Showing posts with label inspiration. Show all posts
Showing posts with label inspiration. Show all posts

07 March 2011

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.

09 October 2010

Ewan's Eulogy

There are many things that seem wrong about today. Someone who was just born three weeks ago shouldn’t need to be eulogized. Caskets shouldn’t come in a twenty-four inch length.

But here we are.

When we first found out we were expecting a baby, I took for granted that the experience of preparing for and welcoming our first child would be like those of others we knew: getting a nursery ready, picking out names. Installing the car seat, assembling the crib, coming home as a family for the first time. But our experience became something entirely different when we found out we were expecting Ewan with a broken heart. From that point on, everything about our experience was entirely other.

But it taught me to cherish and celebrate every moment. One of the ways I did this throughout my pregnancy, and at least once after his birth, was that I wrote letters to Ewan. And so for my eulogy today, I have another letter for him.

3 October 2010

* * *

Dear Ewan,

There are a lot of difficult things about this day. I don’t know how to explain to myself – let alone anyone else – how it is that the sun keeps shining, the birds still sing, and the earth manages to continue rotating when a loss as shattering as this one occurs. It seems that all creation should stop to pay its respects to your passing, give us all a moment to weep and then to catch our breath. It seems that the sky should go black and the earth rip open with a loud groan. Since you left us, I feel as though the fog has rolled in and wrapped itself around me.

It’s not often that I struggle to find words. But since we said goodbye to you late Sunday night, I can never seem to find the right ones. There are words like: sad, grieving, angry, upset, confused, and lost. There is a rightness about them, but as words, they are far too small for this. They aren’t nearly infinite enough.

It was late in January that we found out you were coming to us. Since the moment I saw the first positive pregnancy test, I held close to myself the knowledge you were with me. Long before I could see you or feel you, I wondered at who you were. I remember hearing your heart beat for the first time. I remember sitting at work and feeling the first little flutters inside that were evidence of your life. I remember the day we found out about your broken heart.

Before we knew what was wrong, it was clear to us the doctors weren’t seeing what they wanted to see. And then they told us about your heart. We were flooded with information and suggestions about how to handle it. Instead of “baby,” they called you “the fetus” and used phrases like “terminating the pregnancy.” My instinct was to protect you, to fight for you. I felt like leaping from the table and ripping the words from their mouths.

In the days that followed, we wept for you. We wept for the fight you had ahead of you, for the unique challenges you would face, for the unfairness of it all. The knowledge of your broken heart heightened my appreciation for everything I experienced: every kick and movement, the increasing roundness of my belly, and even the sickness I felt – it was all celebrated, it was all treasured. Not a moment went by that we didn’t rejoice over these signs of life in you.

I told everyone I could about you and your heart. Once upon a time, I would have been embarrassed about doing such a thing. I would hate to take up people’s time or inconvenience them or make them feel uncomfortable. But I felt like everyone had to know about you. And so before you were even born, I set up a blog all about you. And pretty soon, hundreds of perfect strangers from all over the world had joined us in praying for you, in cheering you to victory – and the same people began to love you as we did.

Your personality was evident very early on. It was so clear you were determined to stay nuzzled up against the right side of my belly. When you stretched there, I looked particularly lopsided. This gave many people (including me) a good laugh. One friend suggested that she thought you’d be a little snuggler, and I liked the sounds of that. It was clear to us also that you had no small amount of fight in you. I will never forget the morning that I lay in bed in that space between asleep and awake and you woke me, kicking hard with both feet rhythmically and repeatedly like a snare drum. I remember watching my belly as you got bigger – you entertained us all by showing us your feet, your knees, and your elbows, rolling and squirming all the while, sometimes for hours at a time. I would always stop what I was doing when you moved around like that. It comforted me to feel you, to know how active you were, to know you were alive and thriving.

We tried to do all the normal things that people do when getting ready for a baby: we registered for gifts, bought clothes for you, got a nursery ready. We knew your condition was severe, but we were deliberately hopeful. We talked about things we wanted to do with you, things we could do as a family, things we wanted to teach you. We painted your room, made your bed, set up a changing table. We were ready to welcome you.

Two nights before you were born, I couldn’t sleep. I knew your arrival was close, and I was grieving again for what you would have to face – how scared I was for you, how innocent you were and how I hated what you would have to suffer just to remain alive. I knew that as long as you were growing inside me, you were safe. I could protect you. I couldn’t stop thinking about how I would have offered you my own heart if I could. We always wanted only you Ewan, but we grieved for that broken heart. Nothing about it was fair, and I cried for the injustice of it all. All I wanted was to bring you home, to be your mother, and to love you.

Over the course of my pregnancy, I would hear other mothers make minor complaints about parenthood: the screaming in the middle of the night, diaper mishaps, fatigue, spit-up, and the like. I hated hearing it. I wondered if they knew how fortunate they were to have that. I hated it when people who didn’t know any better said things like, “You must be so ready to be done,” not realizing I would have stayed pregnant forever if I could.

And then you came. I was so certain I’d go past my due date, but you came just over two weeks ahead of it, doing things your own way just as we knew you would. There was no time to be afraid, only to focus on bringing you here as safely as possible. And so I labored through the night and into the early hours of the morning. Just before 10 am on September 18, they placed you on my chest. You didn’t wail as I expected – you simply mouthed gentle cries as if to say, “It’s too bright out here.” Knowing our time together like this would be short, I studied your face and touched every bit of you that I could. I will never forget how you looked at me, how your eyes focused on mine. I knew you, and in that moment, I was certain you knew me. You were every kind of beautiful. It was so good to see you, and impossible to comprehend how there could be anything wrong with you.

And then they took you away.

That was the only time I would see you without the permission of nurses, without slathering my hands in Purell, without oxygen tubes and probes and monitors beeping. Later that day when I finally got to see you again, you looked at me as you had before. You held my finger and I talked to you. I sang the same songs that I sang when I was pregnant with you. I put my hand on your chest. I studied the feel of your skin and your hair. I adored your little dimpled chin. I didn’t want to leave you.

It’s difficult to recall the next two weeks, not because I can’t remember them clearly, but because we had so much hope for you and had to watch you suffer with repeated tests and procedures that no little one should have to endure. It was clear to us and your nurses that you were both tender and fierce. I remember watching as different procedures were performed, how you held the ultrasound tech’s ring and pinkie fingers as she performed an echo of your heart. I remember seeing how angry you got when they put the CPAP on you – how you straightened your arms and stiffened your legs and screamed. I cried for the rest of the day. I wanted so much to take it all from you, to make it all stop. I felt so helpless, and I kept apologizing to you.

At some point, I determined that the time I spent with you in the hospital was time I was going to focus on simply being your mother. Nurses and doctors were plenty, but I was the only mama you had. I spent every moment by your bed stroking your hair, touching your hands, talking to you, singing to you. The day before we said goodbye, you looked at me like you always did – with your intensely soulful, piercing gaze. You moved your mouth as if you were trying to say something. Oh, how I adored you. I soaked in every second that your eyes were locked with mine. You were impossible to leave.

When we went to your room the next day, the doctor updated us on your condition. On top of the heart and lung machine, and the kidney support machine, we learned you had acquired a serious infection in your blood. Your intestines were failing. You hadn’t opened your eyes all day. You no longer responded when touched. As hard as you fought, your body was failing you.

We called family and close friends. We told them it was time to say goodbye. If you had to leave us, we wanted you to be surrounded by those who loved you and had cheered you on. There would be no middle of the night phone call saying you were gone. We would be the ones surrounding you and loving you, free of machines and tubes and wires and tape. And so we took several hours and held you, sang to you, prayed over you. I got an unobstructed view of your face for the first time since your birth. And then when we were as ready as we could be, the final machine was shut off. It was within minutes that you left us. You came into this world in my arms, and that’s exactly how you left, too.

Though you never spoke a word and never left the hospital, you changed the world forever. You had a tiny, broken body and such a magnificent soul. I’ve gotten hundreds of messages from all over the world – from people I’ve never met or known – about you, Ewan. I hear from perfect strangers about how your broken heart somehow managed to soften and heal theirs. Mothers tell me about their determination to hold their children longer and tighter, to be more patient and loving with their little ones because of you. People tell me about how you taught them to be grateful, even for the things that cause them pain. I hear them tell me how they didn’t know what it was in particular about you, but they grieved with us as deeply as if they had lost a child of their own. I hear people tell me they found their faith in God again because of you. You, dear Ewan, shone brightly in a very dark place.

Dear Ewan, I am numbered among many who will be better because you lived. Your time with us was short, but your reach was enormous. Though I will miss you forever, though the grief that comes from losing you will continue to turn me inside-out – though I will continue to have days where I will ask how the sun could shine, the birds sing, and the earth continue to spin – I will hold close to myself the knowledge that while loving you broke my heart, it healed it too.

All my love and more,
Mama

07 October 2010

A Holy Moment

Our dear friend Mary was at the baby shower that was held exactly a week before Ewan was born. A gifted photographer, she offered to be there for any important moments we wanted documented. We hoped and prayed that we wouldn't be calling on her for a night like this one.

When we knew we had to say goodbye to Ewan, I knew I wanted her there. When I called her, she did not hesitate in coming. As difficult as we knew it would be to view the images of that night again -- as much pain as we knew they would recall -- we knew they would be invaluable to us, their significance surpassing words. Aside from her skill as a photographer, we knew she would be the one who would love us and our child, and to treat these last hours with Ewan with surpassing love, dignity, and compassion.


Click to view larger image

This photo just slays me. I don't know how else to say it. I see the love we have for our son. I see your love there, too. I see our grief in letting him go, and our simultaneous acceptance of it. I see someone so innocent and not meant for this earth resting peacefully in our arms -- and looking at him, I wonder if just maybe he was too good for this place. I wonder if like his namesake Eliezer, he would say, Do not delay me. The LORD has made my mission successful. Now let me go back to my Master. I see the cross. I see the Trinity. I see the Blessed Mother. I see the dream and the nightmare holding hands, the darkness and the light bleeding together.

But the light is always more powerful than the darkness. No matter how dark the night, even the smallest pinprick of light pierces through. I really can't take any credit for Ewan, or for the light he shed. I'm certain that he gave me enough mystery to unravel for the rest of my life, even should that be another fifty or sixty years.

Sweet baby, you never really belonged to me. My understanding of what this means barely scratches the surface of the truth. Until my dying breath, I will miss you and weep for the loss of you, but thank God in every tear that I was the one called your mother.

29 August 2010

"Before the Morning"

My sister sent me this song because she said it made her think of us, and what our little family is going through right now. Anyone who has struggled through times that took you beyond the ends of yourself can relate, I'm sure. That's just about everyone, isn't it?

I trust there's a reason for all of this. I trust that the pain we feel now, the struggle we engage with now and all that it entails, is not in vain. I have confidence that God is going to use the life of this little one in a powerful way.

But when it hurts like it's been hurting lately, it just feels like pain. When it is ONE THING AFTER ANOTHER it feels impossible with impossible on top, served in a big steaming dish of impossible -- like there's no way we can wake up one more morning and face what we have to face.

There's a lot more I could say, but enough from me. Here's the song already:


Before the Morning
Josh Wilson


UPDATE: All my sister knew when she sent me this song was that Josh Wilson had written it for friends. Thanks to the heart moms out there for letting me know just HOW perfect a song this is. He wrote it for friends of his who had a baby with Hypoplastic Left Heart Syndrome (so of course, I've already sent this to Jill). Thanks to Joye for the link!

Here is the backstory:

29 July 2010

sacred & mysterious

Before I was married, before Ewan ever existed, I always wondered what it would be like -- feel like -- to be pregnant. To be something and someone for someone else that no one else could ever be: a mother. Sustaining life in its earliest and most delicate and precarious days.

30 weeks pregnant belly
by kirsten michelle (2010)

Much of it was what I had expected but had never experienced directly: the fatigue in the early days, the getting sick. I knew to expect a growing belly, but I wondered what I would look like. Would I get big all over, or would I be what I often heard termed "all baby" -- with the womb just stretching out in front? I wondered at what it would feel like to have another human life inside -- nudging, rolling, kicking, stretching. Living. Another person: another soul with skin and bones and blood.

I don't know how to describe it. As someone who thrives on the stringing together of the right words, I find myself at a loss. I can only say that it is one of the most intimate and mysterious things I have ever experienced. Even the best comparisons I can come up with fall too short. It feels so sacred that I almost fear trying to put words to any of it.

It baffles me that all these days of my life, Ewan didn't exist. He simply was not. And now he is. And he is in me; he can be in no one else.

That boggles me completely. The word "miracle" comes to mind, and in a way that makes me want to whisper it because it is something so incredible and beautiful and mysterious that it seems too little and not potent enough for what this is.

And so I embrace this mystery, pushing away anything that would dare to make it seem less.

22 July 2010

"I was born with Tetralogy of Fallot"

Behold, the power of Google!

I haven't Googled Tetralogy of Fallot much for fear of what I might find. I've been very fortunate that many other heart moms who blog have also found me, some of them having babies born with Tetralogy of Fallot (ToF). I can't tell you how encouraging it's been to meet these moms who can validate every feeling and fear I've had, and also offer encouragement and hope as we get ready to face the reality of this defect in Ewan's heart.

But I Googled it yesterday, and I can't really tell you why. I was looking for more personal accounts, more stories. And I found a piece written by Adam on the Saving Little Hearts blog, someone just a few years younger than myself who was born with ToF .

One thing I've struggled with since finding out about Ewan's heart was guilt for the challenges he would face in life that so many children don't have to deal with: surgeries, medications, being a lifelong heart patient, wondering if he would be able to be as active outside the womb as he is in it. Reading this was so encouraging. This young man views his struggles as a gift.

In one of the closing paragraphs, he writes:
I will say this, if God had given me a choice to enter this world as a completely normal and healthy boy or as a boy with Tetralogy of Fallot, I would choose to have the Tetralogy of Fallot every single time. My life is a blessing that I wish never to take for granted. Because of my heart, my perspective on life has drastically changed. I cherish each day and try to live from an eternal perspective. Also, my relationship with God without my defected heart would not be the same as it is now. He has matured me and developed me through perseverance in the dark hours and therefore teaching me how to trust Him. Among the so many things I have learned, He has taught me to have the right attitude no matter what. Our attitude determines the choices we make. I could just have easily chosen to deny my heart struggles and become angry with God and the people in my life. But, with His help (and I would not be here without Him) and guidance, He brought me through safely, stronger, and wiser. He has replaced that fear I experienced as a 16 yr old with joy and gratefulness. I am so thankful for my heart defect. I would not be who I am without it. 
I can only hope that Ewan one day has a perspective that is similar to what Adam expresses: that this is a gift, that this brings him closer to God, that it helps him to trust God all the more. I know that's what this heart defect is doing for Ewan's parents.

Read the full piece here: 

28 June 2010

walking a straight path

 

Have you ever had one of those "light bulb" moments -- where something that you overlooked or thought you understood before suddenly takes on a striking new meaning to you? I've just had that happen!

I read a passage in Hebrews the other day that I know I've read many times before. But this time I read it with new eyes, and with the knowledge of what lies on the path ahead. In the context of enduring all manner of hardship as discipline, the author writes this:
For [our earthly fathers] disciplined us for a short time as it seemed best to them, but he disciplines us for our good, that we may share his holiness. For the moment all discipline seems painful rather than pleasant, but later it yields the peaceful fruit of righteousness to those who have been trained by it.

Therefore lift your drooping hands and strengthen your weak knees, and make straight paths for your feet, so that what is lame may not be put out of joint but rather be healed.
Hebrews 11:10-13
Do you see that last sentence? How is it this never clicked with me before?! I've read plenty about rejoicing in our suffering (which seems backward enough), and even grasped the concept that hardship is purifying. But this just gave rise to a sudden moment of clarity: something became clear that had been veiled in mystery before.

Let me see if I can explain. We get that we should endure hardship as discipline, because this is for our good. Hardship trains us, and eventually will yield the "peaceful fruit of righteousness."

The last sentence expands on this. If I'm reading this correctly, the author is basically saying this: Hardship will come, so make sure you are ready for it. Take care not to forget what you already know about living a righteous life (i.e., walking the "straight path": obeying God's commands, trusting His promises, even when it seems like none of it makes sense). This hardship will train and strengthen and heal those weak parts of you if you let them, but they also have the potential to weaken and injure if you're not walking the straight path. So be on your guard to make sure injury doesn't happen.

The author understands that hardship can affect us in one of two ways: the healing and "peaceful fruit of righteousness" way, or the "put out of joint" way. We know hardship will come for each of us. None of us is exempt. The best we can do is to prepare ourselves, doing everything in our power to see that our hardship makes us more like Christ, rather than allowing it to maim us when it comes.

One of the many reasons I write all these things in a blog is to remind myself, and to invite you to remind me of what I already know when our feet are to the fire. I do this so those weak parts of me won't be put out of joint, but rather strengthened and healed. Healed, I tell you. That's what the author of Hebrews says is one of the fruits of being trained by hardship.

Even though I cannot fathom how this experience has the potential to be healing, I want to invite God to do that.

Will you walk with me?

26 June 2010

baby spaces

It's not hard to remember the days before our first ultrasound. We were eagerly counting down the days until we found out if we were having a boy or a girl. I had a very clear picture in my mind of rushing out to shop for the first gender-appropriate outfit right after our ultrasound appointment.

That didn't happen. In the wake of receiving the news we did about Ewan's heart, shopping for him was the last thing on my mind. I cycled through more feelings than can be named: I felt guilt, wondering if my body had betrayed him. I felt grieved, knowing that as tough as life is already, my child would be facing additional challenges in his first weeks of life. I felt despaired as I soaked in the information the doctors had told us, wondering if the outcome could really be as hopeful as they projected. I felt hopeless, devoid of joy, assaulted by sadness, and unspeakably jealous of every mother and father who had never gotten bad news at an ultrasound.

I remember going to Target the day after we heard the news, just to pick up some basics we needed at home: toilet paper, toothpaste -- those sorts of things. In the space of about five minutes, I saw no less than six healthy, cooing baby boys. I couldn't help it. I rushed out of there, weeping.

It took at least a week before I felt like I could be joyful in preparing for his arrival, before I could imagine his room: the colors, the bedding, the furniture, the arrangement. In the weeks that followed, we completed our registry, and I felt excitement again over preparing for the arrival of our baby. Now, I can''t be stopped!

In an earlier post, I told you about the print I ordered from Etsy. The print is entitled You CAN do it! that I've chosen to represent Team Ewan and all that people that are praying for, encouraging, and cheering him on.

This, my friends, is what you will look like to Ewan (you are very cute!!):


When I ordered the print, I sent the artist a brief note explaining our situation and why the print had significance to us. She also included a very sweet personal note ...


... and some extra postcard prints!


We've got a lot of work to do before we're ready to really get going on the nursery, though. This is what his room looks like now (we moved four weeks ago ... that counts as "just moved", right?). This room is our project for today.

In other baby room news, I also picked up some paint swatches to play with. My Dad has graciously offered to be the official baby room painter! I have no idea what I'm going to do yet, but I've got hundreds of ideas bouncing around in my head -- ideas that I'm flirting with and playing with about stripes and accents and all sorts of things, wondering what we can do with them (and wondering if we can execute on them). I have no idea how it will turn out, but I can tell you this: we will not, under any circumstances, be afraid of color.


No, no. We will not be afraid of color!!

The artwork:
In case you missed it in the first post, the print we ordered from Etsy is by Marisa of Creative Thursday. She has oodles and oodles of adorable prints with a cast of characters just like you see in the You CAN do it print.

16 June 2010

for the nursery

I ran across this print on Etsy (a dangerous place indeed, even if you're not an expectant mother) a few days ago and knew that this belonged to Ewan. The print, by Marisa of Creative Thursday, is called You CAN Do It.

I saw these seven little friends with hands raised, cheering on Ewan, reminding him (and us) that he can pull through this. He's already proven himself a feisty and active one, and with the Norwegian, Swedish, Danish, and German heritages we're passing on to him, there's no doubt that he's got fighting blood in his veins.

Rawr.

"You CAN do it"

Click on the link above to go to the Creative Thursday shop @ Etsy and to check out more of Marisa's beautiful and whimsical work!!