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.

Christmas

I did my best not to put any expectations on it: if it wasn't going to be difficult, I didn't want to make it so by my expectations that it would be. I just wanted to "go with the flow" as it were, to see how I felt and when, to see if there was anything in particular that gave rise to feelings of sadness, guardedness, anger. I wanted to see if laughter and smiles rose to the surface without being forced. I wanted to be open to whatever emotion I experienced.

The most difficult moments for me came during church services. I felt neither comforted, nor joyful. Most of the time, I crossed my arms defensively as if to protect myself. My lower lip quivered, and my throat tightened to prevent any telltale sobs from escaping. Anything resembling joy eluded me.

In Christmases past, I could join the choruses of joy and hope with such a full heart. And it really was joy: it wasn't just the experience of happiness or beauty, but something deeper and more profound. It was the recognition that at the perfect time, Jesus came to meet our very real need. But this year, all the talk of angels hailing Jesus' birth, the repeated mentions of a firstborn son, and all the proclamations of joy to the world offered too stark a contrast to what I've been feeling lately. I wanted to put up a shield to deflect the joy, joy that was being sung all around my broken heart.

In my world, the proximity of death makes it difficult to experience the joy proclaimed by the Christmas hymns. Joy seems to be the upward movement of a human soul when after a host of wrongs, something -- for once -- goes right. A lack is filled. A deep need is met. After centuries of slavery and oppression and darkness, a redeemer comes -- just as He promised.

Right now, everything feels wrong: the loss of Ewan, the incessant lack of job opportunities for James (for nearly two years now), the consequent pressure that puts on us both as individuals and as a couple. The list could go on and on. But it occurred to me that the sorrow we experience now is priming us for a joy that is coming. The beauty of this is twofold: I don't have to pretend that it all isn't just plain awful right now. Because it is! I don't have to act like I feel better than I do, or that things are better than they are. And secondly, something better is coming. It may be in this life, but I don't bank on that. Definitely in the next. Someday.

I find myself thinking of "someday" quite a bit lately. I will be honest: I hate the idea of someday, as in "someday it will be better," or "someday it won't hurt this much." As true as that may be, it points to a rather nebulous and undefined point in the future when things are better. Sadly, this does nothing to help me with today. In deferring to "someday", it is almost as if I'm being asked to hang my heart in the future while dealing with all the harsh realities of the present. It's asking myself to pretend today for a sake of an imagined tomorrow that hasn't happened yet.

And as much as I want to throw off this burden of sadness, as much as I wish sometimes that I really could just snap out of it, I can't do it. It doesn't work. There is no detour, there is no quick fix, there is no truth, however brilliantly phrased, that will make this all better. Today must be got through, and then the next day, and then the next -- moment by moment is the only way to make it through.

Even if it doesn't particularly help today, it is still good to know that someday is somewhere out there waiting for us. I don't know when it will get here, or what it will look like. What I do know is that when joy comes, we will be ready.

Relentless Internal Dialogue

Sometimes I feel like I've been plopped in the middle of a large windowless room with piles of mess all around me: things of different colors, shapes, and sizes; paper, boxes, toys, framed photos, string, blankets, old bills. Piles and piles of them. There is no order, only chaos. Before the door is shut, I'm told by a stern-looking woman with dark-rimmed glasses hanging halfway off her nose: Organize this! And don't come out until you do.

Self-portrait: February 2010

Where do I begin? I look around me and can't even think of how to find anything resembling order or peace in a space as frazzled as me.

Ewan's death precipitated for me what is turning out to be one of the most introspective periods of my life. I have always, as far back as I can remember, been an introspective person: aware of my thoughts and feelings, aware of many of my faults and shortcomings, aware of my own hangups and peeves. But now it's as if my whole skin has been turned inside out. Everything is exposed, everything is incredibly tender to the touch, and I see so many things at once, I wonder where and how in the world to begin. Could all these revelations please line up in single file?

Here is one single thread in the tangle of threads inside my brain:

Sometimes I feel like I can't see past the end of my own nose. Is this selfishness, or a natural by-product of woundedness -- or some complicated mixture of the two? I know I need to focus on healing, and I know that if I don't grieve Ewan now that it's going to come back to bite me one day. There is no avoiding feeling hurt. I feel that's what this time needs to be for.

And then I feel terribly when I really want to be happy for someone who just found out they were pregnant or who just brought their new baby home, but what I feel is hurt. Bitter, sometimes. Envious. Their joy always points to my loss. I hate that when they are celebrating, all I can think about is what I've lost. Why do my thoughts always turn to myself again in those moments?

And then I wonder if I should back off of social media for awhile -- avoid the constant and rabid influx of news and updates, drop off the radar for a bit until I find I've regained some equilibrium, some homeostasis and balance. People who go through major surgeries or who are recovering from serious injuries take time for healing and rehabilitation. They aren't expected to be up and at 'em, running hurdles and bench-pressing ten-year-olds two weeks after a physically traumatic event. Maybe the grieving need to have some equivalent of that in order to move through the world again without falling apart like a soggy tissue.

We did keep to ourselves for a bit: took a several days just spending time with each other before we went "out there" again. But I felt like I needed to do it -- I was going to have to see babies and interact with people I didn't know again eventually. I was going to have to figure out what to say when people ask me if I have any children, and how to handle it when I saw a baby boy dressed in one of the same outfits we had for Ewan. I'm glad I did it, because then I knew for sure when something was a sore spot, and what wasn't. And I learned also that those things hardly ever remain in the same category. One day I might coo and smile at a cute baby, and the next I might get away as quickly as I could, thinking get me out of here, get me out of here, all the while trying not to put on a serious display of hysterics.

And then I wonder if I'm just thinking about this all too much -- if I just need to learn to gauge moment by moment and day by day what feels right and helpful. Perhaps I'm too worried about overcoming those post-traumatic hurdles too soon, and am not concerning myself enough with doing whatever it is I need to do (or not doing whatever it is I need to avoid) so I can rest and heal, and in due time, regain some strength -- and not exacerbate the injury and consequently, put myself in an even worse spot.

Yes, that sounds about right. Test my strength, but don't expect too much too soon. Learn where my weaknesses lie and try not to lash out like a wounded animal when those places are exposed. Rest when I need it. Cry when I need it. Stay away from those things that feel harmful, but recognize that pain is part of any recovery. Do those things that might not make empirical sense or that might sound downright crazy -- like cleaning his room, washing and folding his clothes -- but that feel good and helpful to do.

I also have to remember that pregnancy and birth and the post-partum period are all very physically taxing things. Many powerful hormones are involved, as well as several substantial physical changes. I can't expect to snap back like a rubber band physically or emotionally. Would I expect so much of a friend who had gone through the same thing? Would I tell her she just needed to snap out of it, get over it, get past it, and pick herself up by her bootstraps? No? Then why do I seem to be demanding that much more of myself? Truth is, I'm really not in a great position right now to be trying to extend myself and help out in a lot of places. This is not a time to be a hero. Sure, I have moments here and there where I can help out, but on the whole wouldn't the world and I be better served if I just took it easy for a bit?

But but but ...

And then as if hands are raised in a "stop" position to calm the din, I hear from somewhere outside me: Hush. Breathe deep, breathe deep. Go gently, my soul. Go gently.

Because it All Happened So Quickly

Before Ewan was born, I had a decent grasp on time. I ticked off my pregnancy in weeks and halves of weeks. I counted down the hours of each working day, enjoyed each day in the weekend, and longed for several extra minutes of sleep each morning. But those measurements mean little to me now. Time is all messed up. Measurements of time have diminished relevance. It has become difficult to distinguish an hour from a minute from a week.

Remembering: I was there.

As a first-time mom, I expected to go late into my pregnancy. I honestly believed Ewan would stay content in my belly until 41 weeks or so. But then he came a bit early, shortly after my pregnancy had just passed the 37-week mark at which I was considered term. He did things in his own time, just as we expected. The same with his emergency surgery. While in the cath lab for a routine procedure, things deteriorated to the point where he needed surgery immediately. There would not be the benefit of a predetermined plan developed between surgeons and cardiologists. And so came the long night I will never forget: increasingly hopeless updates and then ... he was out of surgery and alive. He was on ECMO, but all things considered, doing okay.

Every day in the hospital with Ewan was one in which we were discussing with doctors and surgeons options for treatment. Every day we were making decisions that had to do -- quite literally -- with life or death. There were multiple victories and multiple setbacks. We rode the roller coaster that is well known to any parent that has a child in the ICU. We went into every day deprived of sleep. We went into every day knowing it would be intense and demanding.

And then came the day we knew we needed to let him go. Another long night, but one marked by peace and the love of family and caregivers. We went at our own pace. For once, we were able to take the time we wanted. There was no rush.

Ewan died on October 4 -- a full day before his due date. I had been so fixated on going a week past the due date and he was gone before it.

We were there. We saw it happen. We planned the funeral, saw his body in the casket. We were there when it was lowered into the ground. I watched as James and his dad and mine each shoveled dirt into the hole where he was buried. I put the spray of flowers from his casket on top of the grave when they were done. I kept telling myself: This is real, this is really happening.

But there have been so many times over the past three weeks where none of it has felt the least bit real. There is something about the experience that has all the qualities of a very vivid and terrible dream. Were it not for the pictures we took and the dark line that still goes down the center of my belly, there might be times in which I could convince myself that it didn't really happen at all. It could be shock or a side-effect of the grief, or a product of the intensity and pace at which everything happened.

It is so strange, this knowing and not-knowing, these moments of intense awareness and moments of feeling like we are each waking up from a shared nightmare. I look at the calendar and consider what each one of those boxes represent. Each day checked off the calendar means something different here in our apartment than it did in the hallways of the hospital. The notion of "one day at a time" held no meaning for us when we had learned to hang on to minutes. And now days pass in which the minutes pass (for the most part) uneventfully.

What is a minute (or an hour, or a week) anyway? I'm sure I don't know anymore.

Room to Breathe

It feels like we don't really have any (breathing room, that is). We don't have the luxury of a lot of time, or of waiting until we feel rested and rejuvenated and before we make any big decisions. We do have a lot though: we are well-loved and supported, and we both know we are empowered and graced to make the best decisions for our family even in a time as impossible-feeling as this.

I'm simply astounded by all the messages of love and support we've been getting. I'm getting e-mails from all over the country and the world -- from people who are local and people who live across oceans. From people who have added our family to the prayer chains at their churches and organized prayer groups focused on prayer for our family on a daily basis. I see these messages and I comprehend them, but I just can't take it all in right now -- it can't quite sink in. I'm astounded and humbled at how many people love this child, who are pulling for him, and want the best for him. One day, I know it will hit me. And it will be too much in a good way.

I wish I could get back to you all. In the absence of my ability to do that, please know that I read every single e-mail and every single comment. They are getting to me, to us. I want you to know how much we cherish that, even if we aren't able to express that to you directly.

As we reach a critical point in our decision making for Ewan's care, we will be pulling away a bit from regular updates and social media in general. We will still be receiving messages if you want to send them, but for now our energy needs to be focused on the needs of our little boy. We just need that little bit of extra room to breathe.

I was so thankful that our priest could come tonight -- to talk with us, to pray with us, and to anoint Ewan. There was something very comforting and heartachingly beautiful about the whole thing. I've always known Ewan belonged to God first and that even in the best of circumstances, the children we bear are never really ours to begin with. What I saw and experienced tonight reminded me of that in a very poignant way that both pierced my heart and comforted it.

It reminded me of this: that even if the number of Ewan's earthly days is shorter than we would like it to be, that's not the end of the story. Not even close.

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.

Blood Pressure

I had one of my weekly prenatal visits today. Not surprisingly, my blood pressure has been steadily climbing the last few visits. I'm fairly convinced that it's within normal ranges when I don't have an appointment. We totally love our doctor -- I talked about the stress of me being the only one working, trying to figure out the financial end of things while I'm leave, being turned down for financial assistance (another story for another time, perhaps), getting closer to facing the unknown about what it will be like with Ewan and his heart once he's here -- we are certainly dealing with an above-average amount of stress.

Until that 20-week ultrasound (and even in my final two visits with the midwives, after we found out about Ewan's heart), my blood pressure was in very healthy and normal ranges -- just like it's always been (I classically fall within a few points of 105/65 or so). Ever since then, every appointment sees numbers that have been steadily climbing and today's numbers were the scariest yet. I'm not surprised, but wish I could convince those subconscious parts of myself that are in charge of these kinds of physiological responses that it's all going to work out and that there is no reason to stress.

A friend reminded me today of leaving my burdens at the cross. I wish I knew how to do that. I know the verse about casting your cares on Him, about giving up your heavy yoke, about how worry profits us nothing, and about how we can't change anything by worrying about it -- when it comes right down to it, I guess I don't know what all that really means -- how it looks in real life to do that. I can say it, I can pray it -- but how do I actually live it? How do I still deal with the things that need to be dealt with (especially those things that I cannot delegate to another), but not worry about them -- especially when we keep running into brick walls with so many of the options we explore? They all seem to be rolled up into one big, hot and tangled mess for me. I don't know how to untangle it so that I'm not carrying a big burden of worry, but also not Pollyanna-ing my way through it -- burying my head in the sand and denying reality. I want to be able to do just that and have been praying toward that end, but it has yet to bear itself out in my day-to-day reality.

So, I'm on blood pressure medication now -- humbling for the woman who's always had a BP in a very healthy and athletic range. We have a non-stress test (NST) scheduled for Friday to see how Ewan is handling it once I'm on the BP medication for a few days. And blood was taken today so they could test for anything that would point to pre-eclampsia (which, thank God, there are no other symptoms pointing to this -- just the BP). I have a very good and very understanding doctor, but we all agreed that it is going to be best to eliminate the element of surprise where we can so we can all know exactly what we're dealing with.

She was very reassuring, telling me I know I can tell you not to stress about this -- that it will all work out and that in the end, you're going to take home a happy and healthy baby. I can tell you that all of this will be worth it. It's so easy to know it here (pointing to her head), but in real life, it's hard to know it here (pointing to her heart).

Ain't that the truth?! (See why we love her?)

In other news, Ewan is still doing really well in utero. He's moving quite a lot (seriously, my belly has looked like a cartoon lately with all the feet, elbows, knees, and fists sticking out of it) and his heart rate is quite healthy in the 150s. I'm technically full-term now at 37 weeks, but he hasn't dropped yet, so it will still be some time before we see any action in that regard (thank goodness, I say). I'm glad he's as strong and resilient as he is, and am thankful for the continual (and not subtle!) movement that reassures me he's doing just fine in there.

I can completely understand why my stress level is the way it is, and why my blood pressure goes to the levels it does when I'm at the doctor. Though I wish it were different, I have to be a little bit nice toward myself in that regard too -- it would be hard for anybody to go through something like this and not see the effects of it manifest themselves in this or in other ways on their overall health. I wish I could control those things, but it's just another area where I feel so entirely powerless to change anything. I want to do better by Ewan because I know he deserves it (and really, most of the time I don't feel as hypertensive as I do when I go to the doctor lately), but the last thing I need is to pile more on to the burden that for now, I don't quite know how to cast down.