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.