02 June 2010

keeping it real & raw.

I wonder if I'll regret writing this with all this hanging around me, the ink still fresh and wet on this news, the unfolding reality giving rise to an exponentially increasing number of questions, as well as new and complex feelings. My emotional landscape is changing constantly and dramatically, ranging from sharp peaks to deep valleys with a few muddied level places in between. At a time like this, everything feels volatile, and change is the only thing that is a constant. None of it feels real.

Yesterday's fetal echo confirmed what the first doctor suspected. I'm not going to name the diagnosis here because I don't want it to show up anywhere on a Google search (even if it's the 10,394th page listed). There is a whole range of fetal heart defects that exist, and this one exists on the side of the range that, if your baby has to have a heart defect, you definitely don't want to land on. It is severe. There are holes in places there shouldn't be. There are vessels a mere fraction of the size they need to be.

Unless a miracle happens between now and his birth, Ewan will be spending the first weeks of his life in a hospital. He will need multiple tests and operations to deal with these abnormalities. Defects. Whatever you want to call them. Whatever the label, I hate them.

I can't tell you how much it hurts to know that I won't be able to take him home with us. That I will need to leave the care of my midwives more than halfway through my pregnancy and deliver in a hospital. That within hours of his birth, he will be transferred to a different location while I recover from labor and delivery. That in his first weeks of life, I will need to get in my car and drive to the hospital to see him, to touch him. That after he's born, he won't immediately occupy the room we have set aside for him.

I know he will be well cared for. I know these steps will be necessary if he's going to live and thrive. I know we are fortunate to be so near a facility that can handle this, and that we live in a time where babies who wouldn't otherwise have a chance of making it can grow and thrive thanks to some extraordinary advances in modern medicine. I know there is nothing I could have done to change this. According to the doctor, these things "just happen." No one really knows what causes it, only that it's something that likely started within the first three or so weeks of my pregnancy.

None of this makes it any easier. Believe me, I wish it did. It would make things easier on all of us; we wouldn't be huddled and weeping in the corner, and you wouldn't be shifting in your seat, searching for the right words or wondering if it's okay to hug us. We are walking a path no parent wants to walk, and having to make choices no parent wants to make.

I know that our feelings will continue to shift, change, and evolve. I know we aren't the first to experience this. I know that we will experience substantial hope, and that we will find peace and laughter in unexpected moments. I know that our son is a gift and a blessing, and already a joy to his parents. But it still hurts in a way no earthly tongue can describe, and only a supernatural and heavenly power can change or heal that.

This is a portion of what I wrote to my dear friend Christianne this morning:

I am jealous of every parent who's never gotten bad news, of every parent who has had a healthy, normal baby, of those who have never had to navigate this path, of those who have not had to weigh the sometimes tremendous cost of choosing life when its beginning looks so bleak and challenged. I've heard some of the traditional platitudes that inevitably come forward in the speech of those who mean well: things like "God doesn't give us anything we can't handle." Pardon me, but what a load of bull. Maybe He allows these types of trials precisely because He already knows we can't handle it -- that we would need to lean on Him chiefly, that all our dependencies would be on Him and not on what we could do, that we would humble ourselves and ask for help from those friends and family that surround us and stand with us. If there's one thing James and I are strikingly aware of, it's how completely helpless we are in this place. We can do nothing to effect the change we desire.

I'm confident of God's infinite love for this little boy. I know His heart for children. I know this news does not surprise Him. Sometimes this knowledge is a tremendous comfort, and at others, it makes it all the more difficult to reconcile with the truth that I'm waking up in a world where babies are born with severe heart defects and don't get to go home with their parents after they're born. And somehow, inexplicably, the world keeps turning and the birds keep singing when the sun comes up.
And so here we are, at the head of a path we did not expect, wondering what kind of story will be told in the steps we take.

Lord, have mercy.


  1. Hands are wet as they type. Dear Lord, in your mercy, hear these prayers. Be near, be present, let your love flow freely to cover, heal, and touch all that needs your healing hand.

  2. for what it's worth, sweet Ewan Eliezer and his heart are both in my thoughts and prayers these days. I can't fathom this weight God has put on you, Kirsten. May God bless you in ways you've never dreamed.


  3. Words are never enough in moments like this, and even if the right ones could be found they cannot take the pain away. So I don't come with many words tonight, just the offering of my prayers to our God who hears, who sees your tears, who holds you all in His hands.

  4. I'm so sorry you are going through this! You're right, I have no idea what to say. I am praying for you. May GOD give you the strengtha and peace you need, and give you your miracle.

  5. My dear friend,

    There is not an easy word or trite platitude that I can write to you here. All I can say is

    "I am praying for you and your family"

    I hope that it is enough. And I hope and pray there are people of strength around you who are standing with you in this time.

    Our God is a God of miracles, and he might just have one for baby Ewan in utero. That is my prayer.

  6. Kirsten, I will be praying for you. I'm so deeply sorry for what you are going through. Your sister in Him, Ginny

  7. I don't even know what to write on here...I want to be encouraging and let you know I am praying for you all...I want to thank you for sharing your heart and emotions with us so that I can know more how to pray for you and your precious little guy! I am praying for miracles! love you!

  8. Lord, have mercy indeed...

    Thank you. For letting us in. For letting Him in.

    He sees you. He is near.

    If there is anything I can do...

  9. Agreeing with those here in prayer and love for you...

  10. Kirsten,

    Even our Lord Jesus, truly God and truly man, says in Matthew 26, "My soul is very sorrowful, even to death...And going a little farther he fell on his face and prayed, “My Father, if it be possible, let this chalice pass from me; nevertheless, not as I will, but as thou will.”

    I find that so comforting! Christ truly understands our human condition and can sympathize with us.

    Thank you for sharing these peaks and valleys you are going through. I have thought and prayed for you all daily and will continue to do so.


  11. Kirsten and James,
    Love you guys! Hang in there! Our son has autism. I had a miscarriage on our anniversary too. I want you to know that I would not trade all the blessings and joy that Hayden has given us, even though it has meant going through the worst pain we have ever experienced. God is faithful and he will carry you through this!
    Kimberly LePore(Melinda Ragan's sister)

  12. “Behold, I am of small account; what shall I answer you? I lay my hand on my mouth." -Job 40:4

    Love and prayers for the three of you.

  13. My heart positively aches for you. I am so, so, so sorry.

  14. Kirsten,
    I will be keeping your family in my prayers. I will pray for God to continue to hold your little one in his hands and make him healthy in all ways. I know there is nothing I can say that will make it all better, but know you have one more person praying with you and for you.
    Love to you.

  15. I've been following your blog quietly for a time now. I started reading just before the Becoming Catholic series and kept reading because of that series...

    I'm so sorry to read this news. I'm praying for you and your husband and baby Ewan today. May you know God's peace...

  16. I don't know you, just found your site via a wonderful Internetmonk comment you posted a while back. I am praying for you, your husband and baby Ewan.

  17. Kirsten & James,

    We know this road all too well and our souls plea to God for a good resolution to this journey ahead.

    May you find peace in the oddest times and may God's hand rest upon Ewan and give him life abundantly.

    [:: Sean ::]

  18. You know I got you all in my prayers! And I hate that phrase "God doesn't give us anything we can't handle." It is a load of bull! If we could handle it... we wouldn't need Him.

    Take time to grieve dear friend and process all this. And pay attention to those wee moments that God wants to reveal HIS goodness to you all during this time... easier said than done.


  19. i'm here. i'm listening. i'm sad.

    love to you,


  20. Not shifting in my seat, but searching for words that express my heart and deciding that they probably don't exist or, if they do, I cannot find them.

    But this is what I know: God holds Ewan in the palm of His hand. He holds him tightly and won't ever, ever, ever let him go.

    He also holds you. When you can't handle it, you're still held. When you're helpless, you're held. When you're worn from the weeping, you're held.

    I'm with Terri . . . I'm sad.

  21. Each of your comments means something special to me, because it represents a heart that hears and cares. I want to hug each of you.
    Thanks to all who pray with us, and weep with us.