Tuesday, 28 August 2012

My Heart.

I can’t even begin to describe the emotions I’m feeling tonight, but I’m sure going to try!  Holly has a new heart.  It was the first thing I learned this morning.  I was instantly thrilled for them, and overwhelmed with the shock of how quickly one was found.  Within minutes I was crippled with the realization that another family was losing their baby, one they would not have had much time with.  I felt so torn.  I wanted to celebrate and break down in tears all at once.

As the day wore on, I thought a lot about Holly going back into the OR.  I felt panicked as I thought of myself in Angela’s shoes.  Was I ready to give my sweet girl over to Dr. Ross again?  The first time I handed her over, I hardly knew her.  I knew that she was beautiful, that she felt incredible in my arms, but I didn’t know her like I do now.  Since then, I’ve learned what my little girl looks like when she smiles.  I’ve learned that she feels safest when she’s wrapped tightly and no one can harm her.  I’ve learned that she likes to be held in the cradle hold and not on your shoulder, that she likes you to angle her so that the soother will stay in her mouth while leaning against your body.  I’ve discovered what it feels like to be stared at in public, but also how amazing it feels to proudly introduce her to a friend.  She’s taught me that it doesn’t matter if people stare at the tube hanging out of your nose or the pudgy tummy that doesn’t fit into your pre-baby clothes!  Hope has taught me that I’m stronger than I ever knew, that I can conquer any battle I set my mind to.  My parents always told me that I was stubborn, I just never realized I could be stubborn about survival as well.  I’ve learned from Hope that we can love God with our entire hearts, but have nothing to say to him.  That although I never felt angry with God, I still wished he had given Hope a whole heart.  I sometimes wonder why He allows Hope to be poked 15 times before an IV line can be placed, why she clotted, why her belly is distended and why she had 2 line infections.  Sometimes I would look into her pussy eye from her blocked tear duct and wonder, “doesn’t she have enough things to make her uncomfortable?”  Yet, through some miracle, I still trust Him with her in the end, completely.  So, am I ready to hand her over to Dr. Ross again?  No, but I will and not because I trust Dr. Ross, but because I trust God’s plan for Hope’s life.

Later I started to think about the bond I have with Angela and Sharla.  I don’t know a lot about their past, I don’t know either of their middle names.   Yet, I still feel incredibly close to them both and deeply cherish them.  I felt sad that I had talked to Angela through the entire journey with Hope and Holly.  We had compared treatments, medications and challenges.  It was difficult to realize that Holly no longer has Hypoplastic Left Heart Syndrome, she has a whole heart!  I wondered if I would feel more alone in my journey without my HLHS buddy?  Then I thought of Sharla and realized that her and I never shared the bond of having babies with the same heart condition.  The bond we all shared was the journey we had been through together, not the different heart conditions our children had.   We are all connected by the love we have for a child we carried and delivered with a broken heart. 

I can’t say that I’m sitting here tonight feeling powerful or strong.  I feel more like a little kid, hiding under my bed in a thunderstorm.  I don’t understand why Hope’s IV was not successful tonight, I don’t know why she has to go to the OR tomorrow or why our journey is taking us back to the ICU instead of back to our house.  I’m tired of sleeping alone, and being torn away from Sadie all the time.  I hate missing out on her smiles and her giggles through out each day. 

I stood in the ICU today; 6 failed IV’s, the news that we were headed back to the OR, about to be moved back to the ward and Hope asleep from pure exhaustion.  My mind was blank, I wasn’t really thinking about anything.  The nurse commented on how calm I was, and wondered if I was always so calm.  Calm, not the word I would use to describe myself.  I knew in that moment that I was covered in prayer, that all around the world people were praying for my girl.  Although God was not answering our prayer to find IV access or to get direct answers about Hopes health, He was still giving us peace.  Isn’t that what we truly needed, and the other things we only wanted?

Tonight as I sit on the horrible bed in Hope’s hospital room I finally realized something.  There are a lot of things I want, but only one thing I need.  I need Jesus in my life.  He is the only constant through this all, the only thing that makes sense in this crazy and confusing world.  I don’t know why he allowed Hope and Holly to be born with half a heart.  I’ll never understand why he took Lincoln home so soon.  But I know one thing for sure, He loves me, and that’s all that really matters anyway.  


  1. Thanks for sharing your heart, and being so transparent with us all who read your blog.
    Can't imagine what you are going through, the feelings, emotions, the disappointments, the discouraging news, the up, downs, normals.....
    I am sure that you miss your Sadie, and Shawn, and the life you had before all of this, but as you said....you will never understand why your little Hope was born with 1/2 heart, or why she has gone through so much, God does and wow His plans are sure not yours.
    May God give you the strength to stay focused on HIM. The lessons we learn through all these trials, help us to go through the rest of our lives remembering the Faithfulness of God.
    May He heal your heart, heal Hopes heart, be near you family, be with you as you feel alone, be your Rock, your strength, your Hope, your Sheild and restore your faith in all the His is, and Who He is.
    Great plans for you, and your family are ahead! God's ways are not ours, for sure.
    Praying for a miracle! Praying for so much more, but for now asking God to give you what you need, and give Hope good health. Praying for the Dr's to be used by Him to work His miracle on your little girl, and praying that you feel the peace, the love and support of His people and Him through every step of this journey that has seemed to be so long.
    Blessings to you! Thanks for sharing where you are at today!
    Love you amy!

  2. I read this post and realized that the little I have learned about faith has been learned through quite an easy journey. One thing that I have found to be true, the greater the conflict, the greater the blessing. Blessings on you and your family in Jesus' Name

    Jesus, we trust in You for healing, for health, and for Your Grace and Mercy.

  3. So many things we will just never understand about Our Lord...but i will keep praying for peace and health and for you to feel God ever present.

  4. Hi Amy,

    We have never met, but we have many mutual friends/connections (Mark & Laurel, as well as Joel Kletke and Kristen Mitchell-all of whom we connected with in New Zealand. I have been quietly following Hope's journey on your blog since January of this year, and felt compelled to write to you today to let you know that prayers are being uplifted for you, Sean, Hope, and Sadie from New Zealand. You are an amazingly courageous woman with an incredibly beautiful heart. Since reading this post in the morning, you and your family have been on my heart all day. Continuing to pray that the medicine currently being pumped into Hope will work in wonderous ways, and for God to sustain you and the rest of your family as this journey continues.