It’s easy to take for granted living in Massachusetts. We have here, quite literally, the greatest concentration of medical knowledge in the world. I wish I were exaggerating. But in more than fourteen years being Jacob’s dad, I have met people from across the globe who have sacrificed everything to come to meet with doctors and specialists in the many hospitals and clinics in and around the Boston area. I am reminded of this every time we visit Boston Children’s Hospital. Sit in the lobby for more than a few minutes and you will be amazed by the world of cultures that pass by speaking a myriad of languages.
When we arrived for our first visit at BCH, I learned quickly why Boston is considered among the best, if not the best, in cardiac care. The doctors were able to determine the possibility that Jacob would be born with Down syndrome by spotting ‘markers’, or medical conditions, common in children diagnosed with Trisomy 21: Congenital Heart Defect. They told us Jacob has CHD, including ASD/VSD, Cleft A/V Canal and Tetralogy of Fallot due to having three chromosomes on his twenty-first pair. In layman’s terms, it meant that Jacob’s heart had a humongous hole in the center and was malfunctioning. What that meant for him was the possibility of multiple open-heart surgeries before the age of six months to mend his little heart. The amazing part of all of this was that the cardiac team at BCH could diagnose this at just nineteen weeks gestation. His heart was only the size of one’s pinky fingernail with a hole less than a millimeter wide.
This was plenty of news for new parents to receive of a child who had yet to finish growing in his mother’s womb. The diagnosis, and the extensive surgeries that would result, were enough to drain the blood from our faces. No parent, even the most prepared to bring a new life into this world, is ever ready for this type of experience. I remember holding Charlotte’s hand tightly as we walked through the main doors of Boston Children’s Hospital. I remember thinking, “My son’s heart is broken,” and my heart was breaking as I contemplated an unknown future.
But as we walked through that lobby that morning, we were met with smiles. Yes, the exceptional staff at BCH greeted us warmly as they directed us to the Cardiology department. What caught my attention were the many families with smiles on their faces as they cared for their loved ones. Mothers and fathers smiling. Brothers and sisters laughing and kidding. And children in wheelchairs, or without hair, or with tubes and wires sticking out from under loose-fitting clothes, smiling.
And I realized something at that moment.
I realized the feelings about my son’s health issues were rather selfish. Yes, my wife Charlotte and I had a difficult road ahead with Jacob. But it was how we were going to face that road that would define it. We had a choice. And what I learned from those other parents that day is that the right choice is one of hope.
Hope is not just wishing all will be better. Yes, that is an aspect of hope. But on that day, I recognized quickly many of these parents were not clinging to that type of hope. There was a better chance than not that their child might not survive the illness or affliction they were enduring. There was a truthfulness in their eyes as they cared for their children. No, their hope was to have possibly one more year, one more month, one more day, one more moment with their loved one, and it was to make it the best possible moment it could be.
There is no controlling the circumstances that brought us here. There is no guarantee of a cure that will alleviate the pain, end the suffering, or save the life. But we can choose how we feel now. And the families at BCH that day chose to smile. They chose to make that moment the best it could be for their loved one, because that’s all they could do. I witnessed a hope stronger than any circumstance or outcome. What I saw was a room filled with the strongest, most courageous people I had ever seen.
Who was I to think of my own circumstance with self-pity? That day it wasn’t Jacob’s heart that was mended. It was mine.
So, from that day to today, I will smile. I will smile not for me, but for all those families I saw that day. I will smile for all those families who will see me with Charlotte and Jacob in the lobby of Boston Children’s Hospital. I will make right now the most important moment in life. Because no matter what the circumstance and no matter what is to come, today I will have hope.
Photo by DVIDSHUB