The collection of memories and experiences that layer as we get older has come to fascinate me. When I was little, Valentine’s Day was about heart-shaped candies and miniature paper cards exchanged among friends. As a teen, it was a panic over whether there would be a special boy around for this very special day. As a married woman, it was waiting for a bouquet of roses and a candlelit dinner.

As a mom, Valentine’s Day immediately became about open heart surgery. This was a day on which Hope had what I call an “emergency baptism,” though no clergy would ever refer to it that way. This very special day, once reserved for candies and cards and dinners was suddenly about preserving my baby’s heart and, in turn, my own.

When I was pregnant, we met with a priest, Mother Emily, at our then church in the West Village. We knew there would be some challenges ahead with Hope’s Down syndrome, and Emily kept in regular touch with us once she was born, as we paused our Sunday morning attendance. Hope’s cardiologist had projected she would have surgery to correct her complete atrioventricular septal defect when she was between 3-6 months old, but within weeks of her birth it became clear she would need to go in sooner.

Hope wasn’t responding to her medications and was barely gaining weight. Without our persistence in waking her for fortified feedings (adding a special powder to pumped breastmilk) and attempting round-the-clock feeds 8 times per day, I feel certain she would have slipped away one afternoon during a nap, never again offering us a glimpse of her beautiful hazel eyes.

Around 6 weeks of age, the cardiologist’s tone changed from one of watchfulness to one of urgency, and he arranged all of the necessary conversations and paperwork to transfer us over to a hospital in the city to meet with Hope’s surgeon, ask questions, discuss the operation, and begin pre-operative testing. We were told that the left side of Hope’s heart was very small and that the surgery might not be successful. We were told the operation might not even happen, that the surgeon wouldn’t know until he went in whether he could fix her heart or whether he would do his best to manage something palliative, unable to promise us a future with our newborn baby girl. When we shared with Mother Emily that Hope’s surgery was imminent, she asked if we would like to have a baptism, something small, something between Hope and God. We said yes.

So on Sunday, February 14, 2016, at 7 weeks old, Hope was baptized at the Church of St. Luke in the Fields. We didn’t celebrate that day, we mourned. The baptismal font that always seems full of life and promise, that day overflowed with grief. We accepted that we weren’t in control of her destiny, simply that we could do everything in our power to help her while the window of opportunity was open for us to do so. The only way to know how much time we would have together would be to just keep going. And so we kept going.

Hope’s Valentine’s Days 2019-2023