She is Breaking My Heart Wide Open

It happened with Ewan, and it's happening again. There are times in any given day when, thinking of how much I love this little girl, I have to stop and touch her and tell her over and over again how much she is loved. Without her even knowing it, she's loved me back in a way I'm not sure I will ever fully understand.

There is a normal and natural order to parenting that we skipped over entirely last time. The normal way of things is to have a baby and to hold onto him, caring for his every need. In a not-so-slow seeming progression of his development you learn to let him go, guiding him gradually from dependence and into self-reliance: potty training, doing chores, going to school, and eventually sending him out into the world a (hopefully) responsible, conscientious and well-formed adult.

There was a whole lot that we skipped over last time. Ewan had (and still has) our whole hearts, but one hundred percent of our prior experience with parenting meant letting him go before we had any idea what it was to hang on, even for a little while. And so even with everything being completely healthy and normal with this pregnancy, there are still "what ifs" that disturb my peace from time to time. What if something does go wrong? What if I have to let go too soon again? Then I touch her some more, and tell her how much I love her. I tell her to keep growing and moving and becoming stronger.

We were talking about some of these things at my midwife appointment this morning -- feelings about labor and how we expect it will be different this time, especially on an emotional level. I talked about there will probably be some level of hesitancy in my ability to accept that she will stay will us after she comes -- that I will get to hang on for awhile. No one is going to pull her away, tuck her into an isolette, and hook her up to IVs. I won't have to ask nurses if I can visit her or hold her. I won't have to hand her over to a surgeon and trust him with taking his knife to her skin. The idea of these things not happening this time around still holds an element of the surreal for me.

I talked about how I expect things to be different in that first of many unbelievable moments: the one where I give birth and get to keep her against my skin instead of giving her up to the arms of strangers. And then the one where I can nurse her and watch her doze off into a milk-drunk sleep. The ones where I perform all the very normal mundane tasks for her: changing a diaper, putting on her clothes, bathing her. The one where I wrap her up against my chest and go for a walk. The one where I wake up and she's here: at home.

They haven't even happened yet, but the anticipation of these moments is already beginning to heal my heart. Where I had to give up, I will get to hold on for a little bit. Where last time, love meant letting go, this time, love will mean hanging on for a little while. I know that the "what ifs" will continue to pop up until this string of beautiful and unbelievable moments are actually here. I will continue to acknowledge them, but then touch my little girl and hang on to the picture of hopefulness God gave me months ago.

It is no secret that Ewan broke my heart wide open, teaching me to love in a way I had never loved before. Austen is making it happen all over again, but in a way entirely new -- teaching me to trust, and showing that it's okay to hang on. Letting go will come soon enough, but for now, I will hang on tight, let my heart love, and let myself anticipate and welcome each and every beautiful and unbelievable moment, one right after the other.

Meditations on the Laundry

I didn't do it because I wasn't aware of what was going on -- on the contrary. I could see how things were, but I did it anyway. I could have given up right then, but instead I did the laundry.



On one of the few days we had an afternoon at home, I washed clothes. I folded diapers, arranging them into neat stacks on the changing table. All the onesies and socks and pants that we bought for him hadn't been washed for a few weeks. And so I washed them.

Pressing my BlackBerry between my ear and my shoulder, I talked to my mom. "I know how it looks," I told her, folding his onesies and pants. "But as far as I'm concerned, I'm planning on having a baby at home."

I knew how bad things looked. And while deeply compassionate, the doctors never sugar-coated anything for us. But as long as he had life in him, he was -- in my mind -- going to come home someday. Even when it looked like the night of his emergency surgery was going to be our final goodbye, I went into the mother's room and pumped. He was still alive then, and if he made it, he was going to need his mama's milk.

I wasn't being naive. The act of pumping, like the act of doing laundry, was a choice. It was an audacious and deliberate act of hope in spite of how it dwindled and thinned before my eyes. There is a type of hope that is naive, I suppose -- deliberately blinding itself to reality, burying its head in the sand to protect itself from the truth. But I wouldn't say that the hope that denies reality is really hope at all.

It might have looked to the world like I was burying my head in the sand as I pumped and laundered away. But it was, in the moment, the best way I could find of affirming the life of my son. I would do the laundry until I knew for certain I had a reason not to.

I think of this while I do the laundry in preparation for a little girl's arrival in several weeks. I do not think anything is going to go wrong -- there is no reason at all to expect it will -- but having lost one child already, I cannot blithely pretend as though having a perfectly healthy baby is something that is guaranteed to me.

But she is here, and she is healthy. So as she kicks away happily, I am audacious and confident. I will do the laundry.

A Picture of Hopefulness

It was Sunday morning, and James was sleeping soundly. Against my will, I found myself being pulled slowly out of sleep into that place that is not quite asleep, but not yet awake. I blamed a set of very sore  and very pregnant hips, but couldn't yet concede to yield the tug-of-war between asleep and awake to the latter. My eyes remained closed, and in that state of sleepy not-quite-wakefulness, a very clear picture formed in my mind.

I was sitting in my grandmother's rocking chair -- the one my parents bequeathed to me as a baby gift when I was pregnant with Ewan. I was gently rocking back and forth, a sleepy, dark-haired baby nestled into my right arm and a small book held open in my left hand. In what I saw, it wasn't obvious if the baby was a boy or a girl, but the outfit was: a white onesie with cursive writing on it that reads "mommy loves me", and white and yellow striped pants -- an outfit we really have. I was reading aloud as the baby yawned and drifted deeper into a comfortable sleep.

The picture was sheer bliss, and I held on to it for as long as I could. A baby at home, in my arms. The thought of that alone is too amazing to take in. The detail was striking: the dark hair, the outfit, the book, the rocking chair. All things we really had. All things that accessorize our current reality.

In the more rational parts of myself, I believe that this baby we have yet to meet is perfectly healthy and whole. Though not impossible, it is unlikely that lightning would strike here twice. There are a lot of reasons I believe this, some of which are based in very dry things like statistics and facts. But mostly my reasons have a lot to do with intangible and esoteric things that might be dismissed as irrational or as mere sentiment -- things like faith, intuition, a rainbow on the day of Ewan's funeral, and things I've dreamed of that I believe are meant for me to receive as reasons to believe that everything is okay.

But now that we have the ultrasound scheduled, there are parts of myself that clench inside with fear and anxiety, and the "what if?" question that those hopeful pieces have not yet swallowed continues to niggle and sputter in a dark corner.

In my mind, I keep going to that picture -- startling in its clarity, precise in its detail -- brought to mind not by my willing it, but by something outside. And it fills me with such peace and hope, thinking of that as our not-so-far-off reality. I hope that as our appointment time draws nearer, I can hang on tight to that picture and so stave off the anxiety that threatens to rob us of even the smallest portion of our joy.

This little one's movements are increasingly apparent, every roll and nudge and kick an utter delight to me. I talk to this vibrant wee person we don't yet know and take joy in the life that is so very apparent. I like to think that from heaven, Ewan is whispering love in his little sibling's ear and that he or she dances in response.

Grow and dance, little one. We can't wait to meet you.

On Easter

Resurrection means more to me now by far than it ever did before.

Last Easter, I was barely through my first trimester of pregnancy. We were several weeks away from finding out that we were expecting a baby boy with a very broken heart. And if you're here, you know what has happened since then: how he fought hard for his life after he was born, how everything went horribly wrong, and how we held him in our arms when he died.

Being confirmed, Easter Vigil 2010

It was believing in the resurrection that made it possible to let him go.

As I returned home from the Easter Vigil service last night, I was thinking about the experience of that service and all that has happened since the last Easter Vigil when I was received into the fullness of the Church. Through the first three Old Testament readings and their subsequent psalms, the church is in darkness save for the Paschal candle. Before the reading to the epistle of Romans, the lights are turned on and the Gloria is sung for the first time since before the beginning of Lent. Christ has come, he has been raised -- we were once in darkness, and then comes a great light, and it illuminates everything.

It's such an incredibly joyous moment in the liturgy. Joy bubbled up in my heart, and it felt as though I might have been floating inches off the ground. He is risen.

And not only is He risen, but His resurrection is a preview of what waits for us.

We shall not all sleep, but we shall all be changed, in a moment, in the twinkling of an eye, at the last trumpet. For the trumpet will sound, and the dead will be raised imperishable, and we shall be changed.

1 Corinthians 15:51-52 

As I go back to those final moments with Ewan in that hospital room, I remember that it was just James and Ewan and I. Just like He asked Mary and Martha before He raised their brother Lazarus, I sensed Christ asking me the most important, soul-deep question: "I am the resurrection and the life. Whoever believes in me, though he die, yet shall he live ... Do you believe this?"

I trembled, I held my breath, and I said yes.

That's the special meaning Easter holds for me this year: Christ's victory over death means that ultimately death won't have the victory over us either. His resurrection is a preview of ours. His resurrection, I remembered last night, is a preview of Ewan's. Christ will raise him with a perfect body.

You know what that means? Happy Easter!

Learn to Carry

Nighttime can be the hardest sometimes. A day can be filled with activity: working out, meeting up with people, e-mailing, doing laundry, cleaning the bathroom, getting things done. But when night falls and everything slows down, it's more difficult to shove off the sadness that's been lurking just over my shoulder all day, waiting for me to slow down enough so that it can wrap itself all around me, bind my limbs and squeeze my heart until it feels as though it will burst. It's missing Ewan, and it's all the other things right now that aren't turning out the way we had hoped. It's all those things that make the idea of giving up so tempting.

It's those things that make for dreadful nights, and mornings after like this one.

And it hits me, what I've said before and am living now: I can never really "get over" this. It's always going to hurt. I'm always going to miss him. It will probably be the case that most nights as I turn over in bed to turn out the light and catch a glimpse of our 4-day-old looking up at James and holding on to my index finger that my chest will cave in a little and my eyes prick with tears. I don't expect there to be a day in my life where I wake up and don't feel some sadness when, in the midst of all those new-morning mercies, I realize again that I have been widowed in my motherhood.

I remember going to see our chiropractor for the first time after Ewan died. Dr. Doug had been praying for us and for Ewan, and we dreaded giving him the news. His eyes filled with tears when he entered the room and told us about the 3-month-old daughter he and his wife buried over twenty years ago. Before that day, we had no idea.

It will never stop hurting, at least not altogether. But I can learn to carry it: to walk and breathe with it, to sleep with it, to wake up to it, and to get through each day with it, even though there might be a lot of days where it feels like having a sack of bricks tied around my neck and both ankles. I'm learning how to do it, and will keep on learning.

Let It Be

Let it be to me according to your word.

Those were the words Mary spoke when an angel came to her and said she had been chosen to bear the Messiah. She said yes, and maybe she understood then what it would mean for her: her reputation called into question, the rest of her life turned upside-down in a way she had not anticipated.

From what I've read, the Beatles did not have the Virgin Mary in mind when this song was written. Apparently "Mother Mary" refers to Paul's mother (Mary) coming to him in a dream during a time in which there was a lot of conflict.

But as a Catholic, it's hard not to think of Mother Mary as Christ's mother, and her words to the angel: Let it be to me according to your word.

Let it be.

This song has been in my head a lot this past week. There are a few important things beyond our grief over losing Ewan that just aren't turning out as I had hoped and prayed they would. I'm disappointed and my heart is tired, trying again to accept the opposite of what I wanted.

And so I listen to this and can't help but think of Mary's words: let it be, hoping that wisdom is what is needed at this very moment.

A New Year

Whenever New Year's Eve is imminent, I typically have trouble remembering what I did the year before (not because I've had too much fun, but because we typically don't do anything memorable). Did I do anything fun? Did I stay awake until midnight? Was I at a party? There have been a few such eves that I remember: five or six years ago, a girlfriend of mine and I went to Vegas and rang in the new year at the House of Blues with the Goo Goo Dolls. This year was one I'll remember as well.

Every year in Seattle, they hold New Year's at the Needle. Radio stations and TV hosts come out and in a crowd of tens of thousands, the new year is ushered in with a fantastic fireworks display from the Space Needle. I've never gone before, not being one who enjoys crowds or the crush of people pushing and tugging at each other. My sister had talked about going and since we live so close, we figured this would be the year to do it.

We came equipped with layers of long underwear and thick wool, hand warmers filling our pockets with a toasty heat that was welcome in the bitterly cold 22-degree weather. We wondered at the sanity of those who we guessed were half our age or a little more, wearing tiny strapless sequined things and stiletto heels. Finding our spot on a patch of lawn with a good view, we waited with everyone else for the countdown to midnight.

I still wonder at the appeal of a new year since it might also be regarded simply as one day passing into another, one minute becoming another, just as it has all the year before. But for so many, myself included, there is something about one year passing the baton on to another that is fraught with expectation and something like hope. It's as if a slate is wiped clean and a new beginning is offered to those in need of one.

I wanted to remember this passage in particular, to mark it in a way that would stay in my memory. And I do sense something a little like hope on the horizon. I say that without even really understanding what it means. "Hope" is one of those words that I've used without a concrete idea of what it implies. I hear it a lot from other people too, and given the year we've had, I have to ask -- really press the question: What does that even mean? Hope in what? For what?

There are a lot of Sunday School answers that would get a gold star and an approving nod from the teacher, but after a year like we've had, they are just not cutting it. I think that if I hope for things to get better in the here and now, I'm going to be terribly disappointed. If anything, I guess I'm hoping that what we've been through is not and has not been in vain, that it will make us stronger people, that one day, there will come a time and place where we will be satisfied.

But it is not here. It is not now. Hope or something like it is on the horizon, a light that has pierced the darkness and illuminated everything around me. It is not because my circumstances have changed, but because I have changed. 2010 taught me many things. It taught me a lot of what matters, about what I really need and how much I don't. It taught me that being blessed isn't so much about getting what you want, but getting what you need -- even if it hurts like hell. So much about me was burned away -- things that needed to be burned away, things that were binding me, things that I'm better off being rid of.

It's never been clearer to me than it is now how this place is not my home. And so I put my hope in heaven, for the return of Christ, for the resurrection of the dead -- because quite honestly, that is the only thing I dare put my hope in anymore, and the only thing that can satisfy me now.

2010

What a year it's been.

January 25, 2010 :: We find out we're having a baby.

It has spanned both the heights of joy and the depths of sorrow. Any time I'm tempted to think it was all horrible, I remember the face of that sweet baby boy and how he was mine for a little while.

 My goodness, how inseparable beauty and pain are sometimes!

I don't even know what to hope for in the coming year. No doubt it will bring its own challenges, but I sure hope it won't hurt quite so much as the events of this year did. I hope the coming year is gentle with us. Quite frankly, I hope we get a little bit of a break from the gauntlet that was 2010.

And I hope that we will laugh and smile again -- or at least more often.

Photo by Jen Fox Photography

Best wishes to you for a happy and healthy 2011. Wishing you peace, hope, and much love.

Grief & Faith

Friday night. It was one of those nights. I felt the sadness pulling at me. It had wrapped itself around my ankles, settled in my muscles, and penetrated my heart. My head was cloudy with it, and my arms felt heavy.

I walked into his room and didn't flip the switch. I wanted no light. I closed the blinds to turn away the glow of the lampposts outside. I sat down in the rocking chair in the dark and folded my hands across my belly. I let the tears come. They started slow at first and then came harder, sliding hot down my cheeks, dripping off my cheeks and my chin, soaking my shirt and my pants. Mucous poured out my nose, coating my upper lip, slippery and thick. I opened my mouth wide as if to scream; my throat felt raw. No sound came out. Even if it did, it could never be loud enough.

Though I was sitting up, my chest felt heavy, like it would collapse. Like the walls of my heart were being sucked in, like it was shrinking. I started to gasp, to try to get enough air through the tears and the stuffy nose and the heart that felt like it was failing. The sadness felt like a snowball rolling downhill, gaining size and picking up speed.

I couldn't explain this to myself, however much I wanted to.

I felt like I could go all night and into the next day, like gravity just might carry me to the bottom of whatever this was. I felt like I was just getting started. I felt alone. For all the friends I have who feel with me, who listen to me when I'm like this, not one can feel this for me. No one can relieve me of this, no one can sit in my stead and do my grieving for me.

I thought of some of the things I had heard or read since the diagnosis when I was 20 weeks pregnant, things meant to give me comfort, I think. I heard repeatedly about God not giving us more than we can handle (ha!), or citations from the "Footprints" poem about how when things in life are at their most difficult, that is when God will carry you. Carry me? I don't even know what that means. My life is not ungraced, but I still have to get up every day, put one foot in front of the other, pay the bills, and breathe in and out in a world that feels abominably cruel. I assure you, my flesh is still earthbound and feeling the weight of it. I have trusted Him, I have cried out for help and for mercy again and again. And I am still raw and heavy, still clawing at my eyes and pounding the floor with my fists, still dragging my feet through the mud. Still feeling alone. I know such words are meant to be helpful, but they only pose as answers without offering any substance. They mock the reality that is the life where grief and faith coexist.

I know God is here, and I know that He walks with me. That's something, isn't it? Knowing He is here. I know, rather than feel, His presence. If my assessment of reality was based on what I felt, then I would have been despairing of God's presence a long, long time ago. But I know He's here because He promised it, because I can look behind me and see how He's led me through other valleys filled with tears. 

As sad as I am, I know this is not despair. I have loved and do love Ewan deeply. His life was and is sacred to me. One day I will learn to carry this more gracefully than I do now. One day I will find that it's become a part of me, and that those moments in which I felt the weakest have actually made me strong.

I see evidence of that every day. And every day, I find reason to hope. Every day, the veil lifts a little more, and then a little more. The hope doesn't keep the tears from coming, and it doesn't cause the grief to ebb. But it's there all the same. My hope as I understand it is more a deep-seated conviction than a feeling. It is the understanding -- not that life will be easy and lined with primroses from here on out -- but something else entirely. I know there will be more difficulties, and more after that. But I expect that I will be able to look over my shoulder in those times and remember this place I am right now, where grief sometimes feels infinite and thick and black and impossible to survive, capable of swallowing me whole. And I will remember how alone I felt, how sad and tired I was, and how black and deep the darkness was, but how God walked me through that place, too.

Deep grief and real faith are not mutually exclusive. Jesus wept at the tomb of His friend Lazarus, even though He believed in the resurrection and in fact, was about to raise His friend from the dead. I can hurt and weep, and I can worship and believe. I can be angry and aching, and I can trust and know. Please do not mistake my tears for worldly sorrow or despair. I ache for the separation, for the wrongness of death. But I wait with hope, because I know He is with me yet.

Autumn, Etc.

Autumn has arrived. While we have enjoyed a surprising number of sunny days for this area at this time of year, northwest Washington has not been remiss in showing its true colors. Even as the leaves have changed into brilliant and fiery hues, there have been many days where the rain pounds relentlessly and the wind blows. The clouds hang dark, low, and heavy.

It is difficult to explain how it is possible to spiral through dealing with this loss in such a way that the passage of time increases the difficulty instead of lending ease to it. Given the intensity of our two weeks in the hospital with Ewan, I wondered if I might initially be experiencing shock -- not able to fully absorb what had transpired and who had left us. I wonder now if the same shock that I imagine protected me at first is now easing -- if now, I'm feeling more of all that happened. More of everything.

The clouds hang dark, low, and heavy. The jewel-toned leaves seem out of place in an otherwise gray world.

Yesterday was the Feast of All Saints. In the Catholic tradition my husband and I follow, this commemorates all those saints who have gone on ahead of us and now enjoy the presence of God. As a baptized person who committed no sin, we believe this is what Ewan enjoys now. And we believe that one day at the resurrection, his body will rise whole and healed. This is a good and joyful thing. These are bright and brilliant points of light in an otherwise dark place.

Even so, the celebration of this Mass was bittersweet for me yesterday. As the litany of saints played, as I choked out the words We come to know our rising from the dead during one of the hymns, my tears flowed freely, dripping off of my face and soaking my shirt.

While I embraced the joy at knowing that my son now enjoys heaven, and hope at the prospect of his soul and healed body being united once again, I hate the reality we must live in now: separation, death -- the reality that is not fair, the very one which causes us to clench our fists and scream in our souls: this is not how it's supposed to be. That has us making choices on his grave marker instead of his Christmas stocking.

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.

Integrating Loss

Sometimes, the passage of time makes the loss feel more difficult to bear. Instead of giving me time to become accustomed to the fact that Ewan is not with us, I feel more new reasons to mourn the fact that he's gone. As we pass would-have-been milestones and significant markers in time, I think of how old he would have been, what he would have looked like. What we would be doing right now if he were at home with us.

He would be a month old now. Maybe we would be looking for the right pattern of sleep and waking and feeding. Maybe he would nap in my arms. Maybe he would make faces at me while he slept. Maybe he'd be wearing this or that little outfit. Maybe I'd be lamenting sore nipples or the lack of sleep. Maybe he'd smile at me.

3 days old

A friend and I were talking about loss and grief this weekend. She told me about a book she read that treats grief and loss not as something we mourn and eventually "get over," but as something we mourn that becomes a part of who we are. Instead of shaking it off, we assimilate it -- it becomes something that we learn to integrate into our identities and daily lives.

As difficult as it is to think of carrying grief around with me, the alternative is unrealistic and ultimately unthinkable. When we lose anyone we love deeply, it sounds simply ridiculous to me, this thought of "getting over it." Instead of attempting to shake off the burden that loss creates, we must learn to carry it, and in the learning, become strong enough to keep it with us always.

There are many things in the past month for which I was convinced I was not strong enough: an unmedicated birth, waiting a long night while Ewan had open-heart surgery and the outlook was grim, letting him go that last night in the hospital, and eventually burying him. I cannot tell you how many times I cried over and over from the very bottom of my soul: I can't do it!

And then I did. When someone tells me they could not have done what I did, I am compelled to tell them two things: first, it's amazing what you can do when you are called upon to do it. And secondly, I did not do it alone. It was only by the grace of God and an amazing network of support upholding me from every side that I was able to do any of what I did. It even sounds silly and a little untruthful to me to say "I did it," because I know just how weak I can be and how much help I needed.

As impossible as it sounds now, as much as I cry over and over how I cannot learn to carry this grief, I know that I will -- that just as Ewan was a part of me for ten months, the loss of Ewan will become a part of me. Just as I carried that swollen belly and learned to navigate through life with it, I will (with much help) learn to carry this, too.

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.

Giving Thanks Like Eliezer

The man bowed his head and worshipped the Lord and said, ‘Blessed be the Lord, the God of my master Abraham, who has not forsaken his steadfast love and his faithfulness towards my master. As for me, the Lord has led me on the way to the house of my master’s kin.’

Genesis 24:26-27 (NRSV)

No more ECMO!

Ewan Eliezer lived up to his name today. Today we saw God's grace (Ewan) at work, and today we saw first-hand that indeed, God is my help (Eliezer). We knew his name was no accident.

Anyone who doesn't believe this day lives up to the fullest definition of "miracle" needs to have been here the past 12 days. Repeated echocardiograms and other tests showed that Ewan has one of the severest forms of Tetralogy of Fallot that they've ever dared to operate on. If his pulmonary arteries had been any smaller, we probably would have heard the dreaded words: there is nothing more we can do. Then there was the scary day in the cath lab -- the day where our sweet boy was sent into emergency surgery and we were told he had about a 30% chance of not making it out alive.

That night will be emblazoned in my memory forever. I was protected by such an astounding peace, but remember with chills in my own blood the repeated updates from the surgeons: their faces getting longer with every update, even the most optimistic amongst them losing hope as the hours wore on. I will never forget meeting with Dr. P just after four in the morning and the giddy look on his face, the elation in his voice. He couldn't believe it either.

We came out on ECMO. This would allow Ewan's heart and lungs to rest, allowing him to stabilize and get stronger. ECMO would buy us time, but it would be a priority to get off as soon as it was safe.

Make no mistake: ECMO was lifesaving for our son. But using it is a delicate balance -- there are risks with ECMO too, especially the longer a patient is on it. After James grilled our ECMO specialist from yesterday (every day that the machine was in there, there was a dedicated specialist who ran the machine), we learned that the primary risk is bleeding. Blood thinners have to be added because of the risk of clots forming. Secondarily, the machine isn't able to mimic the rhythmic pulsations of the heart and this can result in organ failure. Thirdly, the risk of clots forming means that there is a risk of a clot going to the brain or lungs, resulting in stroke or pulmonary embolism.

As much as ECMO did for Ewan and for us, eliminating dependence on the machine was priority number one in Ewan's road to recovery.

James and I waited outside the room during the trial off today. I stood outside the room, clinging to Ewan's stuffed giraffe in one arm and furiously clinging to my rosary in the other. I prayed and prayed and prayed as they clamped the machine. Because our first trial off failed so quickly and miserably, I just held my breath. I rocked from side to side on my feet as I watched the monitors. As far as the oxygen saturation levels went (you'll also see me refer to these as "sat levels"), we wanted to land in the mid-70s to low 80s. This is a good place to be, given Ewan's anatomy.

And so we watched as sat levels declined very slowly, flirting around in the mid 80s, hanging around 80 for awhile. His heart rate and blood pressure remained stable. Even though we all had prayed and hoped for this, there was a part of me that couldn't believe what I was seeing. My eyes darted back and forth from the monitor to the clock. As the minutes ticked by, we didn't see Ewan's sat level dip below 75. That was as low as it got. Thirty minutes went by and he was doing just fine. Despite sedation, his eyes were open and he was looking around the room as if to say, "What's the big deal?"

They did an echocardiogram after the machine was clamped to see how blood was moving through the heart. A doctor came out and introduced himself to me and told me that blood was moving well through the shunt, that his heart was pumping well, and that the results were (quite frankly) surprising to him. I didn't think it would go this well! he said, obviously pleased with how Ewan was holding his own.

From a subjective point of view, it was pretty clear that being clamped off of the ECMO wasn't stressing him out. He was relaxed and in no pain, just lying in his bed and looking around.

After almost forty minutes or so of being clamped off of the ECMO, the surgeon was called in. She looked at the monitors and asked how long we had been off of ECMO. Our doctor reported it had been over half an hour. She was pleased with his sat levels and agreed: let's take him off of ECMO.

Those were the words I was longing to hear.

So we called our families and closest friends, all of them rejoicing with us, all of their hearts filled with joy. This is just one step in the long road to bringing Ewan home one day, but it's a big one. Following the surgery to remove the canulas today, both of Ewan's surgeons affirmed: this is a big and significant step in Ewan's recovery. This is one step, but it's a big one. It's a hugely important one.

And so we went to our room, and just like Eliezer did when his prayer was answered in the affirmative, we knelt, fell on our faces, and gave thanks to God. I know that not everyone that reads this blog or who cares about Ewan believes as we do. I'm really not here to try and convert anyone or hit anyone over the head with anything. But having walked this path for nearly two weeks now, I have to stand up and affirm that all the glory goes to God for this. It is simply amazing what these doctors and surgeons can do -- Lord knows we would have lost our son without them. But as severe as Ewan's case is -- as hopeless as it looked time and again -- sheer, dumb luck is not adequate to explain why Ewan is still here. It just isn't. This is a miracle in the fullest, most robust sense of the word.

Ewan is still here, and so we give thanks just like Eliezer did: on our knees, on our faces -- humbled and grateful beyond measure. God has heard and smiled upon our prayers, Team.

Even as we give thanks, we have a new Eliezer prayer, and it is simply for this: stability. Ewan's chest is still open as the doctors and surgeons want to ensure that Ewan remains stable before they close up his chest. Today, he is resting and recuperating. They are not being aggressive with him in any way, and he is still holding his own. Thanks be to God! Once he is stable for a few days, surgeons will look at closing up his chest.

After briefly acquainting us with the steps coming in the future, our doctor said: today Ewan rests, and we will celebrate. Amen to that! There are new steps and challenges that wait for us in the near future, but for now I invite you to give humble thanks with us, to rejoice with us: for this son of ours is alive and off of ECMO!!

Tears & hope

Yesterday was rough. It doesn't get any easier seeing him like this: chest tubes and drains, on more IVs than I've seen in my life, chest open and covered with tape. And I thought about the other families here: how for different reasons, they are walking their own paths of grief. No one really wants to be here. Everyone wants to go home, and with a healthy (or healthier) child.

My arms feel so terribly empty without him. Right now about the only parts of him I can touch are the top of his head and the bottoms of his feet. Sometimes I manage to get a little bit of his leg. I remember another heart mom saying that she kept a stuffed animal with her since her instinct was to hold and cuddle something after birth. As so I've been sleeping with a stuffed giraffe Ewan's great-grandparents bought for him. I'm hoping Ewan can cuddle it soon himself.

We're starting the day on a positive note, having heard that the lung that was mucky and collapsed yesterday is clear and sounding good today. The nurse even said she had to turn down the amount of O2 he was getting because his lungs were that much clearer. He's very negative on his fluid balance as of this morning (just over 400ccs) which is exactly where they want him to be. The nurse said he even kept peeing after they stopped giving lasix. I told her that all Petermanns are overachievers.

And so I've been praying like Eliezer -- and I know you have too. That today is the day Ewan can come off of ECMO safely. Lord, grant us success. Lord, grant us victory today. Saint Pio, pray for us. Hail Mary, full of grace ... these prayers come from my lips steadily and in a stream, one right after the other. I anointed him this morning with some Padre Pio Blessed Oil as I prayed over him. Please Lord, make his little body ready for this. I have hope that this is what the past 24 hours of our collective prayers and the wisdom of our doctors have wrought.

I have hope that, after this bit of trouble, we can have more days like this, but minus tubes, wires, and vents. Please Lord, grant us success. Grant us victory today in getting Ewan safely off of ECMO.

Praying Like Eliezer

And he said, ‘O Lord, God of my master Abraham, please grant me success today and show steadfast love to my master Abraham. I am standing here by the spring of water, and the daughters of the townspeople are coming out to draw water. Let the girl to whom I shall say, “Please offer your jar that I may drink”, and who shall say, “Drink, and I will water your camels”—let her be the one whom you have appointed for your servant Isaac. By this I shall know that you have shown steadfast love to my master.’

Genesis 24:12-14 (NRSV)

If you've read about Ewan's name, you know his middle name is from the book of Genesis, after Abraham's servant. We chose Eliezer because of the tremendous humility and servant's heart he demonstrates. As long as Abraham remained childless, Eliezer stood to inherit all of Abraham's wealth. But then Abraham had a son. In Genesis 24, Abraham sends Eliezer on an important errand: to find a wife for his son, Isaac (the one who would take the inheritance that could have been Eliezer's). He obeys his master, and faithfully discharges the duty of finding Isaac a wife.

Before he finds Rebekah, he prays the prayer above. His prayer is simple and it is specific. It isn't grandiose or sparkly, but modest and practical.

As much as I would love to see the kind of miracles that are as dramatic as raising someone from the dead or giving a blind man his sight, I wonder if we shouldn't be praying for Ewan like Eliezer prayed to find a wife for his master's son: simple, modest, practical. This request is for a miracle measured in inches, not in miles. And when the request is answered, we (like Eliezer) will fall down on our knees and thank God for his provision.

While we do have some long-term prayers in mind, let's try and think of the immediate needs, namely this: getting this baby off of ECMO. Yesterday's surgery resulted in an improvement in Ewan's numbers. After the cath lab procedure today (where they were able to stretch out his pulmonary arteries and the point at which the shunt connects to the aorta), the numbers were even better. But he's still on ECMO. We need to get him off of this machine. His lungs need to do a bit more work before he's ready. But I'm confident that God is able, and I know that if we storm heaven with our prayers, it will happen when it's supposed to.

Quite simply my request is this: let's pray Ewan off of the ECMO machine. In the grand scheme of things, it's a small request, but an important one. It only asks for independence from a machine. Please pray with me for this request: that Ewan's body would be strong enough to handle getting off of ECMO. It sounds like doctors want to do another trial off of ECMO in the morning. We pray that when he is tested tomorrow, that we will see that this little fighter can handle it.

Ready, team? Let's pray baby Ewan off of ECMO.

Contractions

Ever since this journey at the Children's Hospital really started for us, I have been comparing it to labor: how the valleys on this roller coaster are like the pain of contractions, and how the peaks are like the rests in between. I remember thinking when we got here that if I could give birth and endure back labor without any medication, how I could do anything, even if it felt impossible. I remembered how I kept thinking labor was impossible and how I did it -- how we got through it. And how we would get through this, too.

We've had a good few days of rest between contractions -- the first big contraction of emergency surgery and that long, long night and the rest in between: days of boring, days of ECMO being dialed down, days where Ewan was doing well, nights where we could enjoy his wakefulness.

Another contraction came today.

They did the first trial off ECMO today. Ewan didn't handle it well. I held my breath and my heart rate escalated as I watched his stats drop: his heart rate, his blood pressure, his O2 saturation levels. The numbers dipped to scary levels. It wasn't time to take him off. An echo was ordered, as was another cath lab procedure.

When they started it up again, his heart rate was up but his color wasn't coming back. They had to switch out the entire ECMO machine. When they did an echo later, they found that some pressure was built up around his heart creating resistance. Apparently, this is common with ECMO. This meant another surgery to fix the pressure around his heart. You can imagine how this felt -- the last time we sent my baby off to cath lab, it was quickly followed by emergency surgery and a very long night of wondering if we would ever see him alive again.

The day today was one big contraction.

In surgery today, they found that there was some blood built up around Ewan's heart, and this was creating resistance. They also found that he was bleeding from one of the canulas inserted into the heart that is connected to the ECMO machine. These have been repaired now and his heart rate is in a beautiful place. His pressures are higher since they have to run the ECMO machine at a higher rate to prevent clotting so they can reinsert one of the catheters that came out (see what a terrible balancing act this all is?!). This pressure build-up could very well be at least part of the reason why today's first trial off of ECMO didn't go so well. We're hoping to target another possible reason tomorrow in the cath lab.

In cath lab, they're going in to see exactly how blood is flowing through the heart. Since Ewan is already on ECMO, there's not nearly the risk of him going in this time as there was the first time. While they're in there, they're going to do another trial off so they can see exactly where any hold-up may be: to see if there's any additional narrowing in the arteries. If there is, they can place little stents that will hold the arteries open and help them expand to allow for better blood flow. This could be something else that will help us get off of ECMO sooner.

ECMO is all well and good for a time, but it's very important to note that its usefulness is very limited and tends to decline over a short period of time (just a couple of weeks). Ewan has been doing fine on ECMO since his surgery, but the sooner we can safely get him off of this machine, the better. Using ECMO has its own inherent risks that shouldn't be sneezed at, including the formation of clots when the machine is slowed down (or when they wean him down), and the reaction of the body to the plastics used in the machine. Getting him off ECMO is Goal #1. It's keeping him alive now (thank you, Jesus!), but we cannot count on this for long. We need for his heart to be able to take over, and we need for enough blood to be moving through the arteries and going to the lungs.

So we're hoping and praying for the following things:

• That today's surgery and tomorrow's cath lab will ensure that Ewan has all the best chances of being able to move blood to the lungs.
• That we can get him safely off of ECMO as soon as possible.

I am hoping the contraction is easing for now. Today is drawing to a close and Ewan is resting safely for now. Tomorrow is another big day -- our doctors are very hopeful. As I head to sleep, I rest safely in their assurance, and the knowledge that we are loved, prayed for, and watched over. God bless baby Ewan, and all those who love and pray for him.

Aftershocks

It was last night at about 7 o'clock that some of the shock and chaos of the previous 48 hours began to wear off. It didn't surprise me when it came -- I knew that it would. I know that when our minds and bodies endure something like we did Thursday night - early Friday morning, that you can't possibly take it all in. You can't possibly understand and process what is happening.

I still believe that in those moments, I was protected by that peace that passes understanding. There is no doubt in my mind. But I also believe I have a human heart which, as much as it can contain, cannot contain the love I have for my son. This is part of why I share him with you -- this, and the understanding that is now as clear as a pinprick of light on a dark night: he isn't ours to begin with.

I thought about everything: How severe his heart condition is. How there was nothing we could have done to prevent it from happening. How so many people I know have had perfectly healthy little babies recently. How much my one-week old has been through in his first week of life: blood draws, transfusions, intubations, open-heart surgery, central lines, more medications running through his system than many of us have seen in our entire lifetimes. How much I love him. How much I want to hold him again, and for his daddy to hold him for the first time. How sweet and how fierce he is. How much I hope for those miraculous moments of victory, whether they come in inches or in miles. How much I understand that we're at the mercy of something over which we have no control. How much all of this throws into sharp relief how very delicate and tenuous life can be.

And I felt it all at once.

I understand that this doesn't mean a loss of hope or of faith -- in those scary moments where we thought we'd lose him, we had no choice but to live only in the moment we were in: no projecting forward, and no looking back wondering what could have been done differently. What I experienced was the dam giving way: the thing that kept us walking through the past 48 hours making those decisions that needed to be made with a clear mind. Now that things have been relatively boring for these most recent 48 hours, space was created for all those things to sink in, to marinate -- for me to have some stillness with them and to really, really feel them.

So for now, we are hoping and praying for more boring days. As Ewan's body hangs out at a warmer temperature (not quite body temp), as they slowly wean him off the support he's been getting from the ECMO machine -- we are hoping for nothing more than minor roadbumps. After you prayed, his lactic acid levels went down yesterday -- just as the doctors wanted them to. So keep praying that as his body warms, that as support is weaned, that he would handle it well -- his heart rate and blood pressure remaining stable and in healthy ranges, his body taking over for what machines are providing now.

So much to be thankful for, so much more to hope and pray for.

Video: I mentioned in an earlier post -- before we even knew that Ewan would be going in to surgery -- that I felt compelled to baptize him before we left the other night (which ended up being the night before his emergency surgery). I'm so glad we did -- I can't bear the thought of leaving that undone prior to those moments. These are BOTH the day prior to surgery.



And here's another video from the same day which is short but terribly sweet:

Day-by-Day

James and I got about 6-7 hours of uninterrupted sleep. No waiting for results. No emergent situations. No pagers going off in the middle of the night. Ewan continues to sail through these hours, floating on the prayers you're sending up for him.

To call us "thankful" is the hyperbole of understatement. After a nap and some lunch yesterday, we went to the in-hospital Starbucks. We walked outside to breathe in some fresh air and soak up some sunlight. It felt like we hadn't done that in years. I can't even begin to describe the gift it is to know your child is resting easy in the arms of Jesus and his angels, as well as some exceedingly compassionate and competent nurses and doctors. At a time like this, that's exactly what we need.

And so we went to the hospital chapel, fell on our knees, and gave humble thanks to God for the life of our son. About fifteen hours before that, no one was sure that he would make it. While we know that we are far from done with this fight, we have passed a major hurdle in this first surgery. Just a little over twenty-four hours ago, no one thought we'd be this far.

Thank you, thank you Jesus!!

And so we don't look to next week or even to tomorrow, but to each moment and day as it comes. Never have we been given such grace truly to be able to live in the present.

Medical updates:
Today is going to be an important day. After morning rounds at 8 am, the medical team is going to start warming Ewan back up. After as traumatic a surgery as he endured, it is common to keep these recovering little ones at lower than body temp (91 degrees F) to ward off any chance of fever and optimize the opportunity to heal. They will gradually start warming him up a bit and slowly weaning off the support he's getting from ECMO. This will also give them the opportunity to see how blood is moving through the shunt since ECMO bypasses that right now.

We're already seeing a lot of good signs: he's been moving his arms and legs a lot, his lungs are functioning as they should -- exchanging O2 and CO2 on their own, and his heart rate and BP are perfect. Please rejoice with us in this news, and continue to pray his poor little body through this. Our little fighter needs everyone behind him!!

When I went to pump and see him this morning, the nurses had him all cuddled up with a little monkey. He was moving around enough that they wanted to give him something to snuggle. Aside from being terribly cute, I couldn't help but think about how appropriate it was. Throughout my pregnancy, I referred to him as "my little monkey."

My little monkey is a snuggler and a fighter!!

Many thanks and much love to you, Team Ewan -- keep those fervent prayers coming!!

The Endless Night

I don't know where to begin. At most, I've slept maybe an hour or two out of the past 48. Those who follow on Facebook or Twitter know that we've had an impossibly long night: from cath lab to emergency surgery that for a time had us wondering if Ewan would see the morning. The long and the short of it is: we were preparing to say goodbye.

We knew an emergency surgery situation is already at a greatly elevated risk. The head surgeon said these are the smallest arteries he's ever seen that he dared to operate on. In other words: Ewan's case is as extreme as it gets.

First shunt didn't work. Second didn't work. If the third didn't work, there was no backup. Lots of bleeding. Low O2 levels. Even the most optimistic doctor saying things aren't looking good. Family called. Chaplain called.

Waiting, waiting, waiting.

We made it through the night, but we've still got a really long, long way to go. Questions remain about the reason for fluid accumulation in the belly, about possible brain damage from the lowered oxygen levels. ECMO -- the scary thing that I dreaded being necessary -- is keeping our son alive right now. Our Ewan continues to fight, but he still needs our help.

Please continue to pray for Ewan, and for all of us. I trust your prayers guided the hands of the surgeons and kept them awake for the long fight they had tonight. I trust your prayers gave me an unimaginable peace and trust in the hand of God in all of this.

Add him to your prayer chains. Pray for him at your Masses. Storm the gates of heaven with your prayers.

We still need to be realistic about this, but I am not a deist! I trust in a God who can move mountains -- the God of the impossible. One of the doctors said at this point, a full recovery would take "a lot of luck." I think we can do better than that. How about a miracle? I'm ready for one if you are.