But here we are.
When we first found out we were expecting a baby, I took for granted that the experience of preparing for and welcoming our first child would be like those of others we knew: getting a nursery ready, picking out names. Installing the car seat, assembling the crib, coming home as a family for the first time. But our experience became something entirely different when we found out we were expecting Ewan with a broken heart. From that point on, everything about our experience was entirely other.
But it taught me to cherish and celebrate every moment. One of the ways I did this throughout my pregnancy, and at least once after his birth, was that I wrote letters to Ewan. And so for my eulogy today, I have another letter for him.
|3 October 2010|
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There are a lot of difficult things about this day. I don’t know how to explain to myself – let alone anyone else – how it is that the sun keeps shining, the birds still sing, and the earth manages to continue rotating when a loss as shattering as this one occurs. It seems that all creation should stop to pay its respects to your passing, give us all a moment to weep and then to catch our breath. It seems that the sky should go black and the earth rip open with a loud groan. Since you left us, I feel as though the fog has rolled in and wrapped itself around me.
It’s not often that I struggle to find words. But since we said goodbye to you late Sunday night, I can never seem to find the right ones. There are words like: sad, grieving, angry, upset, confused, and lost. There is a rightness about them, but as words, they are far too small for this. They aren’t nearly infinite enough.
It was late in January that we found out you were coming to us. Since the moment I saw the first positive pregnancy test, I held close to myself the knowledge you were with me. Long before I could see you or feel you, I wondered at who you were. I remember hearing your heart beat for the first time. I remember sitting at work and feeling the first little flutters inside that were evidence of your life. I remember the day we found out about your broken heart.
Before we knew what was wrong, it was clear to us the doctors weren’t seeing what they wanted to see. And then they told us about your heart. We were flooded with information and suggestions about how to handle it. Instead of “baby,” they called you “the fetus” and used phrases like “terminating the pregnancy.” My instinct was to protect you, to fight for you. I felt like leaping from the table and ripping the words from their mouths.
In the days that followed, we wept for you. We wept for the fight you had ahead of you, for the unique challenges you would face, for the unfairness of it all. The knowledge of your broken heart heightened my appreciation for everything I experienced: every kick and movement, the increasing roundness of my belly, and even the sickness I felt – it was all celebrated, it was all treasured. Not a moment went by that we didn’t rejoice over these signs of life in you.
I told everyone I could about you and your heart. Once upon a time, I would have been embarrassed about doing such a thing. I would hate to take up people’s time or inconvenience them or make them feel uncomfortable. But I felt like everyone had to know about you. And so before you were even born, I set up a blog all about you. And pretty soon, hundreds of perfect strangers from all over the world had joined us in praying for you, in cheering you to victory – and the same people began to love you as we did.
Your personality was evident very early on. It was so clear you were determined to stay nuzzled up against the right side of my belly. When you stretched there, I looked particularly lopsided. This gave many people (including me) a good laugh. One friend suggested that she thought you’d be a little snuggler, and I liked the sounds of that. It was clear to us also that you had no small amount of fight in you. I will never forget the morning that I lay in bed in that space between asleep and awake and you woke me, kicking hard with both feet rhythmically and repeatedly like a snare drum. I remember watching my belly as you got bigger – you entertained us all by showing us your feet, your knees, and your elbows, rolling and squirming all the while, sometimes for hours at a time. I would always stop what I was doing when you moved around like that. It comforted me to feel you, to know how active you were, to know you were alive and thriving.
We tried to do all the normal things that people do when getting ready for a baby: we registered for gifts, bought clothes for you, got a nursery ready. We knew your condition was severe, but we were deliberately hopeful. We talked about things we wanted to do with you, things we could do as a family, things we wanted to teach you. We painted your room, made your bed, set up a changing table. We were ready to welcome you.
Two nights before you were born, I couldn’t sleep. I knew your arrival was close, and I was grieving again for what you would have to face – how scared I was for you, how innocent you were and how I hated what you would have to suffer just to remain alive. I knew that as long as you were growing inside me, you were safe. I could protect you. I couldn’t stop thinking about how I would have offered you my own heart if I could. We always wanted only you Ewan, but we grieved for that broken heart. Nothing about it was fair, and I cried for the injustice of it all. All I wanted was to bring you home, to be your mother, and to love you.
Over the course of my pregnancy, I would hear other mothers make minor complaints about parenthood: the screaming in the middle of the night, diaper mishaps, fatigue, spit-up, and the like. I hated hearing it. I wondered if they knew how fortunate they were to have that. I hated it when people who didn’t know any better said things like, “You must be so ready to be done,” not realizing I would have stayed pregnant forever if I could.
And then you came. I was so certain I’d go past my due date, but you came just over two weeks ahead of it, doing things your own way just as we knew you would. There was no time to be afraid, only to focus on bringing you here as safely as possible. And so I labored through the night and into the early hours of the morning. Just before 10 am on September 18, they placed you on my chest. You didn’t wail as I expected – you simply mouthed gentle cries as if to say, “It’s too bright out here.” Knowing our time together like this would be short, I studied your face and touched every bit of you that I could. I will never forget how you looked at me, how your eyes focused on mine. I knew you, and in that moment, I was certain you knew me. You were every kind of beautiful. It was so good to see you, and impossible to comprehend how there could be anything wrong with you.
And then they took you away.
That was the only time I would see you without the permission of nurses, without slathering my hands in Purell, without oxygen tubes and probes and monitors beeping. Later that day when I finally got to see you again, you looked at me as you had before. You held my finger and I talked to you. I sang the same songs that I sang when I was pregnant with you. I put my hand on your chest. I studied the feel of your skin and your hair. I adored your little dimpled chin. I didn’t want to leave you.
It’s difficult to recall the next two weeks, not because I can’t remember them clearly, but because we had so much hope for you and had to watch you suffer with repeated tests and procedures that no little one should have to endure. It was clear to us and your nurses that you were both tender and fierce. I remember watching as different procedures were performed, how you held the ultrasound tech’s ring and pinkie fingers as she performed an echo of your heart. I remember seeing how angry you got when they put the CPAP on you – how you straightened your arms and stiffened your legs and screamed. I cried for the rest of the day. I wanted so much to take it all from you, to make it all stop. I felt so helpless, and I kept apologizing to you.
At some point, I determined that the time I spent with you in the hospital was time I was going to focus on simply being your mother. Nurses and doctors were plenty, but I was the only mama you had. I spent every moment by your bed stroking your hair, touching your hands, talking to you, singing to you. The day before we said goodbye, you looked at me like you always did – with your intensely soulful, piercing gaze. You moved your mouth as if you were trying to say something. Oh, how I adored you. I soaked in every second that your eyes were locked with mine. You were impossible to leave.
When we went to your room the next day, the doctor updated us on your condition. On top of the heart and lung machine, and the kidney support machine, we learned you had acquired a serious infection in your blood. Your intestines were failing. You hadn’t opened your eyes all day. You no longer responded when touched. As hard as you fought, your body was failing you.
We called family and close friends. We told them it was time to say goodbye. If you had to leave us, we wanted you to be surrounded by those who loved you and had cheered you on. There would be no middle of the night phone call saying you were gone. We would be the ones surrounding you and loving you, free of machines and tubes and wires and tape. And so we took several hours and held you, sang to you, prayed over you. I got an unobstructed view of your face for the first time since your birth. And then when we were as ready as we could be, the final machine was shut off. It was within minutes that you left us. You came into this world in my arms, and that’s exactly how you left, too.
Though you never spoke a word and never left the hospital, you changed the world forever. You had a tiny, broken body and such a magnificent soul. I’ve gotten hundreds of messages from all over the world – from people I’ve never met or known – about you, Ewan. I hear from perfect strangers about how your broken heart somehow managed to soften and heal theirs. Mothers tell me about their determination to hold their children longer and tighter, to be more patient and loving with their little ones because of you. People tell me about how you taught them to be grateful, even for the things that cause them pain. I hear them tell me how they didn’t know what it was in particular about you, but they grieved with us as deeply as if they had lost a child of their own. I hear people tell me they found their faith in God again because of you. You, dear Ewan, shone brightly in a very dark place.
Dear Ewan, I am numbered among many who will be better because you lived. Your time with us was short, but your reach was enormous. Though I will miss you forever, though the grief that comes from losing you will continue to turn me inside-out – though I will continue to have days where I will ask how the sun could shine, the birds sing, and the earth continue to spin – I will hold close to myself the knowledge that while loving you broke my heart, it healed it too.
All my love and more,