This last week I asked everyone to pray for Rebecca, my youngest daughter. She had gone in for open heart surgery on Wednesday to repair an Atrial Septal Defect. The surgery was fairly routine (at least, as far as open heart surgery is concerned), and considering that Yale New-Haven was performing the surgery, we couldn’t have had a better team. But as you know from that same post, she wasn’t recovering well.
On Monday, I went to work, only to get called back to the hospital. My wife and I arrived and consulted with the surgeons, who said Rebecca had gone into heart block, where the heart doesn’t pump well and blood flow is sluggish. They wanted to install a temporary pacemaker so that her heart would keep working, and the surgeons were very hopeful that she would heal out of it. We agreed, and they wheeled her down to surgery.
Thirty minutes later, the nurse came up and said we needed to go downstairs. We were rushed to surgery, where the doctor came in and said Rebecca had gone into cardiac arrest after anethesia. He asked if I wanted to continue compressions or put her on bypass. Either way, she had a high chance of death. I told him “You walk into that room and make the best damn medical decision, and I’ll stand by you.”
Rebecca’s heart recovered on its own. Pacing wires were placed. The Code Blue paging stopped. We went back to recovery, and the local priest came in and performed an emergency Confirmation. The surgeon told us she was critical, but stable. We cleared our Tuesday schedule and drove home, an hour away from Yale, scared, but confident that things would work out.
We pulled into our driveway and called the hospital. They told us to come back. We made it back at 10 pm. I walked in and the heart rate monitor was reading zero. The doctor had his stethoscope on Rebecca’s chest, looked at me, and shook his head. I clutched her tiny hand, desperately hoping she would squeeze, but that movement never came. I spent the next hours cradling Rebecca in my arms and crying.
Everyone was in shock. We had the best team of pediatric heart surgeons, cardiologists, NICU and PICU nurses that you could assemble in America. Rebecca had been recovering. Her echocardiograms had all been good. The pacing wires had been firing. Everything should have worked. It was like the A Team of cardiology teams was on her side. They simply don’t lose people, certainly not kids like Rebecca. But as the head surgeon later told us, “One minute she was fine, the next she was in arrest and would not come back.”
The next few days made me wonder, “Why?” I’m used to death. As a Naval officer, I know that I willingly place my life on the line for others. I work with other members that do the same thing. I’m OK with that. But Rebecca? She was just a 7 month old kid. She spent too much time hooked up to tubes and wires. She didn’t deserve that. Honestly, as a Catholic, it depressed me. It didn’t seem fair.
So we started planning a funeral. And a wake. And a reception. We filled out forms. We called people and sent emails. And all of a sudden, I realized that I had missed the point.
Rebecca’s death wasn’t about her. It was about everyone else.
It was about the Yale New-Haven team. The team of doctors, nurses and surgeons that saw us choose life, saw us pray over Rebecca, and watched her emergency Baptism and Confirmation. Many of them didn’t share our beliefs on abortion and life. Some of them do now. Rebecca had tons of people from Yale that came to visit her even when she wasn’t in their ward or on their floor. I spied on many a nurse and doctor playing with her and making faces to make her smile. She touched their lives like no one else could. Rebecca’s death was about that team.
It was about the Down Syndrome community. It dawned on us when the Eastern Connecticut Down Syndrome group set up a Go Fund Me page that netted over 1,000 dollars in less than a day. Rebecca was born with Down Syndrome, and the Down Syndrome community in the northeast mobilized to support us. So many people that we had never met, or only met briefly, were praying for her. It brought them together. Rebecca’s death was about that community.
It was about my Navy command. My Assistant Officer in Charge told my Sailors the next morning what had happened. Almost immediately, my Sailors and their families began reaching out, asking what they could do to help. They didn’t have to. There are plenty of Navy resources, and often the going assumption is that Navy Officers have it all figured out. But as one Sailor put it in a text message, “He’s our Officer in Charge, and he always helps us. I want to help him.” Many of the Sailors had only ever seen Rebecca at the occasional family event, yet they wanted to help. Our Navy team grew closer. Rebecca’s death was about my Sailors and their families.
It was about people who lacked faith. People we didn’t know were suddenly reaching out to my wife. They said that Rebecca brought them to church and they were praying when they hadn’t done so in years. A friend of my wife that is a very vocal atheist asked people openly on Facebook to pray for Rebecca. No clauses in her request. No “If you believe” or “keep her in your thoughts” disclaimers. She made a genuine request for prayers. Rebecca’s death was about her.
It was about our family. I was honestly frightened about the thought of raising a kid that might live with me forever. It made me do a lot of research and talk to people. After meeting people from all walks of life who loved people with Down Syndrome, and seeing kids and adults with Down Syndrome do well in life (even swim the English Channel!), I realized that all life matters, even the ones that we view as disabled. My kids learned to love Rebecca, despite her being very different from other babies. Or perhaps, it was because she was so different that they cared even more. Rebecca’s death was about us.
I realized that I made a mistake. I focused on Rebecca’s pain. I watched her cry when she was stuck with needles. I watched her struggle to finish a bottle because her heart wasn’t strong enough to breast feed. It made me sad, but what I didn’t realize was that she was changing everyone around her. My focus on her pain blinded me to how she was an instrument to change those around her.
Many of us spend a large part of our adult lives influencing, or trying to influence, those around us. We read books, we devise arguments, we make PowerPoint presentations, and we argue on Facebook. And yet here I had a little girl, not even a year old, who came into my life and changed everyone around her, including people she never met. Her broken heart was changing those with hardened hearts.
She did it without words, without slides, and without a social media account.
It truly was never about her. It was always about us, about making us better. And even though it took her death for me to realize it, I’m glad that I did.
“At that time the disciples came to Jesus and asked, “Who, then, is the greatest in the kingdom of heaven?” He called a little child to him, and placed the child among them. And he said: “Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven. Therefore, whoever takes the lowly position of this child is the greatest in the kingdom of heaven. And whoever welcomes one such child in my name welcomes me.” Matthew 18: 1-5
Rebecca will be buried on Tuesday, with a wake on Monday. If you are in the Eastern Connecticut area, you are welcome to stop by. Please follow the link for details.
This post represents the views of the author and does not represent the views of the Department of Defense, Department of the Navy, or any other federal agency.