March 2, 2012


I’ve been sharing mostly photos lately and thought I’d take a moment to share a little of my heart and where I am.  Three weeks from today, Clara will turn one.  What a year it has been.  I’ve found myself deep in reflection the last couple of weeks (it’s what we teachers do – reflect) and despite the reality of the fact that Clara is doing fabulously, that spring is just around the corner, and that we will soon be celebrating her miraculous first year of life, I am finding that I’m just a wee bit melancholy. 

I think that some of it is typical for parents who have a child turning one.  It is an exciting and special milestone, but it also marks the end of baby-time and since so much of the first year is spent in a bit of haze and exhaustion it never really seems possible that they’re already turning one.  I couldn’t be more excited that we’ll be celebrating Clara’s first birthday with a baby who is living and thriving, growing and developing.  But there is still a part of me that is looking back over my shoulder and grasping for some of what I missed.

 I missed those first three months of tiny newborn snuggly-ness.  The brand new baby smell was exchanged for the scent of hospital grade cleaner and disinfectant.  Instead of worrying about how many hours of sleep I got in a day, I worried whether my baby would make it through surgery, would come off ECMO and ventilators, would wean from morphine, would learn how to eat, would live….  I’ll never get those first three months back again and I’m kind of missing them now.  The months that followed, when Clara came home, were anything but normal.  I have never in my life thrown my heart, my soul, my spirit and my physical body so wholly into something.  All I did, all I thought about, all I became was about helping Clara eat, sleep and grow.  I was consumed by worry for her, much of the time, and felt alone and isolated both due to germ prevention and to feeling like there were few people who understood the intensity of the life I was living.  I wouldn’t change a thing about it.  Clara is healthy and happy now because of every second of that angst and every ounce (pun intended) of that determination.  But I can’t help but look over my shoulder just a little bit, and want some of those days back too. 

It’s been an incredible year.  While we still have a few challenges ahead of us, Clara is, for the most part, well now.  It’s hard to really believe that, and I find myself just letting out deep exhales and saying to myself, “Is this really over?”  I talked with a good friend yesterday who is a cancer doctor and as I described how I have been feeling she said that a similar thing happens with cancer patients. Once the treatment and the chaos and the panic of survival mode has passed, when things are all okay again, that is when you finally have a chance to begin to grieve a little, to process what you’ve been through and to feel some of the emotions from the intensity of the journey.  And that’s where I’ve been.  Just when it seems like I should be the most joyful, the most content, the most thankful, I am filled with some sadness and grief for all that has happened. 

There are reminders all around me of where we were this time of year last year – little things like daffodils blooming – that take me back to our fear and uncertainty before Clara was born.  A year ago I didn’t know what was ahead, or how we would make it through.  No amount of preparation could have truly prepared me for what the last year looked like.  I never really thought that we would be having conversations with doctors about her not surviving.  I never really thought that she would go on ECMO.  I never really thought that she would have heart failure.  I also never would have thought that we would be surrounded and carried by such an incredible community of friends, family and strangers, united in God’s love.  I never would have thought that my tiny sick infant would be changing people’s hearts across the world.  I never would have thought that we would learn all the lessons that the past year has taught us. 

Don’t misunderstand me.  I’m not complaining about the past or feeling sorry for myself.  I know that we could be celebrating Clara’s first birthday by her graveside and I could not be more thankful for God’s mercies in our lives.  I’m just longing a little for what wasn’t and trying to find a balance of looking ahead with joy and excitement to what I know will only get better while still remembering what we’ve been through, the lessons God has taught me, and the ways that this has forever changed my heart. It is a unique balance, this honoring the past, living in the present, looking to the future.  Not wishing away a second, not waiting for an unknown ahead, not forgetting the steps that have brought us to right here, right now. 

So, that’s where I am.  How about you?  Have you been through crisis and come out on the other side a changed person?  Have you longed for something that you know couldn’t have been and then felt guilty for not just being thankful for all that is? 

From Isaiah 43:

“But now, this is what the Lord says, he who created you, he who formed you: Fear not, for I have redeemed you; I have summoned you by name; you are mine.  When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you.  When you walk through the fire, you will not be burned; the flames will not set you ablaze.  For I am the Lord, your God…..Forget the former things; do not dwell on the past.  See, I am doing a new thing!  Now it springs up; do you not perceive it?  I am making a way in the desert and streams in the wasteland.”


  1. Beautifully written... Never feel guilty for whatever you are feeling. God loves you as you are. Grace. Grace. Grace. What a precious gift. I love you, my daughter, and am so very proud of you.

  2. God is so good. I think it's okay for you to have these feelings; I imagine they are 100% normal for people in your situation. I am one of the strangers that prayed (and continues to pray) for your sweet family. Your experience has been a testimony to me of how God carries us when we can't carry ourselves. I am so thankful the miracle that is your baby girl :-)

  3. First, let me say you are not alone in this. My son Owen will turn 5 on Tuesday. He was born with right-sided CDH and was in the hospital for about a month. While his journey was different than Clara's (he didn't need ECMO) we still experienced many similar things and I had many of the feelings that you are having.
    I must say it does get better/easier over time, BUT, I still remember the anniversaries (when he was diagnosed, his birth, his surgery, the day he was extubated, holding him) like they were yesterday.
    You are very right, you must let yourself grieve for what you missed because even though you are blessed with Clara and her health, you still missed out on many things that as a mommy you longed for.
    For quite awhile I thought so much of what happened with Owen and then also other babies that were suffering from CDH. I went to see a Christian counselor for awhile and that helped a lot. And now, five years out I can tell you that there are days that I don't even think about what happened and others I can't stop. Owen struggles with asthma so there are certain times I remember things more than others if he is strugglin. He also has a small bald spot on the back of his head from a bed sore in the NICU and when his hair is cut short and I see that spot it makes me sad!
    Anyway, I just want you to know you are NOT ALONE, keep your eyes on Christ, He has ordained your days as well as Clara's and blessed you with this journey.

  4. I am a stranger who has prayed for your sweet girl. We are friends with Ben Hodge in Nashville. We had twins born in August 2010 and our son Thomas passed away in December 2010 from complications from a heart defect. Our other son James is doing well despite being a preemie and having struggles of his own. I have so many longings for Thomas and all that I missed with James between our weeks in the NICU and the month that I was away from James while i stayed at the hospital with Thomas. When we were celebrating James' first birthday it was full of mixed emotions. We were full of grateful feelings of thanksgiving, and sadness of all that will never be and all that we missed. I just think as mother's God gives us what we need minute to minute to keep breathing. Although you already know that when you saw Clara fighting for life. I hope you have a WONDERFUL birthday party and I look forward to pictures of such a special day. I wish with all that I am we could have celebrated in the same with our sweet Thomas. I take comfort that he is celebrating in ways I can't imagine with our Lord. God bless.

  5. You've been through such stressful times this past year, that now that the stress has let up some, you don't know how to feel. I look at that sweet baby and I'm so thankful that GOD spared her for all of you who love her so much. That precious little face has brought so much joy to so many people, even strangers like me. The LORD has truly blessed us. Your part in this miracle couldn't have been done by anybody else, the LORD picked you, all your sacrifice, hard work and determination for this baby has paid off, it's what you were put here for. Someday you will be able to see the big picture and see what you and your husband have done with GOD's help !!

  6. i so relate to the grief, gratefulness and reflection of this post. i also LOVE LOVE LOVE that verse. i send it to people when they are hurting, but i think i need to paint it on my ceiling or something. :)


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