07 June 2010

so much to say

The past several days have been the oddest mixed bag of hope and of joy, of grief and near despair. We've felt positive and assured, and then we've felt like nothing could possibly lift our spirits. It's a wicked seesaw to be on. I've desperately wanted to feel normal and to maintain my excitement that we're having this beautiful child, and yet ...

And yet.

A steady stream of good days and good moments make the appearance of bad ones all the more surprising. They sneak up on me like a thief, and cause me to search despairingly in my empty hands for things on which I thought I had a grip: hope, and faith that all will be well. Before I'm able to identify my emotions or determine where they're coming from, I find I've become frustrated, snippy, and short-tempered. On the bad days, I hate who this is turning me into.

gifts

Determined not to let the diagnosis rob me of my genuine excitement, nor suppress the nesting instinct, I've prepared items for the nursery. I've hung up his clothes in the closet, and I've completed my registry (I think). This past weekend, I bought wood blocks of letters that spelled out his name and I painted them. I sing to him in the mornings and talk to him all day, and I smile whenever I feel him move, stretch, and kick. Sometimes I imagine his kicks as a baby form of Morse code, a way of communicating with me: Chill out, Mom. It will be okay. I'm going to be fine.

I hope that's what he's saying to me. I hope that he's right.

More than knowing that my child will be facing tremendous challenges in the first weeks, months, and years of his life, I'm grieving the loss of companions who have been mine for this journey thus far. Before I was pregnant, I knew I wanted to seek the care of midwives when it came to pregnancy and childbirth. For many reasons, it's a model of care I believe in. More than our caretakers, these midwives have been our advocates and supporters. They understand this is deeply personal to us, and it is personal to them too. I looked forward to having them attend this birth, to meeting my son in the comfortable birthing suite at their facility.

Now 23 weeks pregnant, I need to find a new provider, someone who is currently a stranger to me. Some think perhaps that this shouldn't be a big deal to me (since as a mother, I should naturally want to do what is best for our baby -- which I do), but I am losing something real here -- something deeply important to me, and I just don't know how to come to peace with this, or how to reconcile myself to another abrupt change in our plans. It isn't something I can easily dismiss.

gifts

All the what if's? plague me. Questions arise that if voiced, many would be quick to dismiss, telling me I can't dwell on things like that. I don't dwell, but denying the questions exist doesn't help either. They brew and they bubble inside me, and while I don't roll out the welcome mat for them, their presence lurks nearby like an unwelcome stranger. And then I turn into that person I hate again. My own company becomes unbearable to me, and my behavior hurts those around me.

What if he's one of the 5-10% of children that doesn't make it after surgery? What if my body has betrayed him? What if, in having another child, we find he or she has the same condition?

Many are quick to preach hope, and not without cause. The odds are in our favor with an early diagnosis, and with finding more than nine out of ten children living healthy, normal lives after a series of procedures to correct the issues present. We are in one of the best possible places we can be when it comes to the treatment available for the tiniest of hearts. In the weeks since learning the diagnosis, we've been connected with other parents whose own children were diagnosed with serious congenital heart defects (none of them the same as Ewan's, but still plenty serious) and have gone on to become thriving and active children. These are the only people who can really understand what we are and will be going through.

E - W - A - N

And then there's you. Praying for us, adding our request to the prayer chains at your churches, sharing it with your friends. We have people praying for this unborn child from coast to coast, and in countries across the world. Like my sister says, "We're going global!" There is so much love coming our way, so many advocating for Ewan's life, I cannot comprehend it. I want each of you in the same room, and to embrace every one of you tightly. I don't know how to say thank you. The words are a feeble representation of the heartfelt gratitude they are meant to convey, and yet we all know that even the most powerful and perfectly chosen words utterly fail in their reach at times like this.

Even so, what you say has not failed to touch our hearts. Please know that. Your words are a blanket and cocoon, a lifebuoy in a raging sea. I cling to them, wrapping myself in them over and over and over.

I know we will get through this, and I know there is hope. I know there will continue to be those days that are good and those that are not. All we can do is take it a minute and a step at a time, praying through every moment, being open to what comes, talking about everything. We will breathe in and out, stepping again, and give ourselves and each other the grace that we need to be where we are.

Much love,
k

16 comments:

  1. Praying for you, friend! Much love!

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  2. wow...I am praying for you...thank you for sharing your heart and your struggles with us! you are loved!

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  3. When we were in the adoption process our family coordinator changed just a few months before we were matched with our son. It was so hard for us. We went from feeling like we were known and cared for, to feeling like a file in a stack of papers. I know the situations are very different, but I can understand your feelings about having to change from your midwives to other doctors - that is a hard change. I'm keeping you in my prayers.
    *with love*

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  4. i love your real story, all the ups and downs of it. keep living. this is so beautiful; He is doing something so incredible in you.

    is it okay for me to be so excited for you, to congratulate you? i'm so amazed...

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  5. My wife and I had difficulty conceiving, but when we did, we were thrilled. We were going to a birthing center with midwives, but then when they tried to find the heartbeat they couldn't, and so we had to go to a regular ob/gyn, who did an ultrasound and told us the devastating news: our baby had "quit growing" at about 6 weeks and had died. The miscarriage was traumatic and my wife had to be rushed to the hospital. Needless to say, our dreams of a pleasant birth of our healthy baby at the birthing center with midwives we knew didn't happen.

    My wife definitely understands the loss of having to switch to doctors/hospitals--you are in our prayers!

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  6. I hope my comment didn't sound like I meant I knew exactly what you're feeling. I know I don't. I just meant I could kind of identify. ..Sorry.

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  7. i wish i had the just-right words. you already have figured out that those words don't exist.

    but i can keep you company (to whatever extent that's possible from so far away) and i can let you know that it doesn't matter to me how angry or bitter or withdrawn or whatever else you may become. i won't look away. i'll keep listening. and i won't try to make myself more comfortable at your expense.

    have you ever read any of jane kenyon's poetry? i was reading it tonight and i thought of you. it's probably a bit much to share this with you in your comments section, but who ever said i had any common sense?

    Let Evening Come

    Let the light of late afternoon
    shine through chinks in the barn, moving
    up the bales as the sun moves down.

    Let the cricket take up chafing
    as a woman takes up her needles
    and her yarn. Let evening come.

    Let dew collect on the hoe abandoned
    in long grass. Let the stars appear
    and the moon disclose her silver horn.

    Let the fox go back to its sandy den.
    Let the wind die down. Let the shed
    go black inside. Let evening come.

    To the bottle in the ditch, to the scoop
    in the oats, to the air in the lung
    let evening come.

    Let it come, as it will, and don't
    be afraid. God does not leave us
    comfortless, so let evening come.

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  8. Loving you and Ewan, and praying for you both. . . all the way from Singapore! =)

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  9. Thank you all again for your words, and for your prayers. I mean it -- your words are such tremendous comfort. I can't imagine doing this alone -- I wouldn't make it. I just wouldn't.

    Nadine, Shay ... I love you.

    And yes,Kelly, I do believe congratulations are most appropriate. Something really wonderful is happening here.

    Tea, I can completely understand what it is to relate to someone else is going through via the lens of your own experience. I didn't take any of what you said with the least bit of offense -- on the contrary, I can appreciate that you have been through a similar scary transition that left you feeling much the same way that we are right now. I thank you for your empathy.

    Devin, ugh ... you too? I'm finding that this sort of mid-pregnancy switch isn't at all uncommon.

    Terri Thank you for being you and for assuring me that no matter how bad this gets, you won't leave me hanging. Oooh ... yeah, that Kirsten girl? She used to be kewl and then she LOST IT. And thanks for the poem. It fits.

    Rebecca Many thanks and much love to you, my friend. I wish my arms could reach to Singapore!!

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  10. Loving you today.

    When I was in seminary, one of my profs talked a lot about "sitting in the weeds" and letting others sit in the weeds with us. I love that you're letting us all, even inviting us, to come and sit in your tangled, weedy place right now. It's hard--weeds are so ugly and we want to pick them instead of sit in them and let it be. But the weeds are also true--the truth of our hearts and our lives. So I'll sit with you as long as you need people here.

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  11. I stumbled across your blog and I have been following silently. I just wanted to add that I am praying for you.

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  12. I stumbled across your blog and I have been following silently. I just wanted to add that I am praying for you.

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  13. Your words speak wisdom beyond years. You're not blindly optimistic, and you're not letting the "what ifs" drag you down into despair. You are exactly where you need to be right now.

    Keep holding strong, and the "prayer blanket" of everybody here (vocal and unvocal) will continue to wrap you, James, and Ewan with love and support.

    [:: Sean ::]

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  14. Kirsten,
    I read this the other day,
    and now tonight , the posts linked up in your header.
    the ultrasound picture is just radiant love.

    do you know how you bless.

    I pray for your Ewan, for everyone and everything that comes into his life every second he is held in your womb, and for every second when the world is honoured with knowing and loving him.


    When I was pregnant with my unexpected fifth and had to go for an amnio... I remember feeling so so shattered , even in the unknown. And bitter. It still sits in the cracks of my heart and mind. This doubt. This selfishness. This fear.
    You are such an inspiration.

    may you be held in His love in all of your moments. In the all of the fears and unknowing.

    love to you.

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  15. Hello, my friend.

    I'm not sure what happened on your last post ... I wrote a comment but it doesn't seem to have appeared. I hope you received the love I sent to you there.

    And now, here.

    I've always loved the way you fully inhabit your experiences. I was in the car driving the other morning and thinking about you in this respect. I was thinking about your Job experience ... how the warrior princesses descended on you in Bellingham to rally and love you ... and how fully you embraced loving and being loved by James when God brought you two together.

    You have always fully embodied all of life's experiences and been unafraid to share the truth of those experiences here.

    I love that about you. It gives others permission to do the same ... in the valleys and on the heights.

    So it makes sense to me that you would be sharing here what you have. For one of the most intimate experiences in all of life, and for one of the greatest imaginable loves possible in the world, and for something to be happening in the midst of it that is so unexpected and painful ... it just makes sense that you would be feeling all the lows and highs that you are and that you would come here to spill about it all.

    I'm glad you do this.

    I love you.

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  16. It's only natural to mourn the loss of the life you thought you'd have. The life you will have with Ewan will be different than you thought it would be and I can't imagine that it would be a perfectly smooth transition from one expected reality to the next.

    Thinking about your family and praying for all of you...

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