Who it’s really about

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Who it's really about

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: 15


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.

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.