Redemption & Healing

Like almost any mother of a newborn, tired is an understatement. Last night was arguably the most restless since she's been born. After sleeping from about 7:30 to 11 pm, she woke up for another feeding and couldn't seem to get enough. We fed, burped, rocked, and waited and then repeated until she was satisfied and at least mostly asleep. Even after that, she flailed and kicked in her sleep, and consequently, I am bleary-eyed and sleep-starved this morning.

Even so, I can't help but spill over with thankfulness at the redemptive moments we continue to experience with her.

In Austen's birth, I had the birth experience I had hoped for but didn't get with Ewan. Austen gets to experience the dailiness of life at home that Ewan never got to experience. And perhaps most rewarding for me, I am there when she falls asleep -- unlike I was able to be with Ewan.

In my current state I cannot remember whether or not I've written about that last night of Ewan's life -- the one where we weren't there, having gone home for the first time in twelve days because he appeared to be doing so well. He was engaged and alert and though on a considerable amount of support, looking good. He was social and engaged, interacting with us at every opportunity. But at some point that night, he went to sleep and never woke up again.

My biggest regret is that we were not there. There were no human, let alone mama or papa eyes holding his gaze as he drifted off. What was the last thing he saw? Was it the warmer that loomed above him? Was it the collection of tubes and needles going into his arms and legs, dispensing medications? Was it the dialysis unit, the ECMO machine, or the tall metal tree stacked with medications being dispensed automatically at steady intervals?

Whatever the last thing Ewan saw on this earth, it wasn't me. It wasn't James. And if I'm honest, I don't think I will ever be able to let go of the simple and heartrending truth that we were not there when he left, drifting off to sleep for the last time. There is not a single recollection of Ewan's life that hurts me more than this one.

So as I'm feeding Austen these days in that last feeding of the day before she drifts off to sleep for the night, I hold her gaze until her eyes are closed. She will fight sleep, eyelids fluttering in a concerted effort to remain open, taking in the world around her for just a few minutes more. And I will wait and hold her gaze until the fluttering stops and she is asleep at last.

In these moments I celebrate the truth that the last thing she sees before she drifts off to sleep is the face of the mama who loves her without measure. My greatest desire for her (and for all the children the good Lord may grant to us) is that she would feel loved and that if, God forbid, she shouldn't wake up, that the last thing she would see on this earth is the face of someone who loves her.

I imagine I will be rubbing my eyes today, praying for the opportunity to steal a few precious moments of sleep, and that there will be many more days like this one. But I got to see her off to sleep. And so night by night, feeding by feeding, what we lost with Ewan is redeemed in loving his little sister.

God bless you, little girl, and your sweet big brother, too.

Gratitude, and Something More

I think last night's status update says it best:

"Sometimes when I'm holding that warm little baby with her head resting on my shoulder, I remember where we've been and what we've lost -- and I am so overcome that I can't help but hold tight and weep with gratitude."

Learning How to Love

A little over a year ago – just before Ewan was born, in fact – a blogger I read asked the following question:

If you had the power to change just one thing in your life right now, what would it be?

What might have been the most obvious answer was not my answer at all. It came as a tremendous surprise even to me to discover that my first response had nothing at all to do with Ewan’s broken heart. In fact, I had to think about what my answer would be. And in the wake of that revelation, I then had to contemplate why my answer had nothing to do with the obvious.

I remember hearing a lot of the phrase "It doesn't matter if you have a boy or a girl, so long as s/he is healthy" during my pregnancy. Once we found out about Ewan's heart, that phrase became offensive. After we found out about his broken heart, I realized the condition of health should not apply any more than the condition of sex. Of course you want your child to be healthy! But even if (God forbid) s/he is not, that child still matters and still needs everything I have to offer in the way of love.

But even I knew I was inadequate to the task.

Looking back on my answer to that question, I can affirm that it is not that I particularly wished for him or for us to suffer. If you’re familiar with the entries prior to his birth, you know how much I dreaded what we were about to face. I think it’s because I, in many ways, had come to accept Ewan for exactly who he was made to be. To wish for him to be any different was to wish for him to be a different person, and I already loved him. I wanted to know the boy I had come to cherish and protect since he was the size of the period at the end of this sentence. I wanted to know the one who had clung so fiercely to the right side of the womb for over thirty weeks, making me lopsided and wobbly -- the same boy whose feet poked through my belly, entertaining me for many days and evenings on end.

My prayers had gone from, “God, please heal my baby,” to “God, please help me to love him exactly as he needs.”

I can assure you that it was not because I was particularly self-sacrificing (or especially masochistic) that my heart changed in this way. Simply stated, it was a grace: not something I possessed within myself, but a gift given to me in order that I might see the person he was and love him, broken heart and all. After he was born, I came to see that in his way, he was perfect -- not in that he was physically healthy and whole -- but in that he was only ever exactly who he was made to be. And in spite of his brokenness (or maybe even because of it), who he was was beautiful.

He had sixteen days with us and, I think, accomplished -- and is still accomplishing -- exactly what he came here to do, which in short, is this:

His broken heart taught mine how to love.

(And I don't think I'm the only one.)

Dear Baby ...

Dear Baby,

As much as I think about you, hope for you, and pray for you, I confess that I've also been spending a great deal of time thinking about your older brother. A day never goes by where I don't think of him and miss him, where I don't wish that things had turned out very differently than they did. This does not mean that I don't want you very much -- because I can assure you, I do -- it's just that my pregnancy with you so far is so much like the one I had with your brother. It is impossible for me not to connect the two in my mind.

Baby Petermann's older brother, Ewan

I have pictures of Ewan at my desk at work. I always look at them throughout the day and remember his soft skin, piercing blue eyes, and the demeanor that was as sweet as it was feisty. Today I found myself weeping uncontrollably every time I looked at them for no reason in particular other than the obvious: he died and he's gone, and I will never stop loving him.

It's because of this that I feel both incredibly hopeful for and protective of you. I don't have any strange or foreboding feelings that something is going to go wrong (like I did before we found out about your brother's heart, and which I dismissed as run-of-the-mill first-time mommy jitters), nor am I worried about losing you the way we lost Ewan. But because of Ewan, you should know even now what you mean to us. It will look different for you than it does for your brother, but you should know that even now, I love you every bit as fiercely as I do Ewan.

The websites tell me that right now, you're barely over an inch long and weigh somewhere around one gram. But don't let that fool you into thinking that even as I write this, that you are not mighty. I feel sick almost all day long and I need extra rest. There was a time when I minded all of this and while I won't sugarcoat things by saying that nausea and vomiting are a walk in the park or something I deal with while donning a smile, I am thankful for these signs that you are alive and well, thriving just as you should be. I do it for you, just as my mother did it for me.

You should also expect that we are all going to make quite a fuss over you. To say we will appreciate bringing you home, staying up with you, cleaning up your diaper explosions, and wiping up your spit is an understatement. While I don't expect I will coast through these moments without complaint, I do expect that I will find myself rejoicing that I get these moments with you at all. What others might see as mundane will be simply miraculous to me. This means there will be lots of kisses and cuddling, and that we may turn into the types of parents who cannot carry on a conversation without mentioning their child, or without photos popping out on display out of nowhere. When you're old enough to realize it, we will probably embarrass you. But if you're old enough to be embarrassed, hopefully you're old enough also to cut us a little bit of slack in that department.

Keep up the good work of growing, little one, and know that even now, there's a big brother who watches over you, loves you, and prays for you too. As big brothers go, I promise you that you really couldn't ask for a better one.

We love you to the moon and back again, and then some.

On being proud

I'm really proud of Ewan.

Our home and my desk at work is plastered with pictures of him. Sometimes I get so caught up in looking, that I will reach out a finger and touch the picture, trying to remember the feel of his skin or hair. I will close my eyes and try to breathe in his sweet new baby scent again. I look at him, and I'm so terribly proud of him. I look at him, and I almost can't believe he came from James and me.

He didn't need to do anything to make me think this way of him. He didn't even need to be perfect -- he just needed to be. This realization has turned my heart inside out.

And the more stories I hear about how Ewan himself has wound its way around those hearts who least suspected it, the more I hear about prayers answered through his intercession, the more my heart swells with pride for the one I call my son. My son, my Ewan. I say it out loud sometimes just to affirm my relationship to him. I can hardly believe this one came out of my body.

I'm so very proud of him.

Learning to be

A few weeks ago, I started writing our story. I actually started a book project. I was getting some of the easier things written out first -- about how James and I met in college and eventually reconnected several years later. When in Nashville, I had a discussion with one of the friends we were staying with (who has had a couple of books published himself) who suggested a different beginning than the one I had originally plotted: our last night in the hospital with Ewan. Show them you're really going to go there.

Naples, FL

He was right. That was the right place to start.

When we got home, I unpacked, went through the mail, cleaned up the bathroom, did laundry. James has been sick with a sinus infection, so we spent some time snuggling on the couch and indulging our current addiction to "Grey's Anatomy". This past Sunday evening, I finally sat down to start pounding out that part of our story. That last night with Ewan is a time I've explored a few times before in my writing and though perhaps I should not have been, I was surprised -- not that I was exhausted and weepy after writing about 800 words -- but at just how deeply exhausted and profoundly weepy I was. That sense of loss is always with me, but being in that night again -- describing the blue vinyl couch we sat on, our conversations with doctors and nurses about Ewan's failing organs that day, and how awkward it was to hold a baby still tethered by his open chest to an ECMO machine -- everything was bubbling right at the surface. It was like I was there holding my dying child again, but without the shock that protected me in those initial hours of loss.

Since that day, I have had moments that have been dark and airless, where it seems as though I cannot catch a breath or see my own hand in front of my face, where it feels as though my heart has shrunk to the size of a dense, cold raisin inside my chest. I have also had moments that were shining with hope, and those where I felt completely numb. I couldn't know that day when I was sitting on the blue vinyl couch with my dying son in my arms what it would feel like in the days, weeks, and months that would follow. But I do now, and so when I look back on that day, it is with a deep knowing and sober understanding that I didn't have (and could not have had) in those first moments. To have felt everything I have in those days that followed illuminates that first day in a fuller way for me -- I see more now about how that day would turn my heart inside out and my life upside-down. Somehow, it makes my recollection of that day feel heavier and weightier, a mighty and sacred thing that will always be with me.

And so I had to step away from the writing for awhile, not because recalling that day brought up anything new, but because it did show me something important, something that I've known on a cerebral level but have only recently started to internalize, and it's this: the loss will always be a part of me. It's not something that I can just get over or get past, and it's not something to be confused about or apologize for. And so while I understood these things, what I'm only beginning to learn goes hand in hand with that knowledge -- that maybe healing doesn't consist so much in seeing a diminishment of the inward experience and outward expression of emotion, but accepting that those things are there and to a certain extent, always will be. Accepting the tears, accepting the pain, accepting the memories that will occasionally make you feel as though all the air has been sucked out of the room.

Without really realizing it, there was a part of my internal dialogue that was telling me to get back to normal, to get on with life, to put on a happy face, to make sure that the number of tears I cried diminished with the passage of time. I would get frustrated and confused when I found myself getting sad or weepy over things that I had wept over a hundred times already. And my internal dialogue would say something rude like: Haven't we been through this already?

I found myself frustrated that I was not nearly as task-oriented as before: that laundry went unfolded and not put away for days, that I would set small daily goals for myself and fail to meet them. This is not who I was before, and I found it nearly impossible to accept.

But what I realized in a new way after writing those 800 words was that because this experience was utterly life-altering, I must arrange my life in such a way that there is space for this huge thing that happened to us, permission for memory and emotion, and for challenging myself in those things for which I don't feel quite ready. I think I was trying to fit this enormous life experience we had into the framework of a life that existed before Ewan came to be. And it won't work that way. I've got to figure out how to let our life fall in line around it, to rearrange things in such a way that I'm not trying to live as though nothing ever happened. I'm sure that with practice, I will get better at answering e-mails again in less than a couple of months, that I will find that in fact, I can fold the towels within 24 hours of the dryer clicking off.

So for now, I'm learning to be in this place that makes room for my family, my work, my friends, and doing those things that are important to me. And I'm learning to accept what it is, arrange it around a loss that wasn't there before. Maybe I won't able to cross as many things off my list as before, but I will figure it out. And if you're still hanging in there with me, I just want to say: Thanks.

How He Changed Me

I don't know how someone could go through the experience of pregnancy and childbirth and not be changed. And though I was able to parent him for a just a little while, mothering Ewan changed me tremendously. He's in a place where he no longer needs me, but that does not mean those places he awoke in me are gone. I imagine I will be noticing how he changed me in a thousand different ways both small and large for the coming months and years.

Ewan taught me to love with my whole heart. Given what we were facing with Ewan, it might have been tempting to hold something of my heart back so it wouldn't hurt as much if we lost him. But it just wasn't an option when it came to my son. I could not hesitate and I could not hold back. Everything in me was compelled toward him: to fight for him, to love him fiercely and unreservedly, and to give him back when it became clear his body couldn't fight any longer. It didn't matter how much it hurt.

I want to learn to love other people that way.

As a result of loving Ewan, I care a lot less about what people think. I have had that "disease to please" to a greater or lesser degree my whole life. While I don't know that I can pronounce myself cured, I'm as close as I've ever been. Loving him gave me a lot of clarity about what really matters, and managing to people's opinions of me really is not high up on that list anymore. I share more openly about what I think and feel without worrying about any number of ways it might be received or interpreted. It's gotten a lot easier to disregard and forget those comments that are misguided or merely meant to be hurtful.

This is an ability I want to retain.

He taught me to see other people's pain. When we were at the hospital with him, it was startling to see just how many families have to fight for their children's health. Though the specifics of each case were widely varied and unique, it taught me to see just how common a thing it is for a child to require medical intervention. Instead of assuming now that everyone else gets "normal and healthy," I recognize that many families have gone through what we're going through. Instead of assuming everyone else's life has been easier, I wonder what kinds of sorrow they might have experienced.

I don't want to lose this.

He taught me that what I think I want is sometimes not really what I want (or need, for that matter). Before we found out that we were having a boy (Ewan!), people often asked us if we had a preference in terms of the sex of our child. If asked, we answered that we wanted a girl but would be happy with whoever God gave to us. Our first ultrasound left us in no doubt that we were having a boy, and one with a very broken heart at that -- there was no deferring to the common "as long as the baby is healthy" disclaimer. And you know what? I would not have traded Ewan for a hundred healthy little girls. He is exactly the baby I wanted.

I always want to remember that not getting what I want can be the best thing that ever happened to me.

Loving him taught me something important about the heart of God. I've always had a hard time really understanding God as Father. Loving Ewan gave me an understanding about God that I had never had before. I understood that fierce longing for profoundly deep relationship. From the earliest moments of my pregnancy, I wanted to know Ewan. I possessed a closeness with him as his mother that no one else could have. After he was born, that longing didn't change even though we were no longer in one body. Nothing could have prevented me from seeking that with him -- no amount of machines or tubes or medications were going to hinder me from seeking relationship him. And it didn't matter how sick he was -- he didn't have to be perfect or healthy or whole for me to love him. He was my child, and that was enough.

Secondly, I learned the depth of pain and loss that results when that relationship is severed, when separation occurs. In those times when the sorrow is so great that I am sure that the walls of my heart will simply collapse in on themselves, I think of how it must wound the heart of God to be separated from His children. In those moments, I recognize that I am not alone in my sorrow, and I recognize how God's heart grieves for those who reject Him and His offer of love.

And what I've experienced is only a drop in the bucket.

May I never forget the depth and breadth of that "reckless, raging fury they call the love of God", and to extend it to others.

I have a feeling that this is only the beginning of the ways in which Ewan has changed me forever, and (I always hope) for the better.

Both/And

Grieving, at least as we experience it now, is not an either/or proposition. It is never entirely one thing or the other. It is both/and, meaning: it is not all tears and sadness. It is not all bitterness.

My sister getting silly the night after Ewan's funeral.

After Ewan's funeral, all our family and some close friends came to our apartment -- by far, it has been the most people we have ever fit into this space. We had food leftover from the funeral reception, and my brother and sister-in-law brought a few bottles of wine for everyone. We talked, we laughed. We had fun. We all actually had fun together, even if at times, it was through teary eyes. I remember looking around the room several times that evening and smiling, feeling warm and loved and happy that everyone was there.

Yes, I said happy.

And even now, our movement through life is not all sadness. We have friends over, and sometimes those friends bring their babies and small children. We want them there. We talk, we laugh. We look at pictures of Ewan and we smile. We miss him, remember him, and talk about him without falling into a heap of tears for a simple reason: as sad as we are that he is no longer with us, he made us smile. He makes us smile.

Answering the question "How are you?" is inevitably complex. I don't know if it's human nature, this desire to make things simple that cannot be simplified, or an inability to hold paradox, but it really is both. It is laughter, and it is tears. It is sad, and it is happy. It is bitter, and it is sweet. It is never entirely one or the other. And to be honest, most days even now, the smiling and the laughter exceeds the tears and sadness. It does not mean we have forgotten, or that we have repressed. It does not mean we have "gotten over."

We experienced grief for Ewan before he was born, not because we had any idea of what would happen, but because we knew our experience would be nothing like what anyone hopes for when they are expecting a child. We had time to be saddened, to be angry, and to learn to accept that our experience with Ewan would be absolutely nothing like what we had hoped or wanted -- for him, or for us.

I think that is what this is for us, this "both/and" in our grief: an acceptance of the outcome, of all the tension and complexity that it brings, of letting laughter in, even while knowing tears will likely come again. Living with loss is an experience that is neither linear nor contained, nor is it predictable. One experience is not identical to the other. I might cry, I might laugh, I might smile with tears in my eyes. I might be angry, or I might go through a whole day without crying at all -- even if that is not what I expect.

It can be a bit of a mess, really -- and that's okay. It really is.

Don't Be Afraid

Before Ewan was born, I had an increasing fear of a list of a million different things that all added up to a big black ball called The Unknown. How bad was his heart? How long would we be in the hospital? How would we be able to make good decisions for him? Would we bring our baby home? How long would surgery take? What if he doesn't make it -- how will I survive?

It made me downright hypertensive.

And then everything happened when we didn't expect it. Instead of being born a week after the due date as I expected, he was born two and a half weeks ahead of it. Instead of having a date and time set for his first surgery, the first surgery was unexpectedly and emergently set when his oxygen saturation levels deteriorated during a routine visit to the cath lab.

There was no time to worry. There was no time to be afraid. 

And so as we walked through and waited through all the situations I had dreaded, all the situations that made my blood pressure rise -- I wasn't afraid. Even though things were worse than I had originally feared they would be -- even though by all accounts, I should have been hysterical, I experienced peace. I understood what was happening, and that the increasingly grim updates we received from the surgeons meant I might not take my baby home. The awareness of that could not and did not escape me. But I kept pumping that night, and I kept waiting. Those were the only ways I knew of that I had to mother him in those moments.

And still: peace. Beyond understanding, beyond my ability, straight from the gracious hand of God to my heart and mind. Right in the eye of the storm, it was there: underneath and all around me.

I stared my worst fear in the face. I walked through the very experience that not all that long ago, I feared more desperately than anything else. And instead of running away screaming, I was able to embrace it -- not because I was strong (because I most definitely was not) and not because I was blissfully unaware (because I knew his body was failing him). It was because in that moment, God gave me the very things I needed: peace to protect my heart and comfort my family, and the ability to do the impossible -- in the very moments that could have been pervaded by fear and resistance, to live in the grace given so we could say goodbye to my son in peace, surrounded by love, and embraced until his very last breath and very last heartbeat.

It was our gift to him, and his gift to us.

This is how Ewan taught me not to be afraid. No matter how large and looming and terrible the unknown may be, there is something bigger. There is grace larger than our fears, peace that is stronger than hysteria, and love big enough to stare down death.

It hardly needs to be said that sadness and grief remain -- and how could they not? I don't expect that my tears will cease any time soon. I imagine that I will continue to weep spontaneously in the check out line at the grocery store, or when picking out clothes to wear. When seeing a healthy baby boy in the elevator or a pregnant woman at work. But I won't be afraid, even of that. The love God gave us in Ewan is bigger than all of it.

I love you, dear sweet boy.

Paradigm Shifting

It might be difficult to admit, but it's true. If Ewan were born healthy and whole, if I had sailed through my pregnancy over smooth waters and under sunny skies, I can tell you what the tenor of my dialogue might be right now.

4 days old

I'm so tired! My nipples are sore. Ugh, that was the nastiest diaper. And did I tell you about how it got everywhere when I was out running errands? I can't get even three minutes to myself anymore ... and the spit-up got everywhere!

Even if it were not my intention, I would quite likely be taking my healthy child for granted, making the minor complaints that I've commonly heard from those with a newborn. I probably wouldn't have stopped to take notice of each kick and movement like I did when I was pregnant, and probably would have been lamenting my sore hips a whole lot more.

But when you get news like we did, it cannot help but change the eyes through which you view not only your experience, but everything around it. Suddenly, everything I had been so worried about before seemed impossibly small. I could not even remember what many of those things were.

Before Ewan was even conceived, it was most definitely the case that he was wanted and deeply loved. We made every possible preparation we could to ensure a healthy pregnancy and a healthy baby. And what we learned was that what happened with Ewan's heart was entirely out of our control -- and I mean entirely, determined by the two cells that came together to make a new little person. There was not a single thing we did to cause it, nor anything we could have done to prevent it or make it better.

This is comforting. 

There is nothing we did to cause this, it didn't happen because of something harmful or wrong that we did.

This is aggravating.

There is nothing we could have done to prevent or change this, and nothing we can do to ensure it doesn't happen again. 

This is completely humbling.

We really have no control over any of it.

These are painful lessons, and it kills me that it takes something like this to get me to pay attention and to stop fretting over whatever those piddly little nothings were that were so terribly irksome before. When I looked into those blue eyes of his, I saw wisdom and beauty and love and everything that matters in life, telling me

This is now. Soak it in. Don't miss it, not a single breath or heartbeat.

Those eyes will be teaching me for the rest of my life. I don't want to miss it: not a single breath or heartbeat.

Our Last Night Together

I'm not the least bit religious, she said, but you can feel the angels in that room.

The ECMO specialist said this to us after she left his room, clocking out at the end of her 7 am - 7 pm shift. We were in the hall waiting for my parents to arrive, calling our families and close friends to let them know we were saying goodbye to Ewan that night.

There were always two nurses in the room with Ewan when he was on ECMO. One ran the ECMO machine and the other nurse was there to keep an eye on everything else. On the day we said goodbye to Ewan, the two of them that were there had a combined ICU nursing experience of nearly fifty years.

The ECMO specialist that day adored our baby almost as much as we did. She was so tender with him, and couldn't get over how beautiful he was. It's so hard to believe that anything could be wrong with him. She helped us to get our hands under him in that little bed to hold him, even with all the tubing and monitors all around. It was difficult to navigate, but not impossible.

By all appearances, he had been doing so well the day before. While James grilled the doctor, I stayed as close to his bed as I could, touching him, talking to him, singing to him. His big blue eyes were wide open and fixed on mine. He moved his mouth as if he were having a conversation with me. Even for all he had been through, he was so beautiful. I stayed with him, my hand on his head, stroking his hair. My other hand finding any other bit of his flesh to touch: an arm, a hand, a leg.

Since he was doing as well as he was, we told our nurses we were going to spend the night at home, about a twenty-five minute drive from the hospital. It was the first time in over a week we had dared spend the night away. We finally left the hospital at about 7:30 Saturday night.

It shouldn't have surprised me the next day to find that things had changed as quickly as they had. We've seen this before, and it doesn't get any easier. He's not neurologically responsive. He hasn't opened his eyes all day. I couldn't believe what I was hearing. But just the day before ...

For our child, that was saying something. This is the boy who managed to stay awake more than one time even after receiving a bolus of morphine, who made sure he saw us if he knew we were in the room. This is the boy who, whenever his nurses touched him, resisted and responded: raising his arms, making a fist, stretching his legs.

When I lifted his arm now, he didn't resist. It would return to his side with a flop. I tickled his feet -- this had always had gotten a response before. Nothing. And then we heard about the infection, and the problems with his intestines. About poor oxygen perfusion. We he was born, everything else about our child save the heart had been perfectly healthy. And now everything was failing him.

The day before had brought so much hope for me. But I knew what this meant. 

It took some time and discussing, but we finally agreed that artificially prolonging his life and waiting for a middle-of-the-night phone call saying he was gone was not how we wanted this to go. If we had to say goodbye, he was going to be surrounded by love and sent off in peace. My sister and a couple of friends were already there. Our friend Mary had come to take pictures for us. When my parents arrived, we descended on his room.

We are here to make this whatever you want and need it to be, the nurse told us. You let us know what you want, and we are here to make sure that happens. I made sure to ask for footprints, handprints, and a lock of hair. We discussed the logistics of extubation and when and how the ECMO would be shut off.

They paged Ewan's doctor who came in his street clothes. He put an arm around each of us and said he was sorry, offered his condolences. For what it's worth, I think you're making a brave decision -- and the right one.

I looked at the man who had been treating my son. He had advocated for Ewan, too. We didn't get to choose anything that really mattered for Ewan -- his heart, his surgeries, I told him. But we can choose this for our son.

The eight of us that were there gathered around Ewan in his bed and we took turns being close to him. I kissed his hands, his head, and I nibbled on those sweet little toes. We prayed over him and cried. Thank you, God, for the gift of Ewan. Thank you for his life ...

We couldn't get the words out without choking on them. A painful ball rose at the back of my throat. I was the one who had pressed to do it this way. And now that it was really happening, it was so much more difficult than I had imagined. I had cried so many times in the course of that week over how I didn't want him to be poked or sliced anymore, how I didn't want him to have to suffer anymore. But I still wanted my baby. I still wanted to bring him home. I didn't want to say goodbye.

Eventually, the prayer turned to song. As we sang, they brought a couch into the room and positioned it close to his bedside. The respiratory therapist extubated Ewan, and the nurse took all the stickers and monitors off his face, wiping off any last traces of sticky residue. James and I sat down, and they put a couple of baby blankets on his lap. I hated that this had to be his first time holding his son. I hated that the only time after his birth that we would get an unobstructed view of his face was at his death.

But I remembered what I had said to the doctor. We didn't get to make choices about Ewan's heart -- but we can choose this.

As the nurses waited outside, James held him and we cried. I touched his feet and kissed his toes, I reached up and stroked his soft brown hair. Even as near death as he was, he was strikingly beautiful. We continued to talk to him, sing to him, pray over him. The others in the room gathered around us to get a closer look at Ewan, to offer us a hand on the shoulder.

Ewan's grandmother and aunt each got to hold him -- everyone got a chance to kiss him, touch him, whisper their love to him.

I was the last one to hold him. Everyone but James and I left the room and I held my son one last time. I cried over him and apologized for what he had suffered. I told him how much I missed him and how much I had always wanted him. I thanked him for fighting for as hard as he did, for having such a strong will to live. And so I held on for awhile. We wept in silence.

Several hours had passed since we had entered his room. James and I both knew that we would never really be ready. But when we were as ready as we could be, we brought the nurses in. We're ready, we told them, giving them the cue to shut off the ECMO machine and every last monitor. The room went silent and still. The color of Ewan's skin changed almost instantly. I held on to him, holding him as close to my own heart as I could, and made sure not to pull away from a single second of it, to take in every last second of his earthly life.

I wept, and I wept. His heart rate slowed and after a few minutes, stopped completely. Ewan was gone. If I had had my say, I never would have chosen goodbye. But since goodbye chose us, I would not have done it any other way. He came into this world in my arms, and that is exactly how he left.

Rest in peace, sweet Ewan. We love you. We miss you. Please pray for us.

* * *

Today (October 15) is National Pregnancy & Infant Loss Remembrance Day. Find out more.

I've heard it said ...

This is one of those posts where, depending on what you believe yourself, everything I write is going to seem so upside-down and backwards. Sometimes I take a step back from the faith I claim as true and acknowledge why, from a certain vantage point, things like what I'm about to say may seem nuts.

If you've been reading here for any length of time, you have a decent idea of who I am and what I believe. I'm not shy about expressing it, or being honest about those things that turn me inside-out with fury. A child has died -- this is impossible to reconcile with anyone's idea of how things "should" be. When it is my child, it is particularly tricky to contend with so many of the claims that are made at times like this -- any line of reasoning is wholly inadequate when dealing with this mountain of grief.

I, like so many other people I know, hoped for a healthy pregnancy and a healthy child (honestly, does anyone hope for anything else with a pregnancy?). I didn't want any drama or special attention. I didn't want there to be any need for a "Team Ewan."

But even when I was pregnant with Ewan -- even after we found out about his broken heart, there was a phrase that kept popping into my mind. So many faithful Christians use it, but I don't think I've ever heard it said in response to the loss of a child.

God is good.

Typically, this is what is said when there is a job promotion. When the cancer is gone. When a healthy child is born without any complications. When the sun is shining, when we got the new house, when we are propping our feet up in the eighty-degree sunshine with an iced tea in our hand. When the kids are doing well, when our bank accounts are full, and when the world is kind to us.

If there is one thing I know now for sure, it is that a dead child doesn't allow for a fluffy theology.

The things Ewan taught me will be unfolding for the rest of my life, and this is a big one. If we believe God is good only when we have a reason to smile at what life brings us, then we haven't embraced the gospel fully enough. The Christian faith is one of carrying the cross, of rejoicing in the midst of suffering. It's not a message of prosperity, where the "good news" is that Jesus will give you whatever you want if you pray the right prayer, have enough faith, and assent to a particular list of bullet points. If that's the message, then Jesus was certainly the most miserable failure when it came to living out the message that he preached.

It begs to be said again that yes, we grieve. Yes, I am and will be angry that Ewan is not here. Yes, I get furious that when so many people around us are having perfectly healthy children, we didn't get that. Yes, I cry and kick and scream until I'm so physically exhausted that I cannot cry or kick or scream anymore. I've said before and will say again that having faith in God and having hope that this is not the end does not cancel out the grief and anger we experience. That is simply not realistic.

But it also begs to be said:

My Ewan was diagnosed in utero with a severe heart defect. God is good.

He nearly didn't make it out of open heart surgery at five days old. God is good.

At 16 days old, his kidneys, liver, and intestines were failing and he suffered from a serious blood infection. God is good.

My infant -- my only child -- died in my arms. And yes, even if I say it through gritted teeth at times, God is good.

I don't claim to be able to explain how or why any of this happened -- and it's not as if the fact that it happened makes me happy. Far from it. It is not something anyone can be trite about, and it is not something that can be easily dismissed or explained. I adamantly reject any easy "bumper sticker" types of responses to our grief, our loss, or to why Ewan suffered as greatly as he did. It is not fair. It is not how it is supposed to be. I am the last one you will find claiming otherwise.

But I do know that God is good -- and that even out of horrible things, He makes good things happen. I also know that I don't know everything. I can acknowledge that because of Ewan's story, all sorts of good things may be happening that I will never find out about. And no -- no amount of good things happening because of him is the same as having him here. And even if we should be so fortunate as to have other children who are born healthy, it isn't as though any of those children could replace him. Even now, we feel keenly that our family is missing Ewan.

So whether I say it through a smile, through my tears, or somewhere unintelligible in the cacophony of kicking and crying and screaming, I say to you: God is good.

Present Tense

Last night, I cried and screamed until my throat was raw. I screamed and kicked and cried until I reached a point of physical exhaustion at which I wasn't able to kick or scream or cry anymore.  My son is gone, and I'm angry. Furious. Experiencing sadness to a depth I didn't know was possible until he arrived.

All around us, people are having perfectly healthy babies. People are getting to hold their children after they are born and then they take them home. They never have to see their children's chests cut open or watch him scream as yet another tube is being inserted in his skin somewhere. I'm not angry that other people get the experience of "normal and healthy" -- I am angry that we didn't -- angry that we or anyone has to know what it's like to bury a child.

We hear a lot about how we will feel better someday -- that one day, losing Ewan won't hurt so much as it does now, that the ache we feel now will subside. I know this to be true.

But if we learned anything from being in the hospital with Ewan -- if there is one skill that we acquired that I hope we never lose -- it is the ability and the need to live only in the present moment. We cannot dwell on a past as recent as half an hour ago, or project into an imagined point in the future that none of us can know, no matter how short the reach into that imagined future is.

Those of you who rode this roller coaster along with us understand the up and down -- how short-lived a victory can be, how one moment you find yourself one step closer to taking your baby home, and how the next, you are making burial plans. Living in light of a congenital heart defect teaches you to expect the unexpected, to celebrate the victories and deal with the setbacks as they come, and to know that getting attached to either does no one any good at all.

While there is laughter in our days even now, the pain I feel at Ewan's loss is unimaginable. I'm not going to sugar coat it. I said goodbye not only to him, but to all the expectations and hopes of being a family and all that means. He was our first, and that means I'm a mother with no child. I've got all a mother's desires and instincts with no child to care for, no baby to hold. I've got an empty nursery, a closet full of laundered baby clothes, a pile of folded baby towels, and a stroller all ready to go. They were all for him, and letting go of all these things doesn't happen easily and will certainly take more than a week. It isn't without hope, but it is excruciating.

And that is where I am at -- all the imagined "somedays" where things are easier, where the burden of grief is lighter -- all the references to a future where it doesn't ache quite as much -- for all that those things may be true, that is not now. And like Ewan taught me, where our time on earth is concerned, now is all we can really count on. So as much as it hurts, as difficult as it is to hold such a painful thing so close, I know it is what I must do: be present without running away to the past or the future, grieve without wallowing, and cry and scream and kick when that is the most honest thing I can do.

Feeling anger and grief do not constitute a lack of faith or belief -- I can still affirm that God is good, that it was in the will of God for Ewan to go, and that much good has come and will come from all that has transpired in the course of Ewan's short life on earth. But there is a tension -- my faith tempers my grief, but it does not eliminate it. I find that I must accept both: the belief that this is not the end, that good can, has, and will come from this, and the truth that (regardless of religion) we all know to be true: this is not how it's supposed to be.

When that day comes where the laughter exceeds the sorrow, and where the burden of grief truly is lighter, I will embrace it gladly without guilt because Ewan taught me laughter too. But there is only one way to get there from here: as the saying goes, the only way out is through.