There is always, always, always something to be thankful for.

The days here begin before I'm ready to be awake. The baby is crying or cooing or giggling or kicking, her noise and her motion a clear indication that it's time to get the day started. Sometimes I will set her on the floor with a few toys while I lie in bed for just a couple more minutes and force my eyes to remain open, willing away the sleepiness that will tug at my heels for the rest of the day.

First things first: coffee for me, breakfast for the baby. Playtime on the floor, a book or two, and -- if the baby's breakfast was an immersive (read: messy!) experience -- perhaps a bath. Start some laundry. A walk to the park, some more playtime, and a nap for her. I do a workout video (two, if I'm ambitious), shower. If there's time, I clean up the breakfast dishes.

Our days have a steady and predictable rhythm, with the usual ups and downs: fussy days, giggly days, bumping-into-everything days. Stick and leaf-eating days, two-trips-to-the-park days. Sometimes the steady stream of normalcy we currently enjoy makes the reality of everything that happened just a couple of years ago seem like no more than a really bad dream I had once. 

We're in constant motion these days!

But even when it's not immediately obvious, Ewan is in everything about our normal days: he is why I begin every morning telling Austen, "Good mooooooorning, I loooooove you!" in  singsong voice. He's why I get down on the floor and play with her, and chase after her on my hands and knees. He's why I don't mind a bit of spit-up on my shirt or avocado stains on my pants. He is why her laughter is the best part of my day, and the reason why I thank God I get to be so tired all the time. He's the reason why I look at the swing and the high chair and the board books and the sippy cups and baby paraphernalia that has taken over my house completely and smile.

He's also the reason I'll pause at the end of a day and before I go to fold what's in the laundry basket, notice the lump in my throat, the tear sneaking out of the corner of my eye. I'll remember how she played with a toy that was intended for him first, how I wondered while pushing her in the swing at the park how it would be to have my two-year-old boy in tow. I will think of her pointing at his picture and how it catches me off guard sometimes. That's Ewan, I say. That's your big brother. And I wonder what it would be like, the two of them together. 

It was James' idea to have the monkey as a way of including Ewan in family photos.

I don't know that experiencing sadness to the depth that we did makes our current mostly-happy, incredibly-normal normalcy any happier, but it does offer a striking contrast, throwing into sharp relief just how beautiful it is, this life we have now. It's easy to forget sometimes, even for me, even with a not-so-distant loss that, for most people, falls into the category of "Oh my God, that's so horrible, I can't even imagine."

And so I am thankful for what I have: the messy house, the stained shirts, the piles of laundry waiting to be folded, the dining room table that is in constant need of clearing. The crawling baby I can hardly keep up with, the brown ring under the coffee mug on the kitchen counter, and the dried remnants of sweet potato on the floor. The ear-piercing squeals, the grabbing hands, the cup tossed to the floor yet again. The way she reaches for her mama, the way her face lights up and her cheeks bloom into a smile when her daddy walks into a room. The way she laughs so hard when I corner her and kiss her belly button, her back, her cheeks. The way she claps her hands. The way those little reddish-blonde curls spring out from the back of her head when her hair gets damp.

Morning snuggles with daddy

Two years ago, the story was so terribly different. Of burying my son on a rainy Saturday in October, of digging my fingernails into a rocking chair in a dark nursery, of hanging the Christmas stocking for the baby who wasn't there -- it is still very much a part of our present. It is tucked inside like a nesting doll: not noticeable from the outside, but still real and tangible and just as much a part of the right-now as the parts you can see. 

I'm thankful for all of it. Sometimes I need help to remember those things that live just below the surface, but yes, yes, yes: I am thankful for all that my hands hold, and for all they once held.

Happy birthday, baby boy

It is a mad, mad, mad world where you go to the cemetery to sing "Happy Birthday" to your son who would be 2 now. His little sister (now much older than he ever was) joins us, too young to take in the meaning of the gold letters etched in black stone, the dates below his name, the cross that represents the 16 days in between.

We are starting to tell her: "That's your brother, Ewan." We point at pictures. We pointed at the stone and said his name.

I want to throw up.

Thoughts on a mother's day

I've been through her line at Costco a number of times. I moved here early in my second trimester of pregnancy with Austen, and Jennifer had seen my belly grow and always commented on how much she liked my hair. When she asked if this was my first, I told her truthfully it was my second child. Boy or girl? she asked.

Boy, I replied.

And that's as far as it ever went.

I went through her line again on Friday and she asked if I'd like to donate to the Children's Miracle Network. Before Ewan even existed, I'd give donations when asked. But ever since Ewan lived and died, fundraisers like this one will always receive my support. Even though he didn't come home with us, we admire the people whose work gave him even a little bit of a fighting chance.

She commented again on how cute Austen was and asked if I'd like to take home a balloon with lollipop attached. I know you've got another one at home, she said.

[Deep breath. Here we go.]

Actually, our son died when he was 16 days old. 

The words surprise me a little every time they come out of my mouth. I still have a hard time accepting the reality to which they point, and am taken aback at how matter-of-factly I hear them passing my lips. He had a heart defect, I explained.

I think people are surprised just as much by what they're hearing as they are by how I say it -- and that I say it. Most of the time, my voice doesn't crack and my eyes don't tear. I touch the necklace around my neck that has his name on it when I say it -- something physical that's with me all the time, pointing to him.

Perhaps it sounds too casual coming out -- like I don't miss him, like it didn't hurt like hell, like it doesn't still kill me to wake up every day remembering that I have a son, and that he is dead.

She reminds me of Ewan so much, especially when she sleeps.

I get why people with whom I have such a casual and impersonal customer-checker relationship don't ask the obvious but personal question about why the son I've mentioned is never with me.

But sometimes I wish they would.

She looked positively stunned and was silent for awhile. That must have been awful for you, she said soberly. I'm sorry for bringing up something so painful.

It was painful, I said. But I never mind talking about him. It wasn't ideal at all, not what anyone wants to face. 

Especially with your first, she said.

Yeah. [Long pause]

So (pointing to Austen) she is a little extra special to us. And we have an incredible appreciation for what they do at children's hospitals. They gave our son a chance.

She thanked me again for my donation. Then Austen and I made our way home.

Though anniversaries and days like Mother's Day can hurt a little extra, I don't need them to remind me of who we've lost. I don't need a stranger asking me about the son she's heard about multiple times but has never seen to make my heart hurt.

The truth is, his death is a fact of my life. 

The truth is, I remember it every day and like so many other mothers who have gone through this type of loss, it's a weight I've become accustomed to carrying. Tears typically don't come in the checkout line at Costco or in the greeting card aisle at Target, but in the quiet of our home after the motions of my day have slowed to a stop, and the sun has gone down.

This isn't my first Mother's Day, but it's the first time I'll have a child to hold when we mark the day. Last time, my arms were empty and it felt incredibly bitter. Though the bitter hasn't gone away, this time it will be more than a little bit sweeter.

Both tastes in my mouth, just like every day.

Today is International Bereaved Mother's Day.

Click on the image to find out more.

Continuity

That little monkey has seen and been through quite a lot with this family.

Click image to view a larger version of the photo.

That One True Thing

If you had the chance to let the world know just one thing about you, what would it be?

I had a dream last night that clung to me for hours after sleep had turned to half-sleep and then awake.

I was in an impossibly large crowd of people. Oprah was hosting some kind of major event. I was sitting in the crowd, holding Austen. And one by one, she asked people the question I asked at the beginning of this post:

What is the one thing you want the world to know about you?

And the whole world was listening.

I remember other people sharing, but I don't remember the particulars of their stories. When it came to be my turn, I said this:

"My firstborn, my son Ewan, was born with a heart that was broken -- quite literally broken. He died in my arms when he was 16 days old. This baby girl, his little sister Austen, is our second and it's because of her brother's life and death that she's so incredibly special to us."

There it was: the answer I gave in my dream is just as true when I'm awake. My heart has known all along that if I had to tell the world just one thing, it would be about my children. It would be to tell them about Ewan to make sure he's not forgotten, and to tell them about the beautiful little sister he watches over. It would be to say the thing that, though the world might not see it, is on every breath and in every heartbeat.

It would be to say that one true thing -- that if people can know just one single thing about me, it would be to speak of the ones who hold the greatest claim on my heart.


What about you?
If you could tell the world just one thing about yourself, what would it be?

Let's discuss on the Team Ewan community page.

I don't know what to say.

Brother and Sister

My heart feels stretched so wide to see them together.

The big brother who looks down from heaven, the little sister who made her earthside appearance less than 3 weeks ago. The one who took my heart with him when he left and yet somehow, also left it all for the sibling who would come after him.

Joy at seeing the two of them side by side. Sorrow that neither she nor we will know him. Happiness that she is healthy and safe and growing. Sadness that he never got to experience those things.

There it is, all at once. 

My heart smiles and it weeps all at the same time.

There they are, the little loves who grew inside me.

There they are, the only ones who know the sound of my heart from the inside.

About the pictures ...

I've gotten an e-mail or two about it and some of you may have noticed as well -- many of the pictures on the blog in posts just prior to Austen's birth are not displaying.

If we're connected on Facebook, you may have heard that I learned shortly before Austen's birth that someone was stealing my pregnancy pictures from Flickr and posting them as her own on a social networking site. In order to protect my work and prevent this person from stealing any more of my work, I immediately changed the permissions on all my pregnancy photos as well as all our photos of Ewan so that only trusted friends and family could see them. One of the consequences of this was that the photos that had already been posted in being unviewable -- just about every one going back to September 2010.

Ugh! :o/

Unfortunately, the only fix is for me to go through each and every post and replace the pictures individually. It's important to me that this gets done because Ewan's story and the photos that go with it are incredibly important to me, but as you might imagine with having a 2-week-old around, it's not quite as high on my priority list right now. It will get done eventually.

So I'm sorry for those of you who are coming here for the first time and missing the pictures that accompany our story. But I thank you for being here, and for putting up with the hiccups in spite of it. Thanks for your understanding!!

It Is Never One or the Other

"Caring for this child will be a good distraction from your grief."

It was the second time she had knocked on my door to come tell me about her religion. We had told her about Ewan the first time after the four of us had been standing in our open doorway for nearly half an hour. The taller, younger woman who was with her cried as we briefly shared about the 16 days our firstborn was alive while her more talkative counterpart pointed to leaflets, went on about how hopeful I could be, how good I could feel about seeing my son again -- just like she would see her husband again.

I've written about a variety of tensions here often enough, and I told her how this is one that I hold constantly: that the hope I have in a future resurrection doesn't do away with or mitigate grief to any great degree in my present. "I hold both," I told her. "I can affirm with deep conviction my belief that God will raise my son to life again. And I can also say that living with the daily reality of his loss is hell, pure and simple. I know our pain is not without purpose, and I know we will see him again. But that doesn't change the fact that the present reality is hell."

"But ..."

"There is no 'but' to it," I said. "Though I grieve as one who does have hope -- and I thank God every day that I do -- it still hurts like hell. One absolutely does not do away with the other." Even though I knew this point likely wouldn't be embraced, I had to be adamant.

Though different in some important details, I affirmed that a belief in the resurrection of the body was one that we shared as Catholics -- one I affirmed every time I recited the creed, and one that often enough, reduced me to tears when I thought about Ewan in particular, rising with a body restored and perfect. No broken heart.

This time she told me about how after her husband died, one her children bought her a puppy she didn't want. She told her son, "How is caring for a little dog supposed to help? I don't want this!" Her children told her it was never meant to be a replacement, but something that would daily compel her out of focusing on her grief and her loss. But then she found, she said, that it worked. It didn't replace her husband of course, but it gave her something else toward which she could direct her focus.

"This baby will do the same thing for you," she told me.

Their time at my front door was much shorter this time. She was, I observed during that first visit, one of those people with whom it is difficult to get a word in edgewise, so I didn't get to share what I already knew for sure, which is this:

Caring for Austen will not be a distraction from my grief for Ewan. I've already felt how very not distracting it can be: experiencing with my daughter all the things I never got to experience with my son. Things as simple as a bath or a diaper change, or putting on one of several adorable miniature outfits. Taking a ride in the car. Going for a walk with my baby firmly strapped to my chest. Breastfeeding. Smiles and giggles and coos. Celebrating 17 days of life outside the womb, and every day beyond.

These experiences will create a new tension: a joy in having them and experiencing them with my daughter, and impressing upon me deeply in those early days and in all the days that come after exactly what I missed out on with my son. It won't be a distraction -- it will be a new way of holding my loss close to my face, a way in which I can examine every nook and cranny and detail with a magnifying glass. In enjoying these beautiful moments with Austen, how can I help but think of what we lost with Ewan in light of these particulars?

It isn't one or the other. It hardly ever is. It is both. You can't have it strictly one way or the other, no matter how much you want to. It is hope and it is pain. It is embracing the present and acknowledging that the past will always be a part of you and how you experience life. It is moving on and it is looking back because there is no way you can forget, even if you wanted to. It is messy and confusing and uncomfortable and not the least bit predictable.

I know she meant well in what she said. I get that. But embracing this new life and all the hope and joy that comes with it is, in addition to being a new and joyful experience in its own right, one more way I will learn to grieve my son -- all over again.

Fear Creeps In

If something can go well, it will.

I've seen this on bumper stickers and magnets all over the place. The phrase is a beacon of positivity in a world that tends to see the glass half empty. It is a gentle and encouraging nudge toward recognizing and embracing the good. I can get on board with that -- in theory, at least.

But every time I see of it, I can't help but think of what happened to Ewan. His story could easily be titled "If Something Could Have Gone Wrong, It Did."

From the moment he was first intubated, most things just didn't go right for him. Acknowledging this is not to say that there weren't good things that happened. Like any parents of a child with a heart defect, I can point to the ups in our story just as easily as I can point to the downs. When you're in the hospital with a critically ill child, you learn to ride the waves that come with both. No one expected him to make it through that all-night surgery, for example. And I remember a cardiologist coming to James and I after viewing the echo during Ewan's second trial off of ECMO: "Frankly, I didn't expect it to look that good." He was beaming from ear to ear.

So were we. We called our parents and friends. We updated Facebook. We hugged, kissed, jumped up and down, and had a celebratory bowl of ice cream at the Baskin Robbins down the street. Exclamation points abounded.

Something could have gone well that day -- and it did.

But if you're here, you already know the rest. I don't need to rehash for you just how very temporary the "going well" lasted.

When you've repeatedly ended up on the wrong side of statistics in something as high stakes as your child's life, it is impossible to shake the fear that something can go wrong again -- because it is no mere statistic when you're the one burying the child you gave birth to just three weeks prior. Even for one bent toward embracing the positive, it's difficult not to find that the fear of something going wrong is digging its teeth in. When this happens, not a single platitude out there -- no matter how true or well-constructed -- will change that. You can reason with yourself for hours on end until, in a frenzy, you find that deep down, you remain unconvinced.

It could happen again.

We have both felt it. I've had waking nightmares where my incredibly active daughter is born still. James has repeatedly caught himself referring to Austen as "he," unable to shake the thought that this is Ewan all over again. In many ways, this second birth is even more surreal than our first. Because we had our first baby. And then after a few weeks, we returned home, our lives from the outside looking much like they had before -- almost as if my pregnancy, his birth, his life, and his death never happened. It made the lines between what was real and what felt real a bit blurry. It felt as though someone had taken an eraser to the previous ten months of our lives, but left us with the trauma of what those months contained.

It's hard to shake. I wish that by immersing myself in positive phrases, reinforcing the facts of everything having gone so perfectly this time around, I could drown the fear monster and feel his teeth unclench. There is no reason to think anything bad will happen. The last thing I want is the fear of what could (but probably will not) be rob me of the joy of what actually is. Austen is here. She is active and healthy. Everything about this pregnancy has been perfect. We are preparing to greet  her in the most beautiful and welcoming way we can.

The truth is, I need a whole lot of "If something can go well, it will" right now. So when that fear creeps in, I picture me with my daughter in that first of many unbelievable moments. Labor is over and I'm holding her, her sweet skin right up against mine. There are no NICU nurses. There is no need for IVs or oxygen, no need to have her rushed away. I have no idea what it will feel like to make the leap from imagining I can hold her for as long as I please to finding that I don't need to imagine it anymore -- because it's real. Holding that moment in my mind makes me weep with joy every time as I mourn what all three of us lost the first time, and as I begin to feel those first small waves of healing that come even as I imagine the second.

It could happen that way. It really could happen.

The trauma of what has passed is very real, and that can never be undone. That is here to stay. Though the fear created by what has happened is not an entirely irrational, "out of nowhere" type of fear, it has no bearing on the reality of what is right now. What is real now -- in this very moment -- is that we have every reason to believe that our experience will be very different this time. Perhaps all that good won't undo the scar, but I sense already that the experience we are about to embrace will be a healing balm over it.

The fear will continue to creep in. There is no use in pretending that it won't. But until I have a darn good reason to believe otherwise, I am choosing to cling to hope that it can go well -- and it will.

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.)

September 22 {The Promise}

The promise was never that we would not have reason to cry --
it was that when we did, we would be held.

The promise was never that we would never hurt or suffer --
it was that when we did, we would not be alone.

September 22 will, for the rest of my life, be a day that shines in my memory.
Yes, there were tears. But there was so much goodness and beauty, too.

Beauty Still Wins

When I was quite early in my pregnancy with Ewan -- long before we ever found out about his heart -- I found myself thinking about Eve a lot: specifically the curse. You know, the whole “I will surely multiply your pain in childbearing; in pain you shall bring forth children” thing.

I wrote in this post about how before I was pregnant, I thought that the increased pain referred primarily to childbirth (which it no doubt includes). But having had the perspective of being pregnant, I speculated that it also included several of the less pleasant sensations of pregnancy like nausea, hip pain, not being able to see your toes, and the incredible amount of effort it takes to pick up something you’ve dropped on the ground (again). Maybe it even includes dealing with strangers’ voiced suspicions that you’re expecting twins.

On our fridge

I speculated in this post about what an amazing thing it was that God didn’t do away with childbearing altogether. I mean, I suppose He could have axed the whole pregnancy thing if He wanted to curse the human race more completely. Having created them with His own two hands, their help certainly was not required. But childbearing was something He let them keep. He got the ball rolling, but left the work of making more humans up to them, and eventually to us. Adam and Eve were cursed, but they still got to be a part of something really good that God had started. It may have involved incredible pain, discomfort, and inconvenience, but there was still life. New life had not been done away with completely.

I closed the post with the following paragraph:

“And I wonder if Eve, in holding her children, thought what a terrible and beautiful thing it all was: the exquisite pain in bringing forth the delicate little life she held. I wonder if she looked at those little babes and thought in spite of the all the discomfort and pain that would be fresh in her memory: beauty still triumphs.”

I could not help but think of this post again recently, Ewan’s first birthday fresh in my mind. The exquisite pain of the past year is only too fresh: the body-wracking fits of tears, the depression that seemed endless, the turbulent waves of emotion, the need to deal with painful details and answering awkward questions. All of those things and more were part of the weight we carried. Yesterday I wrote about how beautiful a day Ewan’s birthday was, marked by gladness and gratitude, celebration and laughter. Without denying any of the gritty reality of what the past year has held, James and I were both able to say honestly that Ewan’s first birthday was a beautiful and happy day for us.

And so here they are again, side by side, held in tension with each other: beauty and pain. The presence of one will never negate or mollify the other. But it struck me this weekend that what I speculate of Eve’s thoughts in that final paragraph is true of mine: beauty still triumphs. Something ugly and terrible may have happened -- something that nobody wanted to happen -- but Ewan still exists.

He’s still here in a not-so-tangible but very real way. I can still sense his presence, his life, and his love. He is still a part of our day-to-day reality. The pictures of him that decorate our home call to mind his sweetness, his ferocity, and his life. He might not be right here, but he’s not gone either. And you know what that means? It means that at the end of the day, beauty still wins.

And Everything After {A Photo Reflection}

Anyone who has grieved someone they love can tell you: grief isn't easy. It's some of the hardest work you will ever do. It is intense, unpredictable, and though it does have its stages, they are hardly linear. You can find yourself traveling back and forth and in between denial and anger and bargaining and acceptance and depression any number of times along the way and sometimes, several times in one day.

It's utterly exhausting. And in many ways, it doesn't make a whole lot of sense.

After a night of many tears :: January 10, 2011

Natural human tendency tends to be to protect ourselves from pain whenever we can. Perhaps if I had held back and loved less, or attempted to convince myself that none of it really ever happened, or that none of it mattered, I could have made it easier on myself. Perhaps, as one anonymous commenter noted two months after Ewan's death, I should "just get over it already." You know, snap out of it. Sweep it under the rug and put it behind me.

Yeah. Because it's just that easy: to have a child, give your heart to him completely, watch him die in your arms, and then skip along through life as though it never happened. As if it were just a bad dream I could shake off. As though denying reality were the way to get on with life. As though my heart weren't every bit as broken as his.

I've struggled to find words for my friends who haven't lost children, and even more for those who don't have children at all to try and describe what it feels like to be pregnant, give birth to a child, and bury him three weeks later. For a long time, I couldn't find anything that would even come close. But in a moment of revelatory contemplation I realized quite clearly that it is a taste of hell. I say this without the least hyperbole or exaggeration. There is nothing like a mother's love for her child. Experiencing separation and loss is exquisite torture. There is nothing like nurturing a life from its very beginning only to watch him suffer and to see his life slip through your fingers in its infancy -- and you with all your protective instincts are utterly powerless to stop it. I became one of the many mothers who had all the attendant instincts and no child to care for, and I can't deny the reality that it is a taste of the agony of hell, pure and simple.

And it feels like it will never, ever end.

But. But ...

January 13, 2011

But life does come again, slowly. It dips a toe inside to see how you adjust to its ripples. It can't be forced. It can feel like a betrayal somehow of the one you lost. But experiencing life again doesn't mean forgetting or betraying, or even that in moving on, you don't also continue to feel your loss acutely. It's not an either/or proposition. I believe that after your heart shatters like that, when the pieces start to be stitched back together again, your heart grows bigger. When it does, you find you have the capacity for both at the same time: loss and life, joy and pain, laughter and tears. You can hold onto the trauma that shattered you and continue to mourn it, and also find that you're grateful for how it has taught you to feel more deeply, to love more fully, to embrace the present moment -- in fact, to live out of love instead out of fear or bitterness or denial.

And that's why I say here on the blog header: (and life again). Because life can come back, and it will. Where Ewan is concerned, I know I'll be nursing a broken heart for the rest of my life. I'm under no illusions about that. I also know that in that time, I'll find a greater capacity for joy and life than I ever dreamed was possible. I know it because I have. Even as I weep for the son I buried, I find absolute delight in his healthy baby sister who is so incredibly vibrant and full of life. In my one heart I hold unspeakable grief and pure, unmitigated joy.

January 30, 2011

And I intend to embrace them both.

* * * * *

This concludes the Photo Reflection series leading up to Ewan's first birthday which is tomorrow (9/18)! Please come back tomorrow morning to share in my tribute to recognize and celebrate Ewan's first birthday. Many thanks to all of your for the faithful ways in which you've cared for Ewan and allowed him into your hearts. Thank you for following our journey and honoring our son with us. I've got the best readers in the world!

Also ... for those of you who might be interested, I'm making another appearance on Catholic radio live today (yikes!!) from 2-4 pm ET to talk about Ewan's life in relation to our faith and spiritual journey. You can find your local station at EWTN.com > Radio > Stations (AM/FM or Sirius Satellite), or you listen live from the website by clicking on the "LISTEN LIVE" link on the right-hand sidebar. If you're not able to tune in today but still want to listen, the show will be archived and available for listening within a day or two of airing. Wish me luck!!

Twenty-Four Inches {A Photo Reflection}

The funeral home asked me to bring with me something for him to wear. Neither of us could stand the thought of buying burial-appropriate baby clothes for our child. In a paper bag, I brought with me a normal little baby outfit I had gotten as a gift at one of my baby showers: a newborn-sized onesie with a smiling monkey stitched on the front, and green and brown striped pants that had a big monkey face on the rear end. I brought socks to match. It was adorable and accomplished our goal: we wanted him to look like a baby -- not a miniature adult.

We sat with the funeral home coordinator and discussed prayer cards and program types and photographs, and I didn't fall apart. We talked about burial options and proofing the death certificate and the best time for the service for all the family members coming from out of town. Then the woman we were working with escorted us to a room in the back to make a choice from a selection of caskets.

That's when I fell apart. I lost it at the sight of these burial boxes in miniature, of white velvety fabric covering twenty-four inches of very classic-looking casket with silver handles. Twenty-four inches made to look pretty that meant something terrible and ugly and wrong had happened. It had me wanting to climb the wood paneling looking for a way out. The first time seeing my baby dressed in anything, and he is laid out in a casket. This had to be a nightmare. Wake up, wake up, wake up! 

This couldn't be real. Please God. Don't let this be real.

We buried him on the day he would have been three weeks old, a day when the sky had the decency to be thick and grey with clouds that were heavy and pregnant with rain. James' dad and mine were the pallbearers, each holding on to one small silver handle to carry Ewan's body into the church and then out again, and then again out of the hearse when we arrived at the cemetery.

We stood under a dark tent together, raindrops gathering like fringe around the edges. The rain thrummed against the thick fabric of the tent as the deacon spoke words of blessing, as he spoke of standing with us through that longest of nights. I stood close to my son, thinking of how much had changed since that day three weeks prior when, like Ewan, my hope was also new and beautiful and alive. I thought of how the list of firsts I anticipated when my belly was full with him was now a list of nevers.

When the words were done, we were quiet for awhile. Someone handed me the crucifix that was resting on his casket. I tucked it inside the pocket of my black wool coat and held on. And then we buried him.

Twenty-four inches and a half-sized plot, a white box lowered into the dirt.

* * * * *

In preparation for Ewan's first birthday, I've been reviewing some of the photos we have of his time with us that have never been processed and have never been seen by anyone else. These are some of those photos. I have one more photo reflection to share, and then have something special planned to share with you for his birthday on Sunday (9/18).

A Little Bit of As It Should Be {A Photo Reflection}

If you've been here for any length of time, you know what happened next. By the end of the day, we were back on ECMO. A day or two after that, we learned that Ewan had contracted a blood infection. And a day or two after that, everything was going downhill. He hadn't woken up all day. He hadn't moved. Kidneys were failing. Intestines were dying. Liver was giving up. None of his organs were getting the oxygen they needed. There were positive signs of serious and irreversible brain damage.

The most optimistic of Ewan's surgeons, a wizened older man with sparse light-colored hair and a bow tie, was honest with us about Ewan's condition. We don't see kids come back from this.

I could hardly believe we were being faced with these grim realities and the decision they imposed upon us. We didn't want to give up. And we certainly didn't want to let him go. But letting him linger and continue to fail slowly was unthinkable. I couldn't bear the thought of finding out about the death of my child with a grim middle-of-the-night phone call. If he was going to pass, I wanted to be with him when it happened. So we made the decision to have ECMO shut off, to let nature take its course while in the company of those who loved and fought for him -- and if that meant he was going to leave us, to send him off peacefully. 

Photo by Mary Combs :: October 3, 2010

There were a lot of pictures I could have chosen to talk about this night. But this one reminds me of how for the first time in days, I got to be and feel like his mama. All I was doing was wiping his nose (which was bleeding because of the thinners he was on for ECMO), an incredibly "mom" thing to do. Nurses had done everything else for him over the entirety of his hospital stay: changing diapers, taking care of his oral care, keeping him clean, even putting booties on him. For once it was him and his mama and papa, holding him and wiping his nose. I hated the circumstances, but I loved that in his final moments, it was just us. And we got to wipe his nose. It seems like a very small thing perhaps, and certainly not one of the more cherished aspects of parenthood. But for once, the task belonged to his us: his parents.

Ewan's attending physician came that night as we were all gathering together in his room. He told us that he thought our decision was brave. I'm still not sure if that's true. What I do know is that after a litany of circumstances and events we could not and would not have chosen, we finally got to choose something beautiful for our son. In a deep, wide ocean of not-as-it-should-be, we were able to find a little bit of just-as-it-should-be before he went from this life and into the next.

* * * * *

In preparation for Ewan's first birthday, I've been reviewing some of the photos we have of his time with us that have never been processed and have never been seen by anyone else. This is one of those photos. I will share more as his birthday approaches, and have something special planned to share with you for the day itself.

Nobody Thought We Could Do It {A Photo Reflection}

Our first trial off of ECMO was a terrific and resounding failure. I stood outside Ewan's room that day while doctors crowded inside to see how he handled it when his body had to oxygenate and circulate blood on its own. I nervously clutched with sweaty, white-knuckled hands a small stuffed giraffe my grandparents had gifted Ewan and watched with increasing stress as the monitors showed his blood pressure, heart rate, and oxygen levels plummet.

How far are they going to let this go!? I wondered frantically.

September 27, 2010

I had somewhat of an education on ECMO prior to our admission into the hospital, but learned a lot more once I was there. I knew it was a delicate balance between allowing the body to rest and removing the body's dependency as soon as possible. ECMO proves to be lifesaving for a lot of people, but like any extraordinary life-saving measure, it has its risks. Because the plastic tubing that goes from the ECMO unit and into the patient's body is made of plastic, the patient has to be on a blood-thinner to prevent the blood from clotting. The nurses who ran the ECMO unit were always checking the cells and tubing with a little flashlight for clots that might end up in his body. While ECMO can circulate blood through the body, it doesn't mimic the rhythmic pulsations of the human heart. The organs continue to receive blood, but more in a steady stream rather than with the natural lub-dub of the human body. This can, we were told, lead to organ failure.

So the name of the game is getting off of ECMO as soon as possible.

Between the first trial off and the second trial off, Ewan was sent back to the catheter lab where they used a small balloon to stretch his small pulmonary arteries. Other heart families know how you "pray for pee" when you're in the hospital, and he was making a lot. His body was more dried out the second time around. He was in the best possible position to do well. But I was still nervous.

They performed an echo on the heart while the ECMO unit was shut off during the second trial off. The doctor who reviewed it came out and giddily told me that it looked much better than he ever imagined. Ewan's stats were incredible:  his oxygen levels stayed in an acceptable and -- given the size of his pulmonary arteries -- incredible level of mid-70s to upper 80s. His heart rate and blood pressure remained steady and subjectively, he showed no distress. They had given him a bolus of morphine prior to shutting down the ECMO unit, and Ewan remained wide awake and looking around at everyone as if to say, What's the big deal?! 

James cracked a joke: Chuck Norris called. He wants his baby back.

September 30, 2010 :: ECMO Free!

After more than an hour off of ECMO, he was holding steady. So the decision was made to take Ewan off of ECMO. And there was much rejoicing. I was so proud of him. Nobody expect him to do this well. Nobody expected the little boy with the smallest pulmonary arteries they dared operate on to come off of ECMO looking as good as he did. Nobody expected the little warrior who barely made it out of emergency surgery to make it this far.

So the surgeon came and removed the ECMO canulas and tubing (the ECMO unit is sewn into the open chest, so removing it is a surgical procedure). And then we got to see him again. He was sleeping, but still looking good. Next step, close the chest. Next step, ween down on O2 and get sats that are good on room air. Next step, ween off meds. This day a success, I mentally prepared the checklist of coming hurdles. For the first time in days, I really believed that I would have Ewan in my arms again soon, and that even if it was weeks or months down the road, we would get to bring him home.

* * * * *

In preparation for Ewan's first birthday, I've been reviewing some of the photos we have of his time with us that have never been processed and have never been seen by anyone else. These are some of those photos. I will share one or two more as his birthday approaches, and have something special planned to share with you for the day itself.

Held {A Photo Reflection}

I can count on one hand the number of times I got to hold him.

The first time was at his birth, and it was just for a minute or two. He needed to be measured and weighed, and started on IVs.

The second time was at Children's Hospital, intubated with a too-big breathing tube and on enough morphine to manage his discomfort and render him unconscious.

The fourth time was when we were saying goodbye and he was already slipping, lingering in that place between alive and dead.

No one had to teach me to reach for him: I already loved him and wanted him, but stretching out my arms for him was visceral and instinctual. I had already held him from the time he was the size of a poppyseed. Holding him close was the most natural thing.

But, as any family having a baby with a heart defect knows, nature must give way to medicine: to prostaglandins and canulas and isolettes (appropriately named), to IVs and yellow paper gowns and hand sanitizer. You know it is what is best, but everything in you rebels. He needs those things, perhaps, but no one needs to teach you that he also needs you: your heart, your skin, your warmth, your arms.

If we had any really good days with Ewan, it was the third time I got to hold him: when he was four days old. His only oxygen support was from a nasal canula, so there was no need for morphine. He was awake, alert, and engaged. There were no major tests or procedures that day. For a little while, he just got to be mine. He rested with me for awhile. There were no plastic walls to lean over -- just a mama's ready and willing arms.

Chronologically, it may have only been an hour and a half. But in that space where minutes stretched into an hour and a little more, I lived an eternity. It may not have happened in the way which we had hoped, but it happened: skin to skin, mother and child. For what could have been a minute or so, the universe slowed down, and nature was righted if only so slightly. No more separation. Instead, heavenly peace.

* * * * *

In preparation for Ewan's first birthday, I've been reviewing some of the photos we have of his time with us that have never been processed and have never been seen by anyone else. This is one of those photos. I will share a few more as his birthday approaches, and have something special planned to share with you for the day itself.

Hello, Love. Goodbye, Fear. {A Photo Reflection}

Just two nights before, I couldn't sleep. I was so afraid -- for us, for him. Of what he would suffer, and what we could lose. It was one of those nights when I fell to a crumpled heap on the floor. I was tired of trying to be strong. I sobbed, screamed until my throat was raw, and pounded my fists. I didn't care if I woke the neighbors or not.

It was just two nights before this. This was a very different kind of night.

September 18, 2010

In that moment, there was no time to be afraid. In that moment, I learned something of what it means for love to cast out fear. My love may not have been perfect, but it was all I had, and he had all of it. Without hesitation and without reservation, I loved him. In a way, I couldn't help it.

He was so vulnerable, so broken. He was not the perfectly healthy baby a parent hopes for. But he was mine, and that was enough. I saw that he was strong, and that he was fierce. I saw how much he needed our love, and how ready he was to receive it. All I wanted in that moment was him: to protect him, to fight for him, to tear down walls for him.

Loving him was (and is) worth it: every sleepless night, every tear, every moment I thought the grief would take me, too. Ewan may be gone, but the love is still here.

* * * * *

In preparation for Ewan's first birthday, I've been reviewing some of the photos we have of his time with us that have never been processed and have never been seen by anyone else. This is one of those photos. I will share a few more as his birthday approaches, and have something special planned to share with you for the day itself.

I can't help but think that Ewan had something to do with it.

Those of you who know me personally or who have been reading here for long know that I'm not given to being sentimental. I have feelings of course (plenty of them), and am not afraid of expressing them (I think we all know that), but I'm not the kind of person who is given to adding personal significance to a lot of the things I see around me, or to talking about sad or even normal things as if they are sweet. My preference tends to be for the literal -- give me the truth, straight up, no chaser.

But you also know if you've been reading here that there have been some things I've seen and heard that I've just known were meant for me. Like the rainbow on the day of Ewan's funeral. Like the dream I had before our most recent ultrasound of rocking a sleepy baby in my grandmother's rocking chair. These things -- I am certain -- were meant for me, to point me to hope, a way for God to let me know He sees me, knows my heart, and knows exactly what I need.

I do believe that Ewan can see us from heaven, and that as one of the glorified body of Christ, that he can intercede and pray for us. And I believe that Austen Brielle is an answer to his prayers on our behalf. A gift such as this just smacks of him. Allow me to explain ...

I found out about this pregnancy the week of Mother's Day. It was Ewan's way of saying: Happy Mother's Day, mom. I love you.

Austen's estimated due date is January 11, the same week as my birthday and not-so-incidentally, the same due date my mom had when she was pregnant with me. It was Ewan's way of saying: Happy birthday, mom. I love you.

We just learned and continue to rejoice in the news that the child in my womb is perfectly healthy. We were witnesses to Ewan's suffering, and he to ours (as he continues to be). It is Ewan's way of saying: I don't want you to hurt in the same way ever again. I want you to have your family together at home. I love you, mom and dad.

We learned that our baby is not only healthy, but a girl. It is no great secret that James especially has long dreamed of having daughters. I don't think I could possibly love my son more (and honestly, I would have been thrilled at the news we were having another boy), but my heart rejoiced at the news of a little girl as well -- getting to use the name I've been saving since college, getting to dress her in cute little things, and the possibility of realizing more dreams than I can count. It is Ewan's way of saying: I want you to have all you've dreamed of in a family. I love you, mom and dad.

I just know he was behind all of it -- it was God's to grant, but I believe Ewan asked for every single thing. In his sixteen days with us, he was exceedingly generous with himself in the way he loved us, received love from us, and sought connection and intimacy with us in what ways he and we could. He suffered and fought desperately with a body that failed him in order to try and stay. And in the end, he couldn't. Our hearts break daily for that reality, and concurrently rejoice in the reality that now he's in a position to love us even better.

So ... thank you, Ewan -- from the bottom of my broken, full, and rejoicing heart. I miss you and love you forever, my beautiful boy.

How to Love Them Both

Sometimes, I look down at my rounded belly and exclaim with wonder: Gosh, I'm pregnant again! The reality still catches me by surprise sometimes, even with all the overwhelming evidences that there is in fact, a little life growing and thriving inside me (and kicking, and rolling, and I'm pretty sure -- headbanging).

Pregnant with Ewan

Pregnant with Baby #2

Being pregnant with this little one, I can't help but think of Ewan, and how it felt to be pregnant with him. On top of this, the reality of Ewan's impending first birthday alongside the approaching arrival of this second baby are brewing some tensions in me that are going to take some time to learn to reckon with.

Though I know it's impossible, I harbor a fear of forgetting Ewan -- not in my heart or in my memory, but in how we acknowledge him in our family life. Will having a second child (and possibly additional children) leave us little room to honor the memory of our first? Will the joy of a new baby eclipse the memory of the one we lost? Will the pictures of Ewan that currently don our fridge and our walls and that even decorate his sibling's room be covered up with photographs of memories that have yet to be made?

On the flip side of that, I wonder if our other children will ever feel like they are living in the shadow of the older brother they never got to know. What will I tell his siblings about him, and how will I tell them? Will they ever resent the way we love and remember him? Out of fear of forgetting Ewan in our family life, will they ever feel like I idealize him, speak of him too much, or grieve in an unnatural way?

Some of these questions must seem so silly. Even while I acknowledge this fear of forgetting, I concurrently recognize it to be impossible. And even while I acknowledge that it is right to be joyful in the lives of any additional children that come into our family, I never want this to eclipse the reality that Ewan was and is our first child, that he is and always will be a part of this family. And I never want those in my family who are among the living to feel as though his memory is thrust upon them in an unwelcome way.

I sit here with all these questions and I realize that the larger question at the root of it all is this: How do I love them both? 

How do I continue love the child that is gone, and the ones that are yet to be born? How will my heart stretch between earth and heaven? These questions, like so many others, cannot be answered by the asking and the wondering. It must be answered in the living of it, in the day to day reality into which we are about to enter.

I've heard it said that loss and grief have the power to expand your heart beyond its limits. And how could it not? In my one heart, I hold the grief and the ache and the wounds from the loss of my first, and the bubbling, effervescent, joyful hope from the approaching arrival of my second. They sit side by side, and I must give both their due.

I must learn to let my heart stretch wider to love them both.