We are a Family of Four

It's hard to believe Evangeline was born 2 years ago. In a way it seems like it couldn't have been that long ago, but it's also hard to remember life before her so in that was it seems like a very long 2 years. I've been stressing a little leading up to this day because I've wondered, how do you mark an occasion like this? November 17th, 2007 was a day of great joy, and I wish that I could just celebrate that joy, but instead all I can feel is what's missing.

I think I'll take the opportunity of her birthday to work with Matt to put all of her pictures into a album. Strangely, even though I have each and every picture of her printed and an album chosen, I have never completed that project. We will have the evening together as a family--please pray for us as we spend time remembering Evie on her special day.

-Nicole

Girl Power!

We had a really great day yesterday! We had our appointment for my 20 week ultrasound, and given our history with Evie, I got a little more than the routine treatment. I saw 3 specialists for about a half hour each: 1 to do the routine ultrasound, 1 who looked only at the structure of the heart, and 1 who looked at all the other organs and bones and such. All in all my belly was abused for about an hour and a half! But it was so fun. One of the very first things we found out was that it's a GIRL! And the best thing we found out is that she seems to be in great health. They can't see everything on the ultrasound, but they can see a lot--including most of our concerns about the heart. Everything is in its right place and appears to be the right size. Thanks to everyone who prayed for us and encouraged us! We feel so lucky.

Interesting coincidence--I knew that the person who would be looking at the heart would be a cardiologist from Children's Memorial, but I imagined the chance of it being someone we knew would be slim because they have nearly 20 cardiologists on staff and we only met with 3. It just happened to be that the cardiologist who came to do my ultrasound was a Dr. we met on the very first day that Evie was admitted to Children's. She did Evie's echocardiogram on that day, but that was the only time we met her. She still remembered me and Evie even though it has been over a year! Such good people.

I feel that while I'm being honest about my joy I should also be honest about my grief. I found that when we discovered that the heart was in great shape I was so relieved, but then also heartbroken all over again that Evie didn't get to have the same fortune. I wish our 2 daughters could have had the same opportunities. Matt and I have seen a therapist periodically since Evie's death and we have talked extensively about future children. One thing he's always noted is that with the joy of seeing milestones in our children's lives, grief will also come. I didn't take that to heart until yesterday and now I can see what he means. While I feel like I have gotten a great gift, I also am bound to remember that Evie got cheated out of the gifts of health and life.

With that said, we are THRILLED! So happy that we got a good health report, and also that pigtails and dresses are in our near future. :) Poor Matt will be outnumbered in his own home!

A Year is a Relative Thing

Where can I go from your Spirit?
Where can I flee from your Presence?
If I ascend into heaven, you are there;
If I make my bed in the grave, you are there;
If I rise on the wings of the morning
or dwell on the farthest reaches of the sea,
even there your hand shall lead me
and your right hand shall hold me.
If I say, "Surely the darkness shall cover me
and the night shall be light about me,"
Even the darkness hides nothing from You,
but the night shines as the day;
the darkness and the light are both alike to You.
-Psalm 139

Tonight marks an entire year since the night we held our daughter for the final time as she breathed her last. Easily, the darkest moment of our lives. Its something I wouldn't wish on my worst enemy. There are times when people pass away, and though sad, it is a holy moment to honor a life well lived. Many other times, premature death shatters all we know to be good and holy. The night Evie died was a night of bitter loneliness. I did not know where God was.

Do you show your wonders to the dead?
Do their Spirits rise up to praise you?
Is your love declared in the grave?
Why do you hide your face from me?
You have taken from me...
Darkness is my only companion
-Psalm 88

In the following days, weeks, and months our friends surrounded us with care. They prayed when we could not. I grasped for faith, and occasionally, caught hold of something. Or perhaps, more accurately, someone got a hold of me. My mind still frequently remembers holding her cold body and wondering where God went. Eventually, I learned where God was. Here...

God was in Christ, reconciling the world to himself
-2 Corinthians 5.19

Where was God? He was on the cross, befriending my daughter in his death. God the Father, grieving the grief that we know... that he knows. But that is not the final word.

In bringing many sons and daughters to glory, it was fitting that God, for whom and through whom everything exists, should make the pioneer of their salvation perfect through what he suffered... Since children have flesh and blood, he too shared in their humanity so that by his death he might break the power of him who holds the power of death—that is, the devil—and free those who all their lives were held in slavery by their fear of death. -Hebrews 2.10, 14-5

God knows. God cares. More than that, God saves. The love demonstrated in the death and resurrection of Christ means not only that Evie is not alone, but that she and I and all who belong to him will not stay dead. Death has been swallowed up in Victory! Where, O Death, is your Victory? Where, O Death, is your sting? -I Corinthians 15:55

=======

Still, we miss her so much. The passage of time has healed a lot of wounds, but in some ways its painful to think about how long she's been gone. Grief is a curious thing. It ebbs and flows and shows up in unexpected ways. Today has been a mostly good day. We've spent it together just being with one another and also finding some holiday activities to lift our spirits a little bit.

Studies have shown that couples who lose a child might triple their odds of divorce. There might be a few different reasons for this. For one, the inevitable depression that accompanies the loss can put incredible strain on marriage. The adage might also be true that "hurt people, hurt people". While certainly the pain of losing Evie impacted our relationship, remarkably our love for each other has been an incredible source of strength for the battle. We know we need each other. We're blessed to have each other to carry one another. We're also blessed to have such a wonderful community of people who look out for us and have helped us along this last year: both our biological family, our many church families, and friends from all over. We'll never be able to thank you all enough.

One Year

She would have been 1 today. I'm not sure what to write. Its a tough day for us, but perhaps not as bad as we feared. Surely, there have been and will be tears; but while our hearts ache I think I can also say that I experience some measure of "peace that passes understanding". I've never been "Pollyannaish" about suffering and redemption, I read the bible too much to believe trite sentiments. Sometimes life really sucks. Still, sometimes grace gives you the strength to suffer today in order to see hope tomorrow. We love her and miss her so much, and today is yet another milestone robbed from us by the enemy. But we honor her short life by continuing to live ours. We spent some time away this weekend, just Nicole and I to be by ourselves and to escape. It was nice. We carry grief in our hearts, but also some joy at the privilige to have known and cared for her. We are also glad for the many kind words shared with us already as we face these painful anniversaries. Happy Birthday, Evie.

Children's Heartlink.

The Plateau

When a couple breaks up, its said that it takes as long as you were ever with that person to get over that person. If you dated for 6 months, it might take 6 months for you to finally get over them. They also say "time heals all wounds". To compare the loss of a child to a break up is a grotesque comparison (though that's obvious, I'll still elaborate later). What I would like to say is that time does not heal all wounds. Some wounds we will carry all our life. That's a lesson I'm learning as today is now 11 months since Evie was born. Its been much longer that Evie's been gone than we ever knew she existed. In just a few weeks an entire year will have passed. While my journey of grief has come along way (I am no where near the place I was in January or March or even June), in some ways I've found that the sense of healing has plateaued somewhat. In fact, pain and grief now show up in new ways and it stings worse than it has. They are fresh wounds.

So what is happening? How could things steadily get better and then not? I think a few things have happened. The first is a simple phenomenon: I have more free time. This spring I was breaking my back trying to finish incomplete work from the fall on top of a full load of spring coursework in addition to an internship. The "busyness" of life was a suitable distraction from the deep grief inside. Then with my new work this summer, I've still filled many hours with work, but its a different kind of work. Its a lot of time spent alone. Its a lot of hours alone in traffic. Its a lot of "body work", and a lot less "mind work". I now have the time for my mind to wander-- and it wanders back to Children's Memorial Hospital. I relive the frightening experiences in unprecedented detail. Images, sounds, smells, and feelings are as clear as day. Memories of these are not as frightening as they once were, but they still hurt.

There is a second phenomenon that is more unique to the premature death of a child. We mourn not only the past but the future. We will mourn the entirety of what Evie's life should have been. We mourn the those life-markers that will not happen: first steps, first words, first birthdays, first day of school... those are all little deaths that we must mourn in the wake of our great loss. While it doesn't bother me to be around the children of my friends, for some reason when I see a stranger with a child about the same age that Evie would be--it feels like a roundhouse kick to the stomach... and to the heart. We grieve the loss we experienced last year, but we continue to grieve the lifetime of joy stolen from us.

We feel anger, sadness, and a bit of "lostness". Still, I've considered this new phase of grief a necessary stage of the journey. Grief is work. Its work that I may have set aside in my busyness this spring, but like all things there is a time to collect on debts. What I'm realizing as I return to the work of grief is that the payoff might not be what I initially expected. Healing might not look the way I think. What I mean is that I now no longer ever expect to be "fully normal" again in this life. Everything is different. Its not unlike a physical injury. Surgery and therapy might return you to function, but it is still likely you'll continue to walk with a limp. The process of grief has and will continue to return me to functional, but I still live and love "with a limp".

As I have always said, writing about these things is not to fish for sympathy. Its merely that there is something cathartic about talking about it. It feels good to tell our story. Thanks for listening.

Shut up and Drive!

Don't text message while driving 80mph the wrong way down a street. Talking on your cell while driving is a bad idea. A study a few years ago indicated that for many drivers talking on a cell phone is as much an impairment as drinking is. I'm quite serious about this for two reasons: (1) I've done it and nearly killed someone (2) I've seen someone killed by it.

Years ago when I lived in Gig Harbor I was leaving work one evening, pulling out of the parking lot with a cell phone to my ear. I was going to make a right turn. I looked right and didn't see anyone, I looked left and watched a few cars pass and then planned to turn right. With my hand and phone up to the side of my face I was not able to see that a bicyclist had appeared to my right and as I pulled out he ran into the side of my car. Had he been a few feet further along I could have ran over him. He was alright and I apologized profusely. A couple months later I greeted a visitor at our church who looked familiar, I asked him where I might know him from and he recounted the story of the time I nearly hit him on his bike. It was quite embarrassing, but luckily he didn't hold it against the church community and became an active member there.

The second story doesn't end so well and I'll warn readers right now this is gruesome, but its a point that needs to be made. The most difficult case I ever encountered at my internship at Lutheran General hospital was an accident that took place on a Sunday afternoon. Walking along Dempster Ave a beautiful young family was enjoying a lovely summer day when a woman lost control of her vehicle while talking on her cell phone. Her car careened up onto the sidewalk hitting all three family members; the father had his leg broken in two places as well as broken ribs, the mother sustained a massive head injury putting her in a coma that resulted with weeks in intensive care, and their only son--a four year old-- was scissored in half (traumatic amputation) by the car and bled to death on the sidewalk. It was the most traumatic event I had ever encountered in my hospital ministry. No one ever deserves to have that happen to them.

Nicole and I have written before about how our experience with Evie reinvigorated our understanding of the fragility and the preciousness of life. I'll admit that occasionally I talk on the cell phone when stuck in traffic, but when you are at the wheel of a 2,000lbs weapon like an automobile, the driving task deserves total concentration. Better yet, pedestrians deserve your total concentration. Children on the sidewalk deserve to live. Shut up and drive.

Decisions and Spiritual Reflections

Being in seminary was an experience that surprisingly limited the amount of decisions I had to make. Essentially the life of a seminary student is to show up, do what your professors tell you to do, and try and squeeze in a little sleep now and then. Sure, occasionally you had some life decisions to make carefully, but most of the time you're so busy just trying to stay afloat that you don't have time to consider other alternatives.

Now that I'm living a partway normal life again, I feel the pressures of making right and wrong decisions more clearly now. When prayer, reflection, dialogue, study, and critical thinking are part of you're assigned work--you do it. But now that I'm "free" from the watchful guidance of professors and colleagues, I find myself less and less practicing the art of moral discernment. In my day to day decisions, how do I decide what is right and what is wrong?

I've long believed that Christian life in its most basic principle is that God cares for us, thus we should care what God wants of us. It is that principle which shapes every decision of everyday. But this presupposes a couple things: one being that you believe God cares, and two being that you are willing to let your life be led by another--that you're willing to give up your freedom for the one who "took the nature of a slave... humbled... by becoming obedient to the point of death--even death on a cross!" (Phillipians 2.7-8). Christian life means admitting that you don't have all the answers and that you need someone else to show you the way.

For a Christian, the moral life must first and foremost be shaped not only by the example of Jesus--but by seeking to know Jesus intimately by way of prayer, devotion, and participation in Jesus' family (the Church). Here is where I've run into trouble. Without a disciplined life set up for me in the form of the seminary educational experience, I've found that on my own I've fallen out of practice in some of these things. Prayer life is too inconsistent, I've sometimes now gone weeks between times of good devotional reading and reflection, and since being finished with my internship in Lake Geneva its been hard to fully involve myself in the life of my local church--in fact, in two of the last three weeks I've missed Sunday worship for less than good reasons.

Now as I try and live my moral life I think I've been running and operating on some "moral capital" that I've built up in my life--but that my "tanks" are running a bit low without daily disciplines to know and follow Jesus. I still make the best effort to love and respect everyone, I still try and use my money and time as if they were gifts and not something owed to me, I try and live responsibly towards all. Not always successfully, but I make an honest effort a lot of the time. Yet nowadays, as larger decisions loom on the horizon of what direction our lives will go-- I find myself challenged to ask myself what does Jesus really want from me? Is what Jesus wants from me different from what society tells me is right? Is what Jesus wants different even from what my friends and family might think is right? Read the gospels and one finds that the moral commands of Jesus were often unpopular. The rich young man wants to follow Jesus and proudly admits he keeps all the commandments, but when Jesus tells him to sell everything and give all the money to the poor, the young man can't commit. I'm no different. Why should I think that Jesus expects less of me? All around us the world bombards us with admonition to seek out money, sex, and power. Jesus, on the other hand, invites us to seek out love, faithfulness, and service. That's not a good way to sell cars... or make friends.

When Evie was fighting for her life in the hospital, Nicole and I were prepared to sacrifice everything to give her the chance to live. We loved her and were prepared to do what it takes. The loving character of God is the same way, demonstrated in the loving sacrifice of Christ to give us the chance to live. After Evie died, Nicole and I took the break we needed to begin the healing process of grief and we've been consistent in finding ways to try and enjoy ourselves by taking time to recreate and relax--especially this summer. But at what point do we refocus our energy again to the loving sacrifice we were so prepared to make for Evie, this time for our friend Jesus? Have we crossed a line from "self-care" to "self indulgence"? Its not easy to live a good life right now. I've found vices creeping in more steadily. I have a feeling it not unrelated to the fact that my faith is still somewhat weak and that in the wound I felt at the death of Evie, I have not yet fully placed my trust back in my God. It is like a friendship strained-- you still know this friend and still have affection for them, but things just aren't quite the same between the two of you. In some ways I still struggle to know and love God in light of this tragedy. But I am nowhere near ready to give up. I know God has been patient with me. I ought to return the favor.

Our loving God is not some kind of fuddy-duddy from on high who doesn't want humans to have fun or enjoy themselves. God is for abundant life, God is the giver of good gifts. What God expects of us is that we use his good gifts responsibly-- for the good of both ourselves and others, trusting that the creator knows best where lasting joy and satisfaction are. Its a matter of trusting that lasting joy might exist elsewhere besides indulgence in physical and material pleasures or self-oriented human relationships. One only need look around at the abundance of self-destruction that happens among those who achieve all the money, sex, and power they want to see that lasting joy is not found there. If the good life is not found in such things, then perhaps St. Francis was right, "It is in giving that we receive... it is in dying (to self?) that we are born into eternal life".

Its not always a popular thing to talk about morality and there are a lot of self-righteous people out there who have tainted the discussion. These thoughts aren't about passing judgement on another--but rather an acknowledgement that all of us sinners who dare turn to Jesus have both a welcome embrace of his love but also an invitation to live a radical life of virtue. As Luther said of us who dare preach the gospel, "we're just beggars telling other beggars where to find bread."

Nurturing a good life takes practice: spiritual discipline. Creating daily habbits of charity, justice, faithfulness, self-control, and care will form us into the people who can make good decisions both big and small.

Echocardiograms

I originally posted this on 4/25/08, but I thought I'd bump it back up to the top so anyone who didn't read it before might see it. Go ahead and sign the petition if you think it's as important as I do!

You probably didn't know this, because before Evie was diagnosed neither did I, but Congenital Heart Defects are the #1 most common birth defect. The stats I've found about its frequency are approximately 1/100 to 1/125 people are born with some type of CHD. However, though hospitals do a myriad of tests on babies during their first day, an echocardiogram is not one of them. I'm no doctor, so excuse me if this is an inaccurate description of what an "echo" is, but essentially it is an ultrasound of the heart. There is no way that when I have more children that I will take them home from the hospital without having an echo first. But since this is not currently a required test, it's my understanding that medical insurance would not cover it. I found an online petition through Facebook that has the goal of urging that echocardiograms be a standard test for newborns. It is my opinion that each newborn needs this because it may just give 1 in 125 babies a better chance at life. See the petition here.

You may be wondering who this petition is going to be presented to, and I don't really have an answer. I looked for details and didn't find any specifics. But I signed it anyway and would encourage everyone else to do so as well because so far it's the only thing I've found that is working towards this cause.

EDIT: For clarification, I'm fairly confident that in our daughter's case her death wasn't caused by the lack of early diagnosis. She had an ER scare but was stabilized very quickly and remained stable for the entire week leading up to her surgery. However, had we not perceived on our own that something was wrong and brought her in to the hospital, she likely would have had a cardiac arrest at home. Such is the case for many newborns with CHD.

Kept in my heart

Shadows are falling and I'm running out of breath
Keep me in your heart for awhile

If I leave you it doesn't mean I love you any less
Keep me in your heart for awhile

When you get up in the morning and you see that crazy sun
Keep me in your heart for awhile

There's a train leaving nightly called when all is said and done
Keep me in your heart for awhile

Sometimes when you're doing simple things
around the house
Maybe you'll think of me and smile

You know I'm tied to you like the buttons on
your blouse
Keep me in your heart for awhile

Hold me in your thoughts, take me to your dreams
Touch me as I fall into view
When the winter comes keep the fires lit
And I will be right next to you

Keep me in your heart for awhile

-Warren Zevon

Special Day

Today was Mother's Day (I assume you already knew that, and if you didn't you're probably in trouble!). I was pretty worried about what this would be like for me, since I live in the very strange world of being a mother without a child. But it turned out to be a very lovely day (though not weather-wise). I was given flowers and a home-cooked salmon dinner by my husband and lots of well-wishes from family, friends, and our church family. While I can't call my day a "Happy" Mother's Day, I can call it a "Special" Mother's Day. I feel very proud to be Evie's mom, and it was great to have that recognized. Thanks to everyone who cared for me today. :)

And Happy Mother's Day to my Mom, Matt's Mom, and all the other mothers in our lives!

The Shape it Takes

Today is four months since Evie died. Our grief counselor says that we're appropriately moving ahead through the stages of grief. Yet there are days like today when the wound hurts as much as it ever has, but it is different. My stages of grief have a different feel to them as time goes on, but the extent of the pain seems to heal oh so slowly. We've been able to put on a good face most of the time, but the truth is that we are still incredibly wounded.

In the first weeks after Evangeline died, I can't really remember what it all felt like. I'm sure it was horrific, but perhaps as a coping mechanism my mind is protecting me from those memories. What I can remember was the fear. The first 6-8 weeks of our grief were compounded by a kind of Post-traumatic stress disorder. Both Nicole and I would have flashbacks to the frightening episodes at the hospital. Sounds and images haunted us. Fortunately we're both struggling less with those experiences.

In more recent months, the pain has become a kind of enduring ache. The overwhelming feeling is that something is missing. Every moment and event of the day is a reminder that she's not here. For the first three months I had very few dreams with Evie in them. In recent weeks, I've dreamt about her more--but they all end the same. I dream she is still alive, but the moment I realize its only a dream I wake up. All kinds of things will everyday remind me of what I've lost.

There are some sensitive souls out there who are mindful of us still, especially as we find ourselves around other babies. Yes, it is hard to see you laughing and enjoying your child, but we can't be tip-toed around forever. This is the way life is right now. We don't hate you or your babies for your happiness--except sometimes the jealousy is enough to make us angry. Its not because of you. Its the anger in me. We don't expect people to tip-toe around us. All I ask is that you never forget how lucky you are.

The greatest fear we face is the fear of forgetting. As life goes on and we continue to become more normal, how will we still honor the life of our daughter? Its a dilemma that I couldn't have expected when we first began this journey: Feeling normal and feeling good feels bad. I feel guilty about many of the things I enjoy now. Nicole and I might share a nice evening out and have fun, but in the back of my mind I think, "the only reason we can go out is because our daughter is no longer in the hospital." It feels bad to feel good.

So when people ask, "how are you doing?" I don't often have the energy to say what I've just said. We're doing okay. We make slow progress in healing, but it is progress and it is healing. We are most of the time able to put on a good face, and our lives function nearly normally again (not quite 100%). We're not stronger or weaker than most people. There are still a lot of bad days. There are some good days. Its very hard, not much easier than it has been.

Thats the shape it takes.

Droopy music

For many weeks after Evie died, I was way too fragile to listen to sad music. I didn't think I ever would be able to again! This doesn't seem like a big deal, but most of my music collection is filled with artists who are prone to focusing on the dark side of life (see Neil Young, Lucinda Williams, Emmylou Harris, Ryan Adams, Johnny Cash, and so forth). A lot of the songs I used to love are filled with themes of death and love lost, and up until recently my favorite music just made me feel worse. But now, it kind of makes me feel better. The lyrics mean more to me, and sometimes it's reassuring to have someone else express how I feel in an artistic way. I'd like to share this verse from Emmylou Harris' Hour of Gold:

The world will be my witness
when they excavate my heart
and find the image of your face
imprinted there like some Shroud of Turin
that neither time nor tundra could erase

Good stuff.

Another thing I was unable to do was watch sad or violent TV shows or movies. I thought that actually would be good for me, to have violence out of my life. But, alas, I finally popped in a disc of Season 6 of 24 that I got from Netflix and now I'm once again addicted to the most violent show ever on TV. Darn you, Jack Bauer.

What a difference a year makes

Today marks 3 months since Evie died. That really isn't very long, but yet it feels like ages since I was still holding out hope for her. All the while I realized that she may not make it, but I knew that if she did I would throw her the biggest party after she came home so everyone who cared and prayed for her could finally meet her. Sometimes I just can't believe that I'm not planning that party.

This past weekend also marked one year since Matt and I found out I was pregnant. Realizing the significance of this made me reflect on the past 12 months and all that I've experienced. The standout moments (no surprise) are Evie's birth and death. Though her death is the most devastating event in my life, her birth is still the most important--her death does not overshadow it in my memory and I am so thankful for that. Sometimes I feel like I've lost everything, but the truth is nothing can take that amazing day away from me and it will always be mine. I guess I find it kind of strange that the worst year of my life also contains the greatest day.

Her very first birthday photo (it's not an easy feat to be cute from the very beginning, but I think she accomplished it like a natural) :

Continuing Adventures

Throughout our whole ordeal with Evie, we simply wrote her blog from the heart. After it was all said and done, many had commended us for the way we presented her story and shared our own inner life. While being praised for quality writing was not at all consoling after the loss we experienced, we are glad that by presenting Evie's story that so many felt close enough to us to care for us. Many were interested and concerned enough to journey with us through our tragedy, its fair that people also have the opportunity to journey with us through recovery. Our lives go on, and so we hope to share some of that here. We'll try and share some thoughts, stories, pictures, and news from our lives. We're just that interesting...

A time to blog

Before our daughter was born, I didn't dig blogging very much. I had one, but I never wrote on it. Matt was more into it than me. But after Evie got sick, there was something that felt good about writing out what was happening--to "tell our story" was cathartic. I'm hoping some periodic writing will have the same effect now that we are grieving her loss. Also we can use this to post pictures and write about all things in general to help ourselves remember that our life is going on.

If you know us you probably know the story of our daughter's life and death, but if not we had another page just for her which was http://www.eviemarie.com/.