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.

Shadows & Light

Thank goodness that is over.

We didn't pull it off without a hitch, but we did do it. With the help of movers, cleaners, and a generous set of parents and a good friend, we managed to get me out of the apartment, some things donated, and everything else into storage. There was no way I could have done all of that on my own. But even with all that help, there were plenty of times if I wondered if it would ever get done.

When I first moved to the Seattle area, I was moving for my job and therefore had the privilege of experiencing company-paid professional movers. Sharing a house with two roommates at the time, I didn't have a full household of goods, but I was still impressed that the two of them managed to pack up the goods of my entire life in about two hours and I never even lifted a finger. So needless to say, my expectations were high when these guys came in.

While the three movers were packing up various portions of my home and asking for directions, the donation truck I had solicited for a pick-up came, and they needed direction as well. I had them take the old TV, our bed, and the three boxes of books on the porch. In those ten or fifteen minutes, it was me and five strangers, all of whom were asking for where things were, or if they could use the bathroom. It was chaos.

It was only later that evening when everyone else was gone and the movers had been paid that I noticed the donation truck picked up something they shouldn't have. I had directed them to the porch for the three boxes of books. And there they were, three boxes of books stacked in their own corner of the porch. In an opposite corner, there was a plastic bin of our personal papers -- records we needed to keep. And they took those too. My phone call asking about them was never returned.

And then there was still plenty left in the apartment. There were things left that I wanted the time to sort through  myself, to decide if I would need them with me or if they were better off being stored for a time. I stopped by a few days after work the following week, thinking I could do a little at a time. I did do a little each day I was there, but there was still a lot left, which (again, thanks to the help of a good friend) was finally completed this past Saturday, all amidst trips to the bathroom to deal with nausea.

Then I got sick: not the nauseated pregnancy kind, but the I-got-a-cold-that-knocked-me-flat kind -- the kind that has you calling in sick for two days.

It would be wrong to say I've done any of this alone. I didn't pack and move alone, and I didn't get everything into storage on my own. Thanks be to God, I had a lot of help. James found the movers. My parents and my friends made sure I wasn't the only one left to pack and tidy up. I recognize all of this.

But there is something very alone-feeling about it. James is far away and I'm here, wrapping things up and being the one who is getting ready to say goodbye. And it all came tumbling in after the chaos died down: This has been home for me. This is where my family is and this is where I grew up. I have memories here, places I can point to and say, This is where we took that picture, or Remember how hard we laughed at the pier? I'm saying goodbye to co-workers and friends, to my family. I'm saying goodbye to the place where Ewan is buried. I'm saying goodbye to the friends who brought us food, or who did our grocery shopping and our laundry when it was too much after he died.

I am confident and hopeful that a beautiful life is waiting for us in Florida -- a life which wasn't going to be possible for us here. I know in my head it's the right thing, and a full heart propels me forward. But that doesn't mean goodbye is easy. Goodbye is and is going to be painful. And so it comes back to that beautiful and terrible tension again: in the one hand, the sorrow and the ache of goodbye, and in the other, the joy and the hope of a new life. Shadows and light: I hold both.

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!

When Things Keep Falling Apart

It's been a really, really long couple of weeks. I have had some incredibly long and action-packed days at work over the last several weeks and to say that I'm thankful it is now the weekend is an understatement. It's for this and a bevy of other reasons I've been social media silent lately.

We find ourselves in a season now where it seems like everything that matters to us is turning out completely other than we have hoped. It feels like just about everything is going completely wrong (translation: completely other than we had hoped), like every effort we make falls apart and crumbles into dust at our feet.

I had dared to hope that after we had faced the worst possible thing I could imagine (that being Ewan's death), there would be an upswing -- that we would see things go our way, that we'd find good things happening for us. And while life hasn't been all bad, it hasn't been all great either. For example:

We had high hopes that James would be interviewed for a local job that seemed ideal for him, one for which he was qualified, and had a referral on the inside -- but he didn't even get a chance for an interview. His resume was reviewed, but ultimately passed over.  

Without a full-time job, James has gotten back into trading options. We have seen great trades go wrong because of a normally very reliable and fast computer freezing up or shutting down altogether, and trades that would have had a significant return not even get filled by the broker. While on the whole, we've seen a net gain since trading options again, it's been a disappointing return on the whole -- not enough to maintain our expenses.   

Many of you know that we have interests in oil wells from when James was living and working in Kansas. In spite of the way the price of oil has shot through the roof lately, our return on that investment has not risen in proportion. The cost of living is going up for us here, but the amounts of these checks are going down.

We've gotten mail about disputed hospital bills (with no specific information about what is being disputed) sent in the name of our deceased son. Seeing Ewan's name printed on a piece of mail is like getting punched in the gut.  

Not even a full day after I found myself being incredibly thankful that at least I still had a good job, I  learned the company I work for got sold to another larger company. Nothing is changing in the immediate future, but my employment with this company beyond the next year or so is uncertain.  

Currently, we're being asked to renew our lease when we are not even certain if the events over the next few months will require moving out of state. If we stay, we pay an increased amount we really cannot afford. If we move, then we have to deal with everything that moving entails: finding a new place, paying all the upfront fees, finding the time and energy to do it. 

We recently found out that there is a bill about to go before Congress that may have the potential to hinder not James's chances of getting a job for which he recently interviewed -- but perhaps for keeping such a job if he did get it -- and this being one of our only employment options for him at this point.

It seems that everything we have dared to hope for lately has taken a turn in the opposite direction of our hope. It feels like we are living out our own version of the Book of Job, like after we were dealt the violent blow of Ewan's death, that we are still getting knocked down over and over again after we dare to let hope rise up again. I don't want to complain (believe me, I dislike whining as much as the next person), but I have to be honest: all of this really, really sucks.

I'm not stressed (after all this, I've gotten to a point where I seem to be unable to stress out about much of anything) and I'm not at the point where I'm giving up or losing hope. In spite of all the evidence, I still believe that God is good and taking care of us. But I am tired. My head is sore and my heart is weary. I'm frustrated and exhausted and sometimes, I feel as though I'm about to lose my mind.

I'm open to the possibility that all of this will lead us to a better place. We have done all we can do, and the circumstances we're contending with are broader circumstances that are entirely out of our control.

All I can do right now is put one foot in front of the other, breathe in and out, and do what I can do -- but there are days where even that seems to be more than I can deal with in any given moment. I need grace, grace, and more grace: to get up in the morning, to go to bed at night, and then to wake up and do it all again the next day.

On being proud

I'm really proud of Ewan.

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

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

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

I'm so very proud of him.

On being open again

You bet we want more.

Call us crazy, but we are still all for having a family. When I had my six-week checkup with my OB in November, she asked us what our plans were. She said that people who go through a loss like this may want time to process, while others want to launch straight back into babymaking. We were somewhere in between, wanting time for me to recover and heal physically, and also time to deal with things emotionally while not also contending with a torrent of hormone-induced vomiting episodes. But we also need to balance this with the reality that we're contending with the calendar: statistically, there may not be a lot of fertile years left.

It has been both good and necessary to take some time to grieve and not to worry about when we want to add to our family, but we are kidding ourselves if we think that this is a process that will ever reach some kind of finality, that we will ever wake up one morning and say, "Hey, I think we're done being sad about Ewan's death now. Let's start having some more children."

So as we approached nearer to the point where Ewan would have been six months old, in my mind, we were "trying." It only took two months of this to realize the "trying" mentality was an incredibly bad idea for me emotionally and psychologically. With "trying," a negative pregnancy test feels not just like a failure, but also a lot like loss for the child that "could have been". Honestly, I was obsessed. Tears and anger ensued when discovering that month's negative results. I could see and feel that this mentality was unhealthy, but I was so caught up with "trying" and felt like I couldn't let go of it even though I saw how it was harming me.

But I have let go of it. It was surprisingly easy once I recognized it for what it was. I've let go of "trying" and am embracing "being open" instead. This attitude of being open is how we found ourselves expecting Ewan, after all. I'm not going to cease in my efforts to ensure that my body is an optimally healthy environment for a baby, but I'm releasing the death-grip I had on the effort to achieve pregnancy within a certain timeframe. I'm going to enjoy the fact that I get to share life with an amazing husband and invite that love to bring more children our way.

Ewan taught me so much, and continues to teach me. Though unlikely, it is possible that what happened to Ewan could happen to another child of ours. We decided early on, however, that we weren't going to make our decisions from a place of fear, but rather from hope: hope that we could have a "normal" experience, hope that next time, we will have a child at home -- except after Ewan, normal wouldn't be normal at all. Normal would be extraordinary. Because of Ewan, to say I can appreciate that now is a terrible understatement.

When that day comes, there will be a lot of wondering, and a lot of waiting. Breath will be held until we can see and know (in as far as we can know) that that little beating heart is whole. And when that day comes, it will be worth it no matter what happens. For me, Ewan is proof enough of that.

Pieces

On Friday, it was five months since he died. Five months. The description of how much time has passed between that day and everything that came after seems rather arbitrary. If you told me it had been five minutes, or if you told me it had been nine years, I would have believed you either way.

On Friday, I looked at the pictures of him. I remembered his birth, his warmth, and his sweet new baby scent. I remembered stroking his hair, kissing his forehead, and nibbling on his toes. I remembered the way his skin changed when he died, turning dark and dusky as life gave way to death and I held the body that, just over two weeks prior, had been safely nestled in mine. I called my Mom from my office that day, voice cracking. I don't understand. I just don't get it. How did this happen?


And I fell apart again.

* * *

I get e-mails telling me about how Ewan's story inspired a positive change, a reconciliation. I hear about how he saved a life. These things are good and I never tire of hearing them, but there is bitter along with the sweet. These good things are born of his death and our loss.

* * *

We gave Ewan the middle name "Eliezer" after Abraham's servant in Genesis. In Chapter 24, Eliezer is sent on an urgent errand for his master Abraham: to find a wife for his son, Isaac. Eliezer journeys on camelback to Mesopotamia, to the city of Nahor where he found Rebekah, the one who would become Isaac's wife. The journey demonstrates profound faith and tremendous humility, qualities in Eliezer that we admired enough to give the same name to our son.

Eliezer's journey from the side of his master to the well where he found Rebekah was sixteen days. Sixteen days is also the length of Ewan's journey here on earth.

And as Eliezer was to depart Nahor to return to his master with Rebekah, he said: "Do not delay me. The LORD has made my mission successful. Now let me go back to my master." (Gen. 24:56)

And so he did. And so did Ewan.

Fully Alive

A couple of weeks ago, we returned from a beautiful and healing trip with good friends in Tennessee and in Florida. There's a picture James captured of me on the beach in Naples, Florida. The sun is setting in the background. I'm barefoot, the cuffs of my jeans rolled up. I had drawn a heart in the sand with my finger, the waves are rolling in, and I'm running away from them. Behind me, a bird in flight makes his way just above the water's surface.

When I posted it to Flickr, there was only one thing to say about it: It is good to feel alive again.

And it is. But I still have plenty of difficult days. There were baptisms at church this past weekend, and one of the mothers sat in the pew in front of me with her pink, round baby boy, smiling and beaming. I certainly did not begrudge her her happiness, as I knew that if I were the one bringing a child to the font that day, I would probably wear the same unmistakably happy expression, beams of light emanating from every pore. But seeing it was like a knife twisting in the gut, a reminder of one thing and all the others I had hoped for but didn't get to enjoy with Ewan. Holding both -- being happy for the mother who enjoys this day, but sad for myself and what we have lost -- is good for pushing a person to what feels like the outer edges of her sanity.

I cried through the whole thing.

And I thought of all the other days and nights like this one where it hurt to breathe and to wake, where I curled up in a ball on the bed, crumpled piles of used tissue accumulating on the floor. I thought of the night in the rocking chair where it felt like I might die of this sadness. I was alive then, too.

I look at that picture me on the beach and I can't help but remember how good it felt to feel the sun on my back and the sand between my toes and the damp ocean wind in my hair -- how good it was to embrace that moment and be present in it. What I realized is that I had already been in the practice of doing that before: taking in the reality that was present, and accepting it for whatever it was, wherever it was on that spectrum between misery and bliss. There was no excusing or dismissing it, no trying to put it off for later.

Grief and loss come for us all in one form or another sooner or later. No a single one of us chooses it, but I honestly believe we can make a choice in how we respond. We can sweep it under the rug, pretend like it never happened, like it doesn't faze us in the least, hoping we can hold our breath and duck our heads underwater until the storm passes. Or we can stare it in the face, welcome it, embrace it, because this is also what it means to be fully alive, to be one who loves.

And even though it might not feel like it at times, it won't last forever. There will be a day again where a smile crosses the lips unforced, where laughter rises in the chest with ease -- moments like I had on that beach. I really believe that the soul grows in its capacity for joy when it has also plumbed the depths of sorrow -- and there is no substitute for that. When I see that picture of myself on the beach, I remember that moment, and I remember what I've been through -- and I am amazed. Not all that long ago, that moment would have seemed impossible.

Learning to be

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

Naples, FL

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

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

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

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

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

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

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

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

A good place

If you were here now, you would see me breathing in deeply through my nostrils, my shoulders rising with the intake of breath. After this, you would hear a slow exhale and watch my shoulders sink back down again. If I were writing what this was, I suppose I would call it a sigh, though that word doesn't seem like quite the right fit. This deep breathing isn't about resignation or giving up. It is something like acceptance and a little like bracing myself. It's a little bit of residual relaxation from vacation, and a little bit getting ready to get back to the part of my life where I get up and go to work five days a week.

I'm still sorting through pictures of our vacation and recall how it seemed as though little pieces of my heart came back to life when I saw Grace twirling in the sun, when I looked at Impressionist paintings whose brushstrokes were completed over a century ago, when I sat at a table and curled my fingers around a mug of hot coffee and shared in conversation so good I took no thought for how tired I was. In the ultimate act of gluten-free defiance, I sliced through a stack of Swedish pancakes with my fork, chewing and swallowing like I meant it. I curled my toes in the sand, let an ocean breeze from the Gulf of Mexico tangle my hair, and got wet in the ocean. I laughed when the guys talked about the snakes and cried when I talked honestly about how it felt, what I feared, and wondered aloud if the future was just going to hold more of the same.

It feels like I got something I needed and left behind something I didn't. It feels as though I will be in some version of an in-between kind of place for a long time: neither freshly wounded nor fully healed, but in the broad expanse of landscape known as "healing." It's a difficult thing to accept that this is something that will, in all likelihood, never stop hurting and never stop being a question for me. I've said and acknowledged as much before, but I think I accept it more now. Between that and getting a little bit of life back, it seems like this is a good place to be.

Something healing this way comes ...

This trip has been healing in so many ways, and for reasons I can't totally identify in their particulars. Perhaps it's something to do with being out of my element, in a new place, spending concentrated amounts of time with good friends, and being surrounded by incredible amounts of beauty. Whatever it is, it feels as though I've left something heavy and hard behind that allows me to inhabit my reality with a greater awareness of the grace that already surrounds me, and with less of whatever it was that kept my soul from smiling again.

I knew I needed this.

Healing in Small Ways

Connecting with old friends, meeting new ones. Laughing. Staying up late, eyes watering with jaw cracking yawns, but can't go to sleep because the conversation is just that good, and it's been so long. Waking up to see a different slice of the sky than the one you've seen a hundred days in a row before this one. Feeling all through the body: this is so good.

The gospels tell stories of dramatic healing: the lame man who can suddenly walk, the man born blind who can see just a blink later, the lepers whose flesh is made whole. I've envied them, hoping vainly that  I will wake up one day and find that suddenly somehow, my heart does not feel like a balloon that has lost its ability to float.

The movement is so gradual that from one day to the next, it's difficult to notice the change and impossible to quantify: to find that on this day, my heart does not hurt so much as it did the day before, or the day before that. Is it because we are somewhere new that I've noticed?

Hmm.

I am someone who has survived something, and that means I don't expect that I will ever experience life in the ways I did before I was pregnant. I imagine the same thing is true of anyone who lives through a thing that they once expected would kill them: life never becomes again what it once was. It is an altered normal, a picture of the world that looks essentially the same, though captured through a completely different lens. And though this will always have at least a tinge of pain to it, I cannot convince myself that this is a bad thing. When you're someone who is healing in small ways, getting to this place is victory and perhaps, no less a miracle than the healing that happens in an instant.

Wondering Out Loud

"They tell me H. is happy now, they tell me she is at peace. What makes them so sure of this? ... why are they so sure that all anguish ends with death? More than half the Christian world, and millions in the East, believe otherwise. How do they know she is 'at rest?' Why should the separation (if nothing else) which so agonizes the lover who is left behind be painless to the lover who departs?"

C. S. Lewis, A Grief Observed

I've been wondering lately if he misses us. I was happy to read this passage in C. S. Lewis again and find that I wasn't the first grieving person to wonder this. I find myself asking if, even for the total absence of pain and brokenness in heaven (and the presence of God to boot), there is something of a sense of separation -- not imperfection, but like a marriage that has not been consummated yet. The vows have been spoken, the marriage declared, but it isn't complete until husband and wife come together as one flesh.

I haven't been wondering this because I want him to be anything but perfectly happy -- after all he went through in his barely sixteen days on earth, he deserves all the happiness he can get. But something about him skipping about in heaven without nary a care or a tear for where he came from and those left behind doesn't seem like quite the right picture either. It's hard to imagine what heaven might be like with an earthly mind and any wondering about I could put into words about heaven and separation wouldn't do it justice.

I'm not suggesting that heaven is anything other than a perfect place. I just wonder if there is some kind of sense there of what there is here, that sense of tension that tells us things are not as they should be. At least not yet.


A few notes:

James and I are heading out of town! We're leaving on a jet plane early tomorrow (1/20) to spend a week in Nashville and then a week in the Orlando area. We're going to spend time with some good friends and make the acquaintance of some new ones. I haven't been an every-day kind of blogger lately anyway, but I just wanted to let everyone know that if I'm even a little less present over the next couple of weeks, that is why. We get back on the evening of February 3, and then I will head back to work full time on February 10.

For Christmas gifts this year, I made a small book for family and friends that had selections from blog posts I had written throughout my pregnancy and Ewan's life (and after), as well as some of our favorite photos from the same period of time. I know that though many of you never got to meet him, you loved Ewan too. So if you would like one, the book is now available for you to order through Blurb.com. We aren't making any kind of money from this -- we just wanted to make it available to those who would like a memento of Ewan's life.

sixteen days: the life of ewan eliezer by Kirsten Petermann | Make Your Own Book

And for those of you wondering, I am working on writing a book about all of this. I just have part of an introduction and a rough outline so far, but I'm plugging away at it. I continue to maintain that Ewan is too good not to share, and I'm hopeful that his broken heart will continue to heal others for years to come.

Now I guess I had better get packing!

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.

The Rainbow

I never did write about Ewan's funeral. If the night of his emergency surgery was the longest night of my life, then this was most certainly the longest day. I drifted in and out of surreality, between wondering if this could really be happening, and the kind of sadness that had me making fists and considering taking my fingernails to my eyeballs. In and out, back and forth. By the end of the day, I was exhausted.

It rained all day the day of his funeral. Appropriate, I thought. I probably would have been offended had God permitted the sun to shine and the birds to chirp outside my window. I've endured a lot, but that would have been too much.

All morning long and all through the funeral, all through the graveside service in Seattle, it rained. It rained on me as I reached to touch his casket in the hearse, and rain splashed up against my bare ankles as I walked from the car to the graveside. Rain everywhere.

We buried him, and then we drove home. Family and close friends joined us at our apartment afterward.

I changed into my pajamas, just wanting to be warm and comfortable. As my brother and sister-in-law and a good friend of mine were out procuring food and wine for everyone there, my sister-in-law texted me.

There's a rainbow!

What?

There's a rainbow! A rainbow for Ewan, she said. She sent me pictures.

I slipped on some shoes and ran outside. Sure enough, after all that rain, enough sunlight was breaking through to make bright multi-colored beams of light across the sky.

Whenever I see one, I always think of what the first one meant: a promise never to destroy the earth with a flood again. A promise. A promise that went deeper than a mere symbol, a promise that meant life again.

Before I go on, I just have to say (and if you've been reading here for any length of time now, you have probably already perceived this) that I am not a terribly sentimental person. What I mean by that is that I don't care for cutesy explanations for hard things, that I don't like to hear things that are truly ugly made to sound pretty. Don't tell me that Ewan died because "God needed another little angel in heaven." (For the record, no one said that to me; I'm just using it as an example). Don't sugarcoat it, just give me the truth straight. No fluff.

I say all that because what I'm about to say might sound overly sentimental. It might sound like something cute someone would say just to make me feel better. But I saw that rainbow and I thought: a promise. A promise for me, a promise for us that life won't mow us down like this again. I know there will be plenty of difficulties, but maybe, just maybe I thought ... I won't have to bury a child of my womb ever again.

I dare to hope that it is true.

The Possible

We're all mothers here, right?

It was as if a golf ball formed in my throat. At a table of eight women, only one other seated there knew me, knew about Ewan. I placed my hand over my mouth and clenched my eyes shut. I wondered if I should have come. This was my first social outing since Ewan's death and me bursting into tears and running out of the room was most decidedly not how I wanted it to go.

As conversation around the table resumed, I took a few deep breaths and concentrated on the salad in front of me.

I needed to stick this out. I needed to learn how to do this. I was determined not to allow grief to turn me into a recluse.

Earlier that day, I had spent a lot of time in Ewan's room. I can't say if anything in particular drew me there, but there was some tidying up I had long wanted to do and then seemed as good a time as any to do it. I dusted and rearranged, I re-folded clothing and diapers, I wiped down hard surfaces. As I handled the clothes he never wore, and looked at the bulletin boards on the wall that held some photographs, ribbons from baby gifts, and cards full of well wishes, I felt grateful. A deep peace settled into my body and thankfulness filled me.

And here I was now, feeling sad and awkward, emotionally volatile and flighty, wondering how to make conversation with a table full of women I didn't know. My extroverted tendencies had abandoned me utterly. It felt as though I had to relearn how to conduct myself in social situations. I nodded and smiled when conversation pointed my direction, saying as little as possible.

And what about you?

Conversation up until that point had been about their children, and now it was my turn.

My son died two months ago, I said. The words tumbled out of me so indelicately. 

I saw the faces around me change as I told them about Ewan, our time in the hospital, about the roller coaster of everything. I pulled out my husband's phone and showed them a few short videos of Ewan, both before and after his surgery.

It felt good to be invited to talk about him, to share pictures, to shed a few tears with those around me.

And then I learned I wasn't alone. Right there at that same table were one whose son had died more than 20 weeks into the pregnancy, and another whose son was stillborn at full term. There at a table of eight women, three of us had experienced the death of a child. It had been some years for both of them.

I didn't have to struggle with finding the right words to tell them how difficult this time is, because they already knew. They had experienced some of the same cycles of good days and bad, of shock and numbness. They knew what it was to feel emotionally volatile and had experienced the unpredictable and wide ranges of emotion in a single day. They had used some similar coping mechanisms that they feared would make other people think they were crazy. They understood how difficult a night like this could be.

I saw in them something I already knew to expect: you never "get over" it, but you do learn to live with it and to find a new normal. And it might take awhile. I got a glimpse of the life that is possible beyond the rawest of moments: one lived with compassion, one where yesterday's pain leads today's grace and strength.

Surrender

"...emotions like anger or self-pity, however natural and legitimate, do not define reality. Our feelings do not determine what is real, though the feelings themselves are real. We cannot ignore these feelings, but neither should we indulge them. Instead, we should acknowledge them without treating them as if they were ultimate truth. The feeling self is not the center of reality. God is the center of reality. To surrender to God, however contrary to our emotions, will lead to liberation from self and will open us to a world that is much bigger and grander than we are."

A Grace Disguised, Jerry Sittser

Surrender. I've thought about that word a lot lately. Sometimes I picture a battlefield, smoke thick and hanging low, the crackle of gunfire reverberating long after the fighting has ceased. As the smoke clears, someone raises a white flag, waving it tentatively. This is the sign of surrender, of granting victory to the opponent.

Sometimes I simply picture open hands, the context of surrender not always being combative. In this way, it is acceptance of the way things are, a relinquishment of the insistence on having things my own way. It's feeling all the emotions, accepting them, understanding them and living with them in such a way that they do not dictate reality. This is hard work. It is exhausting. And it is anything but simple.

As time marches on, the losses compound. No Thanksgiving, no Christmas shopping for Ewan. More babies being born, more pregnancies announced. All the simple unspoken hopes I had as a mother -- imagining family photos, rocking my baby, reading to him, bathing him, seeing him smile and hearing him laugh -- continue to rise to the surface, and each must be acknowledged and for now, buried again. I get angry, and sadness is my constant companion (even in those times when I smile and laugh). 

It feels like just about everyone but me are having healthy babies. It seems like so many others are enjoying with relative ease the life that I fought for, but lost. God makes healthy babies all the time, and yet He gave me one that was too sick to live. It feels sometimes like God forgot about me, or wants to watch me writhe in agony.

This is not reality. These feelings are not the truth. Surrender, again and again.

The truth is I am not the first to have suffered such a loss, or to feel so singled out in what I grieve. The truth is I am not being punished, and neither was Ewan. The truth is, when it comes to suffering and loss and grief, Christ went there first.

Perhaps this is part of why grief is so exhausting: the emotion speaks so loudly and convincingly, begging to be heard, and sometimes goes so far as to call the truth into question. The truth has not changed, but the world seems so upside-down at times that it's tempting to think that it has. It is a constant tension of acknowledging the feelings and checking them against what I know to be true. And so surrender is hearing the feelings, and then acknowledging and affirming the truth, over and over again, no matter what my feelings have to say.

In due time, I hope to experience that liberation Sittser speaks of, of seeing a world that is grander and bigger than I am, bigger and grander than I ever knew. Instead of being trapped and embittered by the loss, I hope with God's grace that I will let it transform me.

And so I learn to surrender, again and again.

Thankfulness

Words are hard to come by today. Thanksgiving is here, kicking off the holidays and with it, family get-togethers where it will be all too apparent who is not there.

a grateful mama

Several friends and acquaintances have either had babies recently or announced pregnancies. Seeing or hearing these announcements was not difficult for me at first, when shock protected me from the worst of the pain. But that has changed. I want to be happy for every one of them, I genuinely do. And it's not the case that I wish any of them anything but healthy, uneventful pregnancies and perfect little babies.

It's not even the case that their joy reminds me of what I've lost. I haven't forgotten.

But the good news prods at an open wound that is slow to heal, poking at particular nerves that cry out with the pain of what we have lost each time I hear of or see someone else's joy.

From what I know of grief, it isn't something to be gotten over. It is a burden the grieved learn to assimilate, to absorb into who they are, and the carrying gets easier not with time, but with practice. And so I am practicing. I am resigned to the fact that there always be a part of me weeping over a small plot of earth where a little body -- one who had left mine just three weeks prior -- was buried.

I will always be sad that he's gone. But today, instead of focusing on the fact that he died, I choose to focus on being grateful that he was here. I am thankful for the boy who was nothing like I expected, but everything I wanted; who was as tender as he was fierce, who loved as hard as he fought.

What are you thankful for today?

How He Changed Me

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

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

I want to learn to love other people that way.

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

This is an ability I want to retain.

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

I don't want to lose this.

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

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

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

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

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

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

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

Remembering

The first of November is the Feast of All Saints in the Catholic tradition, and the month of November is set aside for the purpose of remembering the dead. In the hall of our parish just before you enter the worship area, a banner hangs with the names of those in our parish who have died in the past year.

Click on image to view larger

Ewan's is the last name listed.

Ewan never saw the inside of that church. But as a baptized person who never committed any sin, we know he sees and enjoys something we can only imagine: the glory of God, the beatific vision itself. And as saint, now he can pray for us. It boggles my mind.

As his mother, I couldn't wish anything better for him. As for me, I must slog on, aiming always for the eternity my son now enjoys.

Sweet Ewan, pray for us.