A few random things

Life these days is a little crazy (hold the "little") and fragmented, and so is this blog post! Here are just a few of the things going on these days ...


1. I don't think I've mentioned that once I get to Florida, I won't need to work anymore. Wahoo! This is both incredibly exciting to me, and just a tad unnerving. Not needing to work will give me the freedom to work on writing a book, spending more time on photography, and to do the oh-so glamorous work of growing a baby and maintaining a home. As excited as I am, I know it's going to be a tremendous adjustment. After graduating from college, I took a two-week break and then promptly began working full-time. I haven't stopped since then (11 years!), so it's going to be crazy not to be earning a paycheck of my own.

2. I have been consistently sick with this pregnancy -- just like clockwork. Though I doubt this little one's personality is exerting much influence over my hormones, I can't help but notice the fact that for the last several weeks, I've been getting sick on a very regular schedule. Could it be a sign of things to come?? ;o)

3. Seattle Children's Hospital is having a memorial service this coming Sunday to remember and honor all the children who have died in the past year. My family and I will be attending for Ewan, and visiting the cemetery where he is buried (which is very close by) afterward. I've visited the hospital just once or twice since his death to pick up some of his things, and to visit a family we met there -- so it will be strange to be back there again.

4. I can't wait to get to Florida. It's not because I'm not going to miss it here in Seattle -- I really, really am. I'm going to miss the place and the people I love here. But being so far from my husband for this long is hard on us both. Skype is wonderful, but only gets us so far. To say I'm looking forward to the day when we're together again is a tremendous understatement!

One of the many reasons I love Washington: woods like these!

An Elegy for My Grandfather

From my grandfather's memorial service today
14 May 2011



This is the second time in under a year that I've gotten up in front of a group like this to speak about someone we've loved and lost. Finding fitting words for days such as these is a daunting task -- there is nothing to say that will ease the ache, nothing to say that will fill the spot that his death has made empty. Words cannot do that. My grandfather's death reminds us of what we all know in our hearts: it's not supposed to be this way, whether the one who dies is 16 days old or 88 years old. It reminds us that the world is a fallen and imperfect place.

Before we were married, I was lamenting to my husband about some particular evil, telling him how it broke my heart. It surprised me when he said, "That's a good thing." Puzzled, I asked what he meant. He explained, "The only healthy response to a fallen world is brokenness." He was right. As backwards as it may have sounded, my broken heart was a good thing.

My grandfather was not just a good man, but among the best of men. He loved hard work, and he knew how to play hard, too. He loved his family deeply and adored his wife. He was an artist and a craftsman. He was kind and generous with himself. He had a wonderfully jovial and childlike spirit, and always a twinkle in his eye. Greetings and goodbyes came with a wink and an impish grin. He never had a harsh word for or about anyone. And he would probably hate that I had gone even this far in describing him, becuase he was a humble man, and a man of vibrant faith. He was not perfect, but he was amongst the kindest and best of men.

When we buried our son seven months ago, we heard a lot of things from people that were well-intentioned and meant to be comforting, but really missed the mark -- things like, "Don't cry. He's in heaven now," or "You should be glad that he isn't suffering anymore." As true as these things are, they were not comfort. It felt like our grief was being minimized, like they were trying to talk us out of our sadness. But we knew what we had lost, and no amount of talking was going to make our broken world look whole again.

There is room in our faith for such brokenness. In Chapter 11 of Saint John's gospel, we are told that "Jesus wept," -- these tears coming just before Jesus raised His friend from the dead. In 1 Thessalonians, Saint Paul encourages the church to grieve, but not to grieve without hope as the world does. There is no reason to believe that we have to put on a happy face when someone we love has died. We don't need to pretend that we feel good about it. In our one hand, we can hold the truth that the one we love has gone on to his eternal reward, and in the other, we hold the weight of the ache, the sadness, and the loss. One does not cancel out or mitigate the other. It is not either/or, but both/and.

So I am not going to tell you all the reasons you shouldn't be sad. However true it may be that he has gone on to his heavenly rest, early Monday morning, the world lost not just a good man, but one of the best, and nothing we say will make this broken world whole again. A wife has lost her husband, sons have lost their father, grandkids and great-grandkids their grandfather, and a whole community, their friend. Though we carry in us the hope that he, like Christ, will rise again, today we grieve because the one we love has died.


See the Memorial Video here.

Morning After

It was Saturday night, and almost six months to the day since we had decided to take Ewan off of ECMO. It had been a trying week and despite a mostly restful day, I was still exhausted. I walked into the bathroom to get ready for bed just like I do every night and it stopped me: the shelf I've walked right past and noticed hundreds of times. I reached out a hand and touched the stack of baby washcloths and towels that had never been used. I picked up the small blue terrycloth whale that never got to be the part of any bath time routine.

Suddenly, my heart hurt too much again. Not a moment goes by that I don't miss my son, but those moments still come where normalcy cracks and gives way to the grief that lies beneath it.

I made fists, and I hit the wall. I wept and pressed my forehead into my hands.

My son is dead.

A pile of washcloths and towels, a nubby little blue whale. In simplest terms, that is all it really is. But what I felt was the weight of six months of moments missed, of memories that never had a chance to be formed, of feeling deprived of the chance to care for my own son.

I dreamed of him that night. The scenery was different in my dream, but we were in a hospital waiting room with another parent waiting on his child's heart surgery. I remember feeling the same calmness and the same near certainty that I wouldn't see my child alive again. But in my dream, it turned out differently. In my dream, a nurse brought my child to me and placed him in my arms. I uttered and choked through sobs that I didn't think he would make it -- I thought for certain we were saying goodbye. I didn't think I would see him alive again. He was strong. He fought hard and he made it through, they told us.

In my dream, we got to take him home. He was well and he was thriving.

And then I woke up.

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.

Presence & Comfort

I have some pretty amazing friends -- some of whom I've never ever met before.

Hugging a friend at Ewan's funeral

Many of you reading here also know Jill. You may be here because she pointed you my way, or maybe it's the other way around. In any case, she's coming to Seattle on Wednesday morning to visit for a few days. We connected somehow over Twitter several months ago when, both of us pregnant (she about five weeks ahead of me), we were seeking to connect with other heart families. We were prenatally diagnosed (her baby Joshua with HLHS, and my baby Ewan with TOF and Pulmonary Atresia) about a month apart, our boys born about a month apart, and died just two days apart. We shared so much of this journey together, each of us having the chance to hold up the other.

And now we're taking advantage of the opportunity to connect in person. I think I can say for us both that we really don't want other people to share in common with us the thing that brought us together. But I think I can also say that we are incredibly thankful that each of us found the other: that if we had to walk this path, we did not have to walk it alone. It is so good to have someone else who can truly say: I get it.

I am also grateful to have other friends who can come and sit with me during this time. Christianne will come to visit for a few days in early November, and Sarah and Terri will follow shortly after. There is no agenda, and there are no set plans. These women are simply offering themselves and their hearts to me, to sit with me, cry with me, laugh with me, listen to me, and remember Ewan with me. I cannot think of a more generous offering.

I know it's not an easy thing to do, to sit with someone who is grieving. Grief makes for an unpredictable and rocky terrain with sharp peaks, deep valleys, and unexpected turns. Having people alongside for the journey may not change the severity of the terrain, but not having to navigate it alone makes a world of difference to the one who must walk it. I hope that someday, I can offer to someone else what these women offer me -- the chance simply to listen and be present, be available. Not to offer words where none will do.

To all of these women, thank you. To those who come and read here, thank you. To those who leave comments and send me e-mails and offer suggestions of ways Ewan's legacy can be passed on, I thank you. You all offer presence and comfort. You all remind me that I don't do this alone.

Don't Be Afraid

Before Ewan was born, I had an increasing fear of a list of a million different things that all added up to a big black ball called The Unknown. How bad was his heart? How long would we be in the hospital? How would we be able to make good decisions for him? Would we bring our baby home? How long would surgery take? What if he doesn't make it -- how will I survive?

It made me downright hypertensive.

And then everything happened when we didn't expect it. Instead of being born a week after the due date as I expected, he was born two and a half weeks ahead of it. Instead of having a date and time set for his first surgery, the first surgery was unexpectedly and emergently set when his oxygen saturation levels deteriorated during a routine visit to the cath lab.

There was no time to worry. There was no time to be afraid. 

And so as we walked through and waited through all the situations I had dreaded, all the situations that made my blood pressure rise -- I wasn't afraid. Even though things were worse than I had originally feared they would be -- even though by all accounts, I should have been hysterical, I experienced peace. I understood what was happening, and that the increasingly grim updates we received from the surgeons meant I might not take my baby home. The awareness of that could not and did not escape me. But I kept pumping that night, and I kept waiting. Those were the only ways I knew of that I had to mother him in those moments.

And still: peace. Beyond understanding, beyond my ability, straight from the gracious hand of God to my heart and mind. Right in the eye of the storm, it was there: underneath and all around me.

I stared my worst fear in the face. I walked through the very experience that not all that long ago, I feared more desperately than anything else. And instead of running away screaming, I was able to embrace it -- not because I was strong (because I most definitely was not) and not because I was blissfully unaware (because I knew his body was failing him). It was because in that moment, God gave me the very things I needed: peace to protect my heart and comfort my family, and the ability to do the impossible -- in the very moments that could have been pervaded by fear and resistance, to live in the grace given so we could say goodbye to my son in peace, surrounded by love, and embraced until his very last breath and very last heartbeat.

It was our gift to him, and his gift to us.

This is how Ewan taught me not to be afraid. No matter how large and looming and terrible the unknown may be, there is something bigger. There is grace larger than our fears, peace that is stronger than hysteria, and love big enough to stare down death.

It hardly needs to be said that sadness and grief remain -- and how could they not? I don't expect that my tears will cease any time soon. I imagine that I will continue to weep spontaneously in the check out line at the grocery store, or when picking out clothes to wear. When seeing a healthy baby boy in the elevator or a pregnant woman at work. But I won't be afraid, even of that. The love God gave us in Ewan is bigger than all of it.

I love you, dear sweet boy.

Our Last Night Together

I'm not the least bit religious, she said, but you can feel the angels in that room.

The ECMO specialist said this to us after she left his room, clocking out at the end of her 7 am - 7 pm shift. We were in the hall waiting for my parents to arrive, calling our families and close friends to let them know we were saying goodbye to Ewan that night.

There were always two nurses in the room with Ewan when he was on ECMO. One ran the ECMO machine and the other nurse was there to keep an eye on everything else. On the day we said goodbye to Ewan, the two of them that were there had a combined ICU nursing experience of nearly fifty years.

The ECMO specialist that day adored our baby almost as much as we did. She was so tender with him, and couldn't get over how beautiful he was. It's so hard to believe that anything could be wrong with him. She helped us to get our hands under him in that little bed to hold him, even with all the tubing and monitors all around. It was difficult to navigate, but not impossible.

By all appearances, he had been doing so well the day before. While James grilled the doctor, I stayed as close to his bed as I could, touching him, talking to him, singing to him. His big blue eyes were wide open and fixed on mine. He moved his mouth as if he were having a conversation with me. Even for all he had been through, he was so beautiful. I stayed with him, my hand on his head, stroking his hair. My other hand finding any other bit of his flesh to touch: an arm, a hand, a leg.

Since he was doing as well as he was, we told our nurses we were going to spend the night at home, about a twenty-five minute drive from the hospital. It was the first time in over a week we had dared spend the night away. We finally left the hospital at about 7:30 Saturday night.

It shouldn't have surprised me the next day to find that things had changed as quickly as they had. We've seen this before, and it doesn't get any easier. He's not neurologically responsive. He hasn't opened his eyes all day. I couldn't believe what I was hearing. But just the day before ...

For our child, that was saying something. This is the boy who managed to stay awake more than one time even after receiving a bolus of morphine, who made sure he saw us if he knew we were in the room. This is the boy who, whenever his nurses touched him, resisted and responded: raising his arms, making a fist, stretching his legs.

When I lifted his arm now, he didn't resist. It would return to his side with a flop. I tickled his feet -- this had always had gotten a response before. Nothing. And then we heard about the infection, and the problems with his intestines. About poor oxygen perfusion. We he was born, everything else about our child save the heart had been perfectly healthy. And now everything was failing him.

The day before had brought so much hope for me. But I knew what this meant. 

It took some time and discussing, but we finally agreed that artificially prolonging his life and waiting for a middle-of-the-night phone call saying he was gone was not how we wanted this to go. If we had to say goodbye, he was going to be surrounded by love and sent off in peace. My sister and a couple of friends were already there. Our friend Mary had come to take pictures for us. When my parents arrived, we descended on his room.

We are here to make this whatever you want and need it to be, the nurse told us. You let us know what you want, and we are here to make sure that happens. I made sure to ask for footprints, handprints, and a lock of hair. We discussed the logistics of extubation and when and how the ECMO would be shut off.

They paged Ewan's doctor who came in his street clothes. He put an arm around each of us and said he was sorry, offered his condolences. For what it's worth, I think you're making a brave decision -- and the right one.

I looked at the man who had been treating my son. He had advocated for Ewan, too. We didn't get to choose anything that really mattered for Ewan -- his heart, his surgeries, I told him. But we can choose this for our son.

The eight of us that were there gathered around Ewan in his bed and we took turns being close to him. I kissed his hands, his head, and I nibbled on those sweet little toes. We prayed over him and cried. Thank you, God, for the gift of Ewan. Thank you for his life ...

We couldn't get the words out without choking on them. A painful ball rose at the back of my throat. I was the one who had pressed to do it this way. And now that it was really happening, it was so much more difficult than I had imagined. I had cried so many times in the course of that week over how I didn't want him to be poked or sliced anymore, how I didn't want him to have to suffer anymore. But I still wanted my baby. I still wanted to bring him home. I didn't want to say goodbye.

Eventually, the prayer turned to song. As we sang, they brought a couch into the room and positioned it close to his bedside. The respiratory therapist extubated Ewan, and the nurse took all the stickers and monitors off his face, wiping off any last traces of sticky residue. James and I sat down, and they put a couple of baby blankets on his lap. I hated that this had to be his first time holding his son. I hated that the only time after his birth that we would get an unobstructed view of his face was at his death.

But I remembered what I had said to the doctor. We didn't get to make choices about Ewan's heart -- but we can choose this.

As the nurses waited outside, James held him and we cried. I touched his feet and kissed his toes, I reached up and stroked his soft brown hair. Even as near death as he was, he was strikingly beautiful. We continued to talk to him, sing to him, pray over him. The others in the room gathered around us to get a closer look at Ewan, to offer us a hand on the shoulder.

Ewan's grandmother and aunt each got to hold him -- everyone got a chance to kiss him, touch him, whisper their love to him.

I was the last one to hold him. Everyone but James and I left the room and I held my son one last time. I cried over him and apologized for what he had suffered. I told him how much I missed him and how much I had always wanted him. I thanked him for fighting for as hard as he did, for having such a strong will to live. And so I held on for awhile. We wept in silence.

Several hours had passed since we had entered his room. James and I both knew that we would never really be ready. But when we were as ready as we could be, we brought the nurses in. We're ready, we told them, giving them the cue to shut off the ECMO machine and every last monitor. The room went silent and still. The color of Ewan's skin changed almost instantly. I held on to him, holding him as close to my own heart as I could, and made sure not to pull away from a single second of it, to take in every last second of his earthly life.

I wept, and I wept. His heart rate slowed and after a few minutes, stopped completely. Ewan was gone. If I had had my say, I never would have chosen goodbye. But since goodbye chose us, I would not have done it any other way. He came into this world in my arms, and that is exactly how he left.

Rest in peace, sweet Ewan. We love you. We miss you. Please pray for us.

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Today (October 15) is National Pregnancy & Infant Loss Remembrance Day. Find out more.