A Nurse’s View
Shortly after Greyson died I began working with a professional editor to write a book based on our experience as a medical family. I finished the manuscript within a few months and then decided that it wasn’t good enough. It wasn’t good enough for my son. I didn’t feel that it did his life the level of justice that he deserved and so I never published the book. The final draft has been sitting in a box in my closet for the past 5 years.
Recently I mustered up the nerve to re-read the Forward, written by one of Greyson’s most beloved nurses. I don’t know if I will ever officially publish the book, but feel like this beautifully raw perspective from a frontline caregiver is too important not to share:
Imagine for a moment, a strikingly beautiful blonde new mother sitting in a recliner bathed in the warm afternoon light of the Northern California sun, holding her weeks old baby boy and beaming from ear to ear with each new discovery of his facial expressions or a new tone to his cry.
Now, imagine that five electrodes are attached to that baby’s chest closely monitoring his heart rate and rhythm. A pulse oximeter to measure the amount of oxygen traveling to the bottom of his feet and the tips of his fingers. A tube exiting his nose that originates in his stomach, hooked up to suction on the wall. A second tube entering the other side of his nose that extends beyond the stomach and into his small intestine for feeding, hooked up to a feeding pump. A nasal cannula nearly a quarter the size of his face traversing across his upper lip and occluding the tiny openings of his nose with a long tube connected to oxygen on a large specialty high flow machine. On his thigh there is a sticker that wraps almost twice around his tiny leg covering a two-lumen central venous catheter jutting out the bottom, connected to an IV pole 24 hours a day, 7 days a week with medicines infusing that provide him nutrition and medications to support his heart function. He’s also wearing a blood pressure cuff on the opposite lower leg. He has a peripheral IV in one of his hands. Finally, he has another catheter in his armpit that continuously monitors his real-time blood pressure.
Imagine that both of these scenarios are occurring simultaneously. Every day. For at least eight hours. For three months. No exceptions. Imagine being the bedside nurse for that baby boy and his new, proud, loving, vibrant, beaming momma. That’s my job. It also happens to be my passion, because when a story as tragically beautiful and breathtaking as the one you are about to read unfolds in front of my eyes, passion is the only option.
In seven years of being a nurse for children with congenital, often terminal, heart defects, I have never met a mother embracing this challenge with such fervor, such love, such energy and such focus. I’ve never witnessed someone sacrifice so much of herself and yet, at the same time, employ coping strategies she didn’t even know she possessed, or needed, to find the delicate balance that is required to ensure her own mental, emotional and physical health was cared for, and that her baby, Greyson, knew that his Mommy loved him unconditionally and powerfully every second, every minute, every hour of every day of his short life.
My job has a tendency to be dark. When a journey like Amy and Greyson’s touches my heart, I realize that despite the heartbreak, the resultant light shatters the dark and creates a space for me to know that the work I do is absolutely worth every second, and I need these kids and their families way more than they need me. Most nurses carry around a dirty little secret disguised by this “superhero” and “angel” label that we are bestowed with. We actually benefit more from caring for you than you do from us. You touch our hearts in ways that actually alter our paths and change our lives.
I don’t yet know what the coming pages contain, but I do know this. This memoir could be used as a blueprint for any family facing a journey with a critically ill child. This is a story about a mother walking through the most difficult time of her life with grace, humility, and love. It was and will always be the honor of my career and one of the great honors of my life to have been a small part of the perfect little life of Greyson.
