Sitting in the vinyl recliner in the neo-natal intensive care unit, I pressed the cardiologist on the impact of heart-lung bypass on our daughter’s tiny developing body. Terrified of his answer, I trailed off and tuned into the beeps of the monitor tracking her decreasing oxygen rate.
The doctor’s forthright but kind tone jarred me back into awareness, ”Unfortunately, you don’t have any other options. Charlotte won’t live more than a couple of months without open-heart surgery, so it may not be helpful for you to spend time worrying about the side effects.”
His words left me with an excruciating sense of powerlessness.
When God gave Michael and I the name Charlotte Louise—meaning “tiny fighter”– we had no premonition about the story that was to unfold. What we did know is that we were overjoyed to be expecting another precious little girl: after years of infertility, three children seemed like unfathomable grace.
Charlotte was the last of our frozen embryos from an IVF cycle six years prior. We affectionately referred to her as “the little frosty that could” and throughout my pregnancy our family would spontaneously break out into Rachel Platten’s “Fight Song” as we marveled at her beating heart, once a frozen mass of cells.
Now, facing the reality that our baby had to be cut open in order to live, my own heart felt torn between utter terror and doubt wondering if she would make it through surgery.
I had a gnawing sense, given her namesake, that God was writing this story. Still, the rescue plan seemed too much for my heart to bear: Charlotte’s newborn skin would be cut, her breastbone cracked open, and her heart stopped. We were given a 90 percent success rate, but my traumatized brain could only hear the 10 percent chance that we would never hold her tiny warm body again.
As the September surgery date grew closer, Michael and I began discussing who we wanted in the waiting room with us during eight of the most vulnerable hours of our life. These conversations evoked a question in me:
Was I willing to be cut open in the presence of my community and trust that my heart could be rescued too?
Author Paul Miller says that death is at the center of love. As the day of surgery drew closer, I heard Jesus asking me to bare my terror and to expose my wobbly, shocked and distressed body, trusting that love could hold us.
The hours that Charlotte was in surgery were the most agonizing of my adult life.
I shared them with a small rescue boat of our closest friends and family who traveled from miles away, taking vacation days from work to be with us in the waiting room. They wept, prayed, cheered and at times literally held me as I lay in the fetal position on the third floor of Orlando’s Arnold Palmer Hospital for Children.
A cutting-edge new app allowed us to receive surgical updates every 30 minutes. When a notification arrived, I would run down the hall panicked, hiding from the news until I could tell from the expression on a friend’s face whether it was safe to hear for myself.
Grasping for hope at other moments, I tried to imagine being home at Christmas, our family reunited, holding Charlotte in the dark, by the colored lights of the tree.
Back home friends cooked warm meals, made Costco runs, and snuggled our two pre-school girls. A dear friend from graduate school started a social media campaign encouraging folks to write Charlotte’s name on their hand, with a heart, in support of our family.
Charlotte’s story was no longer simply our story. It was shared by our community, who stood in solidarity, groaning and pleading for resurrection. Sacrificial love carried us that day, with a love that we could never pay back.
Today, Charlotte is a fierce, energetic and joyful 18-month-old. The scar on her chest inspires awe and remembrance of the suffering the she endured and the love that was poured out in that sacred waiting room where the veil between heaven and earth was thin.
In the early days of this new year, you don’t know what diagnosis you may face or what type of heart surgery you could be asked to endure–whether addiction, disease, unemployment, disability, betrayal or loss of any kind.
Suffering is a given in this life, but take heart dear friends, that there is One who has overcome the world and to share in His sufferings is to know more deeply the gift of His sacrificial love. When we are willing to bare our hearts, even when we are in congestive heart failure like Charlotte, the pulse of His healing love flows through the people in our waiting room offering life-giving hope, strength and consolation.
Rachel Blackston loves all things beautiful…rich conversations over a hot cup of lemon ginger tea, watching her two little girls twirl around in tutus, and Florida sunrises on her morning walks. She resides in Orlando with her lanky, marathon running husband and her precious daughters, priceless gifts after several years of infertility. Rachel and her husband Michael cofounded Redeemer Counseling. As a therapist, Rachel considers it an honor to walk with women in their stories of harm, beauty and redemption.
Stunning. The transparency with which you describe the uncertainty and the waiting is a gift to those of us who once sat prayerfully in the waiting room and those who will one day wait. In this writing, you are a blessing to so many!
Wow, thank you for your encouragement from one who has spent time in a waiting room. Your words humble me. The day was full of anguish and fear yet the tender love was palatable and is etched in my mind. Whatever your 2018 holds, may He be ever so near to you.
What a remarkable and inspiring story of waiting, and agony borne through grace. I rejoice that your Charlotte is doing well. Blessings.
Thank you Claudia for your kind response and for putting words to “agony born through grace.” Charlotte is running around trying to hit the laptop keys as I respond 🙂 🙂 Rich blessings to you this year as well.
I love you. Grateful.
Love you Sue. What an honor to have you with us on that day. You presence and care are a treasure.
Rachel, this is breathtaking. Your story is breathtaking. Charlotte is breathtaking. The way you hold it is breathtaking. Your writing… takes our breath until the Spirit comes to catch us. I will always be sad that you (all) had to endure this; I will always marvel at how you did.
Oh Jan, these words are a treasure. You captured it so well…we were all breathless until the Spirit came to catch us. Thank you for stepping into this space with us. Your care for all of us is so evident
This post is breathtaking. As a former cardiac OR nurse, I am right there with you, knowing the dangers and fear of bypass and cardiac surgery. And as a human being, I am so touched, because my own struggle to allow people into my vulnerabilities and insufficiencies is very real. It is perhaps the most risky place for me…to let others see my flaws or weaknesses and hope they’ll love and stay with me anyway. This post, and your daughter’s fighting spirit, are such a beautiful reminder that letting people into “the waiting rooms” of our lives and being loved within community is such a sacred gift. And it inspires me to fight to stay connected, even when I want to distance myself! Thanks for sharing your story, it’s a blessing!
Libby, I did not realize you were a former cardiac OR nurse. You get it! Thank you for the gift of validating the legitimate fear that we experienced. I am humbled to hear that my story invites you to take risks in being vulnerable with your community. I hear you…the plunge is terrifying, but so worth the risk, when love catches you. I can’t wait to meet you in person in Austin.
Yes! Can’t wait to meet you too!
Such a heart piercing account of your journey. Thank you for the strong reminder of how love holds us in the midst of terrifying pain. The body of Christ bearing the burden of neighbor. Thankful for your gift.
Michelle, thank you for being in our waiting room. I love you.
Thank you, for sharing this precious story. Your decision to open yourself is a brave one, that rocked my Spirit. As you agonized with yourself…with the strong words you used, about opening yourself up…Gods spirit really hit me. You were willingly to go thru excruciating heartache with your friends and family. I take courage, as Jesus was with you, he will be with us as we navigate life wrenching struggles. Bless you and your family. Teresa
Teresa, I am humbled and moved to hear how the Spirit struck you. Thank you reading and allowing your heart to be impacted. Your words are such a kind offering and put a huge smile on my face this morning. May He be ever so near to you and your family this year in whatever struggles you may face.
Wow, what an incredible story! I was particularly moved by your struggle to open yourself up to your community as you waited, and yet also knew how much you needed that support – evident in your intentionality of choosing who was in the waiting room with you that day. I love the image of Jesus’ healing love flowing through the people in our waiting rooms, it is one I will hold close. Thank you.
Janet, thank you so much for reading. I can’t wait to meet you in Austin. We stayed at the hospital for 10 days of post-op and when Michael and I looked over at that waiting room, we felt like a war had been fought in there. I’m so glad we weren’t alone! The anguish of that day is still stored in my body, but I can honestly say the love that is seared in my heart is the bigger story. I’m so glad the image of Jesus’s healing love will stay with you. May He be ever so near in whatever waiting rooms you face this year.
Im speechless… The overwhelming amount of love described in this post, whether between friends, family or strangers, once again reminded me that humans are GOOD. Thank you and congratulations on your lovely daughter; a true gift from God.