Katie Reginato-Cascamo, 32 from Klamath Falls, holds up her 3 lb. 7 oz. son Giovanni Victor Angelo Cascamo Thursday at Rogue Valley Medical Center’s NICU facility. Born December 12, Giovanni was a cesarean section delivery at 30 weeks and weighed only 2 lb. 8 oz. H&N photo by Andrew Mariman.
Nine years ago, I built my life on the worldly definition of success and career-oriented values. Complications in my pregnancy led the life I built to crumble. This led to burnout and hopelessness at a time when most people experience joy.
Giovanni was born two and a half months premature at two and a half pounds in December 2009. As a feeder-grower during our 56-day NICU stay, he never experienced significant complications. It was the toxic stress of my pregnancy and the H1N1 Swine Flu during my pregnancy that has affected him more these nine years than the actual NICU stay. Traumatized by a very difficult pregnancy, I went in to our NICU stay with very little fight left in me. The night I was airlifted in critical condition led me to reflect on the direction and values most important in my life. Fully awake and hypervigilant, I observed a team of healthcare providers from multiple organizations quietly and quickly care for me as if they were one connected whole.
For 56 days I watched my courageous preemie transform hearts. For nine years since then I have had a front row seat to a child who loves beyond measure and in return is loved by everyone he meets. Giovanni’s gentle courage is the hallmark of his personality. This is rooted in the empathy that comes from a NICU stay. As our NICU nursing staff modeled wholehearted servant-leadership, they helped me find the courage to do tasks such as changing his diaper that would later translate into an ability to overcome my own challenges. As they genuinely listened and built a meaningful relationship with me, I learned to model caring, compassionate leadership that has redefined my life purpose.
This caring, compassionate style of leadership and team work was so different from what I knew before the NICU. Two years after we graduated the NICU, I retrained for new career in healthcare by pursuing a Master of Arts in Organizational Leadership with a Concentration in Servant-Leadership from Gonzaga University. My graduate work and future doctoral work studies wholehearted, engaged healthcare providers and their ability to equip parents as leaders.
Every day I look into my son’s eyes and I see the reflection of every healthcare provider that helped him fight like a preemie. He has courageously overcome his fears, and every day I model Giovanni’s strength by looking into a mirror and discovering my own courage to do things I could never do without him.
Giovanni’s developmental delays due to attention deficit hyperactivity disorder (ADHD) and sensory processing disorder (SPD) have created barriers for activities that come natural for other boys. Giovanni recently learned to ride his bicycle for the first time. That night he shared how difficult this had been for him, but that it was so worth the wait for the thrill of freedom. Years of occupational therapy gave him the tools to experience this joy. As a parent it is heartbreaking to see our children struggle. It is the struggle that is creating resilient, empathetic children who will transform the world.
To fight like a preemie extends to parents and healthcare providers too. We need to give ourselves the same grace, encouragement and empathy we give our children. We often think that somehow our humanness isn’t subject to the same fight. To be fully human is to use life’s challenges as a springboard for life change.
As a preemie parent nine years into this journey, I reflect on how the NICU changed my life. The fight has been incredibly difficult, heartbreaking and at times a daily reckoning with my own doubt. One of my neonatologists told me that raising a preemie is, “three steps forward, two steps back.” This quote reminds me to keep pressing forward through even the smallest steps. Eventually we look up and see how far we’ve grown together.
Our NICU journey has been the defining moment of my life. I have had multiple opportunities to go back to my corporate management career defined by what the world values. I would make a lot more money and feel more financially secure. With that security would come a sense of failure, because I would not be living a values-driven life that changed on the night I was airlifted in critical condition. Every morning I wake up and equip myself through meditation to be what Dr. Brene Brown calls an unarmored, courageous leader fighting for healthcare providers who first cared for us. It is an honor to be in the arena fighting right alongside them.
Help other NICU parents discover their own courage and show everyone how strong preemies are! Make your donation to Hand to Hold today at handtohold.org/fightlikeapreemie, and help us get our support resources into the hands of 5,000 NICU families in 2019.
