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Bennet’ Story pt 3- The Day He Got his Zipper

I know it is time to finish this story for you all. It was so difficult to write Bennet’s Story Part 1 and Part 2 that I just couldn’t bring myself to write this last one. When I recount my memories it is like ripping open a wound that just won’t heal. And yet, when I allow myself to look at my memories in detail, I am overwhelmed with how much God’s grace covers our entire story. It is like the Lord is saying “See? Remember how that felt? How that day was? And now you see how I carried you? How I comforted you?” And then I have renewed strength to face tomorrow. And so I continue to share our story….

The time between Bennet being airlifted to UCLA on Friday, August 25th, 2012 and the day of his surgery, Tuesday August 28th, 2012, was a blur. But these are the things I remember very clearly:

I remember the only thing that would soothe my baby would be my hands upon his chest and his head. The nurses would freak out when he would get agitated because all of his STATS would go crazy, but the moment I laid my hands on him he would calm down. I would stand hours this way, as my back ached and body started to weaken because I had just given labor. But I would continue to lay my hands on my son so he would know I was there. Bennet1

I remember driving past the Getty museum everyday on my way to hospital and thinking about our Anniversary date when everything was perfect and Bennet was still safe and pain free inside my tummy. I would mourn for that Joe and Christie. The Joe and Christie of “before” HLHS. I will now always categorize my memories into two … Before HLHS, and After HLHS.

I remember my amazing Joe walking in front of me from the hotel to the hospital the morning of the surgery. He was carrying my diaper bag, my breast pump bag, and my cooler, because he wanted to lift the load off of me. He never said that, but I know that is why he insisted on carrying my things. It was something he could do for me when there was nothing anyone could do. And his shoulders were so heavy….I have never seen such a burden on his strong shoulders before and I will never forget that sight. That man kept his hand on my shoulder or around my waist through the entire experience. He made my feelings and weaknesses a priority over his own every single day we were in the hospital. That man was filled with God’s strength. That man is my hero and because of him our marriage is rock solid.

 

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I remember meeting our surgeon before the surgery to discuss the procedure and to sign our babies life away so that the doctors could give him the one shot he had at  having a life. I remember hearing the terms: “possible brain damage”, “renal failure”, “he has a a lower chance of survival”, “ECMO”….. I couldn’t even breath as Joe signed the release. And then one Nurse Practitioners spoke to me as a mother. And even though she saw many moms going through the same thing I was, she looked at me the way I needed to be seen. She offered to work it out so I could hold my baby one last time before they took him. I hadn’t held him since they took him from me the day after he was born.

I remember a group of people coming over to hold all of Bennet’s breathing equipment while I held him and I felt bad to cause such a stir, but the second I pulled my baby to my chest, his heart rate and breathing steadied, his oxygen saturations went up and for a moment it was just him and me as I whispered in his ear that Jesus was with him and that he would never be alone. I told him that I wanted to keep him but if it was too hard for him, he could go be with God and I would understand and be happy knowing he was happy.

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Our Pastor and close friend praying over Bennet as I got to hold him. Precious, precious memory

I remember that being the moment that I knew beyond a shadow of a doubt that my faith was real. That I really truly believed what I have always said I believe.  Because in that moment I knew that God was good and that His plan was perfect. Not only if He let Bennet live, but even if he took Bennet home.

“You never know how much you really believe anything until it’s truth or falsehood becomes a matter of life and death to you. It is easy to  believe a rope to be strong and sound as long as you are merely using it to cord a box. But suppose that you had to hang by that rope over a precipice. Wouldn’t you then first discover how much you really trusted it? … Only a real risk tests the reality of a belief.” (C.S. Lewis)

I remember making sure I sang every single lullaby that I have sung to all my babies so that there was not one thing I would regret if he didn’t make it.

 I remember walking out of the NICU with a crew of people to take Bennet down to the OR. And as those doors opened I saw that the entire hallway was full of people. People that were there for us. People that had watched Joe and I grow up, people who were new friends, people who loved us and didn’t want us to be alone. And as the day went on more people showed up. I am really not sure anymore who all was there that day but I know this: we had people from all over the world covering us in prayer that day and it made all the difference.

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Just a very small portion of the people who sat with us all day waiting. MNM readers, Do you spy Natalia??

And finally I remember our surgeon, strutting into the waiting room 6 hours later like a proud peacock and a smile on his face (We love him!) and realizing before he ever spoke the words, that my son made it through surgery. He survived his surgery! He survived the first step of his very long journey, the step where his odds were the lowest they will ever be. The most crucial, dangerous step….it was behind us.

And now we would begin the fight. We had no idea how long and how difficult this fight would be. But we knew we would fight it. Because God had given us one more day with our boy and for that day and then the next, and then the next we would fight…..

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And that was the day Bennet got his zipper line….

Hey Readers! I am blogging over at A Beautiful Window now and would love for you to follow along. Find me on Facebook, Twitter, Instagram and Pinterest! <3<3 xoxo Christie

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16 Responses to Bennet’ Story pt 3- The Day He Got his Zipper

  1. dolores April 26, 2013 at 4:17 am #

    Tears are rolling down my eyes. There are no words in the world to transport my feelings!
    I wish you all the luck, the strength, the love, the faith needed to walk this road.
    You are doing great and I am soooo thankful for your sharing.
    Last autumn my mom died suddenly. She had a baby girl two years before she had me. For that little baby it was too hard to take it. My mom never told me the whole story, I just know some glances. But reading your story gives me a very little idea of what she had been gone trough…

    • Christie April 26, 2013 at 9:54 am #

      Oh thank you for reading my story! I pray that it can bring some hope others! I am sorry for your loss as well. These things change us forever don’t they? Take care!

  2. Desperate Houselife April 26, 2013 at 8:03 am #

    I can only imagine what that must feel like. I had a family member born with a rare GI condition and had to have multiple surgeries as a baby and before she was even 2. While I don’t have children of my own (yet), I have friends who have told me how they loved their baby while he/she was still in the womb, so to have that moment of joy turn into worry/terror like that must have been awful (not to mention post pregnancy hormones). It’s amazing how perceptive children are. Your daughter sounds like a wonderful girl and it just goes to show what a strong and sensible girl she will become. I am praying for Bennet and your family.

    • Christie April 26, 2013 at 9:56 am #

      Thank you! Its so true! Children are much stronger and wiser than we give them credit for 🙂 We have been blessed by this trial even though it has been beyond difficult. Thank you for reading my story and commenting! 🙂

  3. Erika Vartsaba April 26, 2013 at 11:03 am #

    Thank you for sharing Christie! I was so scared during those Facebook updates on little Bennet’s life. I kept him and you in my thoughts and prayers. You are the biggest inspiration ever! I wish you strength, love and perseverance during your journey! Give a smile and a hug from me to your little Bennet Boy.

    Love,
    Erika from Ukraine

    • Christie April 26, 2013 at 11:13 am #

      Thank you Erika! It is so amazing to know that there are people praying for us all over the world! Your words mean so so much! I will give Bennet a special hug from you today! 🙂

  4. Mandy Lovan April 26, 2013 at 12:43 pm #

    How absolutely heartbreaking and inspiring at the same time. If I weren’t at work, I’d be bawling my eyes out. What an amazing story and little man you have…more importantly, what an amazing God we have. My thoughts and prayers go out for you and your family. I hope you’ll give us an update on his progress and LOTS more pictures of that handsome boy of yours!

  5. Kelley April 26, 2013 at 4:59 pm #

    Part 3 is beautifully written and I read it with tears running down my face.  What struck me most was your description of laying your hands on Bennet to comfort him and how your husband did the same for you.  God Bless You and your family!

    • Christie April 26, 2013 at 6:08 pm #

      I never thought of that! Thank you for Bringing that beautiful description to my attention!

  6. Regena Fickes April 27, 2013 at 7:58 am #

    What a what a way to start the morning. Tears in my coffee and thanksgiving in my heart! Thank you for sharing this beautiful story of grace, strength and courage. I can identify with the realization of faith in our God. I had this moment after my daughters’ death. I was crying and mourning her loss when I suddenly realized that I would see her again! What a blessing. We have a loving, wonderful God! I have only been following for a short time and haven’t had time to visit the older posts. Praying for continued strength and peace.

  7. amber April 27, 2013 at 7:05 pm #

    I just stumbled upon your blog and just read all 3 parts of your son’s story and cried the entire time. I am glad he is doing better now and wish your family nothing but the best! Saying a prayer for you and yours.

  8. Leigh Anne May 2, 2013 at 1:19 pm #

    I read this at work and was trying so hard not to cry!  I have 3 littles and this momma’s heart was breaking reading your story.  Thank you so much for sharing.  Your faith is truly and inspiration!  Was wondering about Bennett’s prognosis now?  Many blessings to all of you!

    • Christie May 2, 2013 at 7:17 pm #

      Thank you for reading our story! Bennet is 8 months and doing really well. I will continue to blog about his progress and some of the complications he is suffering from. He will for sure need one more open heart surgery in a couple of years. Take care!

  9. Sylvia May 14, 2013 at 6:37 pm #

    I read this and thought of my nephew, he went throug this same thing. My heart goes out to you and know all things are posable throug Jesus. I hope that things work out for then best and you see many birthdays from her on out. Wil, pray for tout and your family.

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  1. Beautiful Battle Wounds | Ma Nouvelle Mode - May 31, 2013

    […] definitely shared with you the worst part of our journey with our heart baby, Bennet, the really really difficult part. There is more to share, more light to shed on the journey of of […]

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