optimistic approach. Let’s fight for you! Let’s do everything we can to prolong your life, even if it means putting you through multiple open-heart surgeries in your first year of life, surgeries that still ultimately couldn’t fix your heart. A few years of life (maybe decades?) is better than nothing, right? I’m sure we’d be capable of explaining it all to you when you were old enough, right? We would definitely be able to tell our child that she was ultimately living with a death sentence, right? Or was that all selfish? Would that just be forcing you to live to make ourselves feel better? On the other hand, we had the realistic approach. How could we force our beautiful baby girl to undergo multiple surgeries when she was too young to understand? How could we put her through all of this pain and discomfort for an uncertain outcome? Could we truly convince ourselves that it was all worth it, even though no one could guarantee that you’d even survive all of the procedures? Here your mom’s experience was invaluable for me. She had worked with kids with your condition and was able to explain what life was like for those children and their families, and how, despite the optimistic words in support groups, the outlook (and the quality of life) was ultimately grim. Looking back, I think I knew the right decision from the beginning, but I needed to go through the excruciating process of wrestling with the pros and cons in order to convince myself that I wasn’t the worst dad ever for letting you go.
The planning. Once we’d made our decision, I lost myself in planning (honestly overplanning) every aspect of your birth with your mom. We spent countless hours covering every eventuality, from what would happen if you were too weak to leave the hospital room and died in our arms, to what would happen if we could bring you to an Airbnb nearby to die, to being able to bring you home, if only for a short while. Your mom picked out the perfect outfit for you, we packed everything we’d need regardless of where we ended up, and we coordinated the movements of a myriad of family members who wanted to be in town to support us. I even went so far as to ask for a police escort back home so we could maximize our time with you. No, even you weren’t special enough to get your own escort, but an amazingly kind dispatcher at a local ambulance company convinced her boss to donate a private ambulance ride so we could ride home with you as fast as possible. She was just one of many people who you touched, people who grieved for you with us along the way.
The birth. March 9th will forever be a beautiful and terrible day in my memory. We arrived at the hospital the evening prior from our Airbnb, all packed and ready to meet you. We had prepared for everything, or so we thought. The entire staff was absolutely incredible and took pains to make sure that everything would proceed exactly how your mom and I wanted it. They even wrote on the whiteboard under the Plan section: Meet Nora June! I don’t remember much about the first parts of the induction process, but I do remember how quickly the birthing process seemed to progress once your mom started pushing (your mom might disagree). Everything seemed to be moving along as expected, until suddenly it wasn’t. Your mom knew what was happening before I did, but she blessed me with another few seconds of blissful ignorance until you arrived. I remember realizing after seeing your face that I wasn’t going to get to hear the beautiful sound of your cry and wondering why. Why weren’t we going to get to meet you like we planned? What had happened? After your mom had explained everything to me the tears began to flow. I made sure that your mom was the first to hold you, and then tried my best to comfort her while I was completely falling apart. When I got the chance to hold you, I couldn’t help but notice how perfect you were. Everything about you was beautiful, which made it even more painful to realize that we weren’t going to bring you home with us. I sobbed with you in my arms, and rocked you like I did with your sisters. I made sure to sing you all of my (and their) favorite lullabies, and almost fooled myself into thinking that you were just sleeping. I watched as your mom read you a few stories, and then helped her dress you in the outfit we brought to bring you home in. We took dozens of pictures, trying our best to prolong the amount of time we had with you before we had to leave you forever.
The empty car seat. As painful as the entire experience was for me, this moment was one that sticks out in my mind as uniquely painful and poignant. I distinctly remember walking through the halls of the hospital and out to our car carrying an empty car seat. I remember wishing with all of my being that the car seat was heavier, and that I was bringing you, our beautiful Nora, home with us instead of needing to walk through the labor and delivery ward and out through the bustling hospital with a physical reminder of our loss. I felt that we were so alone in our pain and thought it cruel that the sun was shining as we walked outside. Driving home from the hospital felt surreal, like the entire experience hadn’t happened because we hadn’t brought you home with us.
The grief. I’m sure I’ll never stop grieving for you. I grieved from the moment we decided what was best for you until we lost you, and I will continue to grieve for you for the rest of my life. I grieve for what your life would have been, and the lives you would have touched. I grieve because I never got to know you, and because I wasn’t able to do a dad’s job and make everything better. I grieve because I can’t take the pain away from your mom, your sisters, your extended family, and everyone else who mourns your loss. However, in this grief, I’ve found so much beauty and love. Not only has our shared grief brought all of the people I mentioned closer together, but it has also reminded all of us of the truly important things in life. I can never thank you enough for that. Your life, however fleeting, truly meant something to all of us.
Scattering the ashes: A small plastic bag. Once we opened the container given to us by the funeral home, that was what you fit in. I remember weighing it in my hand and thinking about how it was impossible to believe that it was all that was left of you. Your mom and I had previously decided that we wouldn’t bury you or leave your ashes at a cemetery, because we didn’t know where we would eventually end up living and couldn’t bear the thought of leaving you alone. Instead, we decided to drive to the ocean and scatter your ashes. We reasoned that if we were to do it there that you would essentially end up always being there. I remember feeling tremendously sad but also happy as we all (your sisters included) took turns scattering your ashes into the sea. Even now, as I sit on a ship finishing this letter, I feel your presence, and I feel comforted knowing that you’ll never be left alone.
After: Is there really ever an after? Does the pain ever truly go away? I think about this now, almost a year after we received your diagnosis, and question if it will ever get easier. While I certainly don’t dwell on the pain as much as I used to, the tears still flow freely whenever I allow myself the time and space to think about you. Society seems to expect me (and your mom) to simply move on at some point, as if losing a child is simply something that one eventually gets over or forgets about. Sitting here now, I can tell you that I’ll never forget. While I’m sure that my grief and pain will evolve over time, you’ll always be my baby girl, and I’ll always be your dad. I’ll never forget you, and I want you to know how much I love you and how incredibly proud I am to be your dad.
There have been so many moments that have felt as though they should have been endings in your story. Times when it seemed appropriate for the narrator to softly say, “The End” as the picture slowly fades to black and everyone is content to walk away, not thinking twice about what comes next. Though each of these moments has reminded me that there is no slow fade, no last curtain and no walking away. Instead of being content and not wondering what comes next, we have to live it. We have to live without you. Your birth alone felt like it was supposed to be some sort of ending. An ending where we had always wanted a beginning. I suppose we got both at once, just in a different way than we had expected.
As time goes on, you will become more of a memory to others. An occasional thought perhaps or a conversation piece, “Did you know they had another baby?” But for us, you are our story. Your memory, your light, it lives on each day in our hearts. We will carry you forever. It’s a beautiful thing to know, but that doesn’t make it easy. It is a very difficult thing to do, to carry on past these endings and into whatever the future brings, carrying the spots in us that you simultaneously filled and left empty. I think with time the loss and pain we feel will become more bearable. Empty will start to feel more bright than dark. I look forward to those days, but in all honesty I’m grateful for the pain and sorrow. I know that sounds ridiculous and counterintuitive, but those things are a reminder of just how much and how fiercely I love you. They’re a reminder that you were here. You are a part of my life now and will always continue to be.
As for today, we faced another moment that feels like it should have been an ending to this beautiful story of yours. The story that will never actually end. We escaped to the beach for a few days to spend some time together as a family before your dad goes back to work and we brought you with us. From the moment we decided to pursue comfort care for you, we knew we couldn’t bury you. We couldn’t bear the thought of leaving you somewhere in the ground and having to move away. We never wanted you to be alone. We also knew we couldn’t keep you in some beautifully made urn somewhere, packed and unpacked every time we moved. You shouldn’t be placed on a shelf somewhere in each new home and left to collect dust until cleaning day. That just wasn’t right. None of that felt right. Much like how you deserved a life free of pain and filled with love, you deserved to be free among the world.
We talked of the ocean a lot while I carried you around safely in my belly. We wanted to bring you there if we got to bring you home. “Everyone should dip their toes into the ocean and feel the sand on their feet.” I remember saying. We even toyed with bringing a bottle of water from the sound to your induction so we would have it there just in case. I decided against this, fearing we’d be dipping your feet into old, smelly, lukewarm water and that didn’t sound like the experience I’d been imagining. We’d also had to prepare ourselves for truly letting you go and so we’d discussed spreading your ashes into the ocean. The waters of the ocean connect the entire world and it could be yours to explore. A way for you to see all the beauty the world offers. A way to see everything you hadn’t been afforded the chance to see in life.
The last time I held all of you in my hands. I saved a bit of your ashes to be made into a ring that I’ll wear so you can come on all of our family adventures too.
So today we packed up the car and drove the short distance from our cabin to the beach. We even brought Barnum so it was truly a family affair. After we parked the car right on the sand, we bundled up against the wind, and walked together towards the crashing waves. We went as the tide was receding to be sure you’d be swept away and sent on to your first adventure. I read a poem as the water lapped at our feet and we prepared to spread your ashes among the waves. We each helped send a little bit of you out into the world, your dad walking calf deep into the water, ignoring the cold. Then your dad and I held onto each other as we listened to your beautifully perfect song and cried, watching as the waves carried you away. As we shared that moment together your sisters played quietly behind us. After a few minutes of silence, we all blew you a kiss, I whispered “I love you” and we turned to go back to the car.
The girls wore the shirts you gifted them. They say, “You have a piece of my heart” and have three heart cookies, one with a bite out of the left side.
Rose running back to the car for some lunch.
Ellie looking out at the water where we had just spread your ashes.
Ellie playing, “you can’t catch me” on the way back to the car.
It felt like the beach should fade away and we should move forward contentedly, but instead we were left with the same holes in our hearts and had to press forward anyway. “What do you want to do now?” I asked “I guess we should go get lunch.” your dad replied. He was right, your sister would soon be restless and we must keep moving forward content or not. So we chased each other and played on our way back to the car where we piled in before driving away from that moment that felt like it should’ve been an end. A single, small white butterfly floated by, seemingly in slow motion as we curved down the road and an eagle circled us overhead. With that I knew that even though I’m still heartbroken that you aren’t here, you truly will be with us forever and letting you go into the ocean was only the second hardest thing I’ve had to do. Now not only will I think of you with each star in a dark night sky, but also with the sound of crashing waves. Peaceful and free.
Love, Mommy
Originally written to Nora on May 4th, 2021
The poem I read aloud before we spread Nora’s ashes is one that we found through another family who chose comfort care for their baby with HLHS. Even though we are not extremely religious, we felt its words deeply, so it seemed the perfect time to read it aloud. Here are the words I read to her-
“I’ll lend you for little a while a child of mine,” God said. “For you to love the while she lives and mourn for when she’s dead. It may be six or seven years, or twenty-two or three, But will you, till I call her back, take care of her for me? She’ll bring her charms to gladden you, and should her stay be brief, You’ll have her lovely memories as solace for your grief.”
“I cannot promise she will stay; since all from earth return, But there are lessons taught down there I want this child to learn. I’ve looked the wide world over in My search for teachers true And from the throngs that crowd life’s lanes, I have chosen you. Now will you give her all your love, not think the labor vain, Nor hate Me when I come to call this lent child back again?”
“I fancied that I heard them say, ‘Dear Lord, Thy will be done! For all the joy Thy child shall bring, the risk of grief we run. We’ll shelter her with tenderness, we’ll love her while we may, And just for having loved her, forever grateful stay; But should the angels call for her much sooner than we planned, We’ll brave the bitter grief that comes and try to understand!'”
I don’t know what drew me to it, the rock on a beach of many that was the only true wishing rock I’d seen that day. There it was just beyond Rose’s animal printed rain boots, nestled up against a log. Something made me notice it, told me to pick it up and look it over. Sure enough, the line went all the way around uninterrupted, with one little jagged bit connecting the beginning and end.
I’d thought about making a wish and tossing it into the water, but wasn’t it partially a wishing rock that had gotten me all the way to losing you? That rock I found with Ellie at the railway museum, picked up, traced, wished upon with love and tossed. The next night I started my period and my dreams of you were lost until I unexpectedly saw a positive result resting on the edge of our bathtub a month later. There were those beautiful dreams again. I was completely shocked in the best way and then we started our journey to where we are today. Here. Without you.
So, back to that beach… do I throw the rock with a wish or do I make the move in the complete opposite superstitious direction and simply hand it over to Rose who had been begging for it ever since I picked it up? I chose to believe that while missing you all the time is the most painful thing I’ve ever experienced, it is entirely worth it because it means you existed. Even if only in my womb, you existed and we had 10 beautiful (albeit challenging) months together and you changed us all. So I kept the rock, distracted your sister and walked with her towards the water. I made the most important wish I could think of for you and I threw it as far as I could into Puget Sound. Then, as I turned around I heard, “Look, it’s a heart!”
Mimi approached me with her arm outstretched, holding a rock just smaller than my hand. The rock was a heart, Mimi said something about it being imperfect, but she didn’t see what she was handing me. An imperfect heart, one with the left side broken and small. A heart just like yours. I guess my decision about the wishing rock was the right one. I put the rock in my pocket and brought it home with us. I knew just the place to put it and now the rock rests among the strawberry plants that I expect will give us ample bounty of your favorite fruit judging by the growth we’ve already seen. I like the idea of you sitting there, basking in the sun and breathing in the sweet scent of ripe berries.
I sincerely hope that my wish for you comes true this time just as it did last time at the railroad museum.
I did everything I could think of to prepare for your arrival. I went to four different grocery stores in two days to make sure we had everything we or any visitors could have needed or wanted. I unpacked as many boxes as I could and put things away so the house we hoped to bring you to would feel more like a home. I made list after list of things we needed to do, buy, and pack. I made lists of items we had that I knew you’d never get to use and tried my best to hide them from myself. I had more conversations than I can count. Conversations with your Daddy, with our families, my friends, your sisters, and our doctors. We talked about your anatomy, medical trials, what we wanted out of life for you, how we could maximize our time with you, where visitors would stay, how your sisters would be cared for and more. We talked over and over every detail there possibly was. Sometimes we even argued, I always felt so guilty that you had to hear us argue. We booked Air BnBs and ordered take out. We made meal plans, advanced Easter plans and birthday plans for Ellie. We came up with a list of things we wanted to do with you, things we really wanted you to experience and we did them. We played in the snow, went to the beach, and had a family dance party. I still have the list with all of its checkmarks on my phone.
People from all over the country booked flights and rental cars. I packed our hospital bag with things I wanted for you- your cozy outfit, blankets to keep you warm, a lovey for you to snuggle and books to read to you. I packed two bags for two scenarios. In one you’d be too sick to leave the hospital and in the other you’d give us more time. I did everything I could think of to prepare. Nothing could prepare me for what came after preparation. Nothing could prepare me for losing you, for walking out of the hospital with an empty carseat, for celebrating and mourning you.
We had a wake to celebrate you. We had planned on it all along. We chose the date before your arrival and told everyone, “if she’s still with us, you can meet her there.” Instead we had a slideshow of your short life and the photos we took with you in the hospital. We laid out the casts of your feet and your hand along with the memory box the hospital gave us. (I still remember receiving that box. I told your dad that it didn’t matter how many times you prepared one, it never prepared you to receive one. I had made those footprints, taken those photos, and tied those green ribbons for many families before. I always knew what I was doing was important for those families and their babies, but until I was handed one I had no idea just how impactful those boxes are. I am grateful for it every day.) Of course we had food and drinks and a bonfire; although I don’t think anyone made a single s’more. I didn’t take a single photo. I wish I had, but I have a few from our families and our closest friends which I cherish. We held your wake at the Air BnB we had been living in for the last couple of months of our pregnancy. It was nice to have something long term before moving into our home, but I hated so much of living there. It’s funny because now I’m nostalgic for the place. I’ve driven by it just to feel close to you. A lot of the day was a blur, but it was so special to have all those people we love come together to celebrate you and support us. It was beautiful, but it was a long day. We ended the day in the dark with nothing but the fire to light the dead of night. Just a few of us were left and it was really nice. Your Uncle Jeff and Titi wrote and recorded a song for you. We had been curious and strangely excited to hear it. Music had helped your dad and I both a lot through all of this and we felt so honored that they created something just for you. They played it for us there as we sat in the warmth of the fire’s glow. It took every ounce of strength I had not to let the primal sob of agony I felt escape as I listened to the beautifully familiar voices of your Aunt and Uncle sing the most perfect words I had ever heard. I don’t think I will ever be able to tell them how much it means to me. It was another thing I wasn’t as prepared for as I thought.
I think the thing I was prepared for least was receiving the world’s most beautifully sad gift bag. The gift bag that held your ashes in what was too small a box, tissue paper and all. When Maggie, the woman working at the funeral home, handed you to me with the sweetest look of sympathy on her face, I almost tore into it right then to make sure she hadn’t forgotten to put you in the bag. It was unimaginably light; the weight of a life, your life. A life that didn’t get a chance to live. We cried in the car as we drove away. We listened to your song and noticed as it was playing, a star on your gift bag. It was sad and beautiful and perfect. I thought of how the last of our family was leaving in a few short days. It would be nice to settle into our home as a family, but I wasn’t ready to let them go. The help everyone had provided was immeasurable. Maybe if the last few family members could stay just a bit longer we wouldn’t have to face the reality that this all truly happened. Maybe we could put off being required to rejoin the world that has been spinning on without us.
Dear Nora 