Note: Some of these stories and images have a sensitive nature.
On Christmas Eve, 2008 my 5-month-old niece, who had been essentially hospitalized at Johns Hopkins Hospital since birth, received a non-matching blood type heart transplant. After recovering from the surgery as well as the multiple complications associated with deteriorating heart function, she has thrived.
Yet every year she returns for a heart catheterization to obtain the status of her heart’s acceptance by her body. While thankfully, for years, this check-up has been relatively unremarkable, this year was different: they detected “rejection.” After a massive dose of steroids and a few days of inpatient stay, the news was looking positive. Until it took a drastic turn for the worse. In mid-March Ally found herself in the CICU (Cardiac Intensive Care Unit) of the Children’s Health Care of Atlanta hospital in heart failure. When we received this news, I had a strong feeling in my soul: Liz, you have to go. After going through the appropriate approval channels for a non-immediate family member to stay on the ICU, I booked my flight and hit the skies. As much as I attempted to gather information about what to expect prior to my arrival, nothing could have adequately prepared me for the life-transforming experience of life with Ally on the CICU.
My sister-in-law grabbed me from the airport and we enjoyed an afternoon getting acquainted to the hospital as well as taking a walk through the courtyard (which would become a breath of hope to me) and through the surrounding area while also sharing the ups and downs of life. After a quick bite, she gratefully headed home (she hadn’t seen her 2 other girls in a week, leaving rather unexpectedly) to spend time with her family, sleep in an actual bed, and be refreshed by the “normal” of every day.
The overarching theme of my experience was “compassion.” The masked faces of every encounter shared an unspoken burden. We were all there because of some illness, surgery, trauma that had taken us to this place to receive help and healing. We were caring for those we loved as they suffered. We encountered uncertainty and unknowns grasping for hope.
And I received grace upon grace. The gentleman who checked me out at dinner gave me his “employee discount” which happened to be the exact amount left on my dining card. A woman at Starbucks gave me hot water and an extra cup for no charge. As we made our rounds in the courtyard with the IV pole in tow, a young woman shared with us, “You all must have great energy, my son saw you and stood up for the first time!” The woman in the gift shop shared blessings as I explained my reason for the trip (and why I was purchasing little gifts, including toy poop – HA!, to take home for my kids.)
When she was feeling well enough, Ally and took walks with the nurses: sometimes simply to other cardiac units to check out the best snack carts ;), sometimes to the courtyard green and blooming – moments of freedom, of moving toward health. And thankfully I was able to experience her decreased reliance on monitors and their associated wires. She sat up and expressed her creativity through painting (and then painted her aunt’s nails) 🙂 Little graces.
And during the routine hours when visitors were not permitted on the unit, I grabbed a bite from the cafeteria and ate and photographed and prayed in the courtyard. Breathing in sunlight and beauty, accepting the refreshment it offered.
On the day I was to depart I stood in on “rounds” with the team of medical professionals. As they reviewed her extensive medical history, at each step, I thought: Ally is a miracle. None of this makes logical sense. She should not be alive. But she is. She is here. She lives with the heartbeat of another given graciously in a time of despair. She is prayed for and cared for by countless people in innumerable ways. She receives medication and wisdom that ensure her heart continues to function inside a body that it did not at first belong.
I returned back to my daily life changed. With a deeper gratitude and broader perspective on the balance of and precious nature of life. Thanking God for the gift of each heartbeat.
Since then, each time we have a family gatherings, I receive a text from Ally, “Aunt Liz, will you bring your camera?” We have our own little photo shoot. We don’t seek a particular background, we simply step outside the door and capture light and life with gratitude.
Despite walking out of the hospital in March, her fight for life continues every day. She adapts her activity and sets alarms for medication while also doing typical teenage things (like sending her family cute pics of her hamster :). And yesterday I received her most recent heart testing update that months later, her heart is showing signs of healing. (For those with medical understanding, her ejection fraction has increased and her heart function has been upgraded on both sides of her heart).
Thanking God for His care, His mercy, His love, His ever-presence. And for His powerful work in the miraculous life of Ally. Here’s to light and hope and health ahead.