Sean Luna goes home

I had the honor of interviewing Tony and Anne Luna about their son, Sean Vincent, and their faith journey. I'm blessed to be able to share the story of this incredible Catholic couple and their faith in God. As a writer, there are times when you know you have an amazing story to tell, and this is definitely one of them. I hope you enjoy reading it.

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Though he died hours after birth, a special boy continues to be a cause for joy in his family and their parish, who see the hand of the Holy Spirit.

By Elena Perri

This is a story about love. The love for a son and the love for a little brother. This is also a story about how the love for a child can inspire and transform people.

This story is about Sean Vincent Luna.

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Sean’s parents, Tony and Anne Luna, had already been blessed with three children, Luke Aedan, 7, Olivia Rose, 5, and Maggie Grace, 2. So when Tony and Anne learned they were expecting their fourth child, they looked forward to preparing for the new addition to their family.

This was the first time the couple decided to learn the gender of their baby, and at the 20-week ultrasound, they found out they were having another boy. After three previous pregnancies, ultrasounds were routine experiences for them.

This ultrasound, however, was a bit different.
“You look at the ultrasound screen, and you’re not sure what you’re looking at,” Anne said. “This time I remember a few questions came to mind as I was looking at his anatomy, in particular his heart. I remember distinctly in our last pregnancy being able to see all four chambers and thinking how cool that was.”

While she noticed that difference in the baby’s heart, the ultrasound technician didn’t say anything, and Anne and Tony assumed everything was fine.

A week later, Anne noticed that she missed a voicemail message from her obstetrician on her cell phone.

The doctor called again while they were taking Olivia to her dance class. “We were on the cell phone together listening to the doctor telling us things in very dry, clinical medical language that was very difficult to understand, especially over a cell phone with two people trying to hear,” Anne said. “We were just stunned and terrified.”

Tony and Anne went in for a follow-up ultrasound where they learned that Sean had several indicators for Trisomy 18, a genetic disorder where a person is born with an extra 18^th chromosome. According to the Trisomy18.org, web site, the genetic disorder occurs in about 1 out of every 2,500 pregnancies in the United States.

Although some people with the condition live into their 20s and 30s, the mortality rate is high for children with Trisomy 18, either before they are born or soon after.

“When the doctor said Trisomy 18 it was just like we were hit with a ton of bricks,” Tony said. “We knew the gravity of it right away.”

The couple, members of St. Isidore Parish in Quakertown, was familiar with Trisomy 18 because of former Sen. Rick Santorum’s campaign to become the Republican presidential nominee last year. The candidate left the campaign trail last April when his youngest daughter Bella, who was born with the disorder, was hospitalized.

“He became almost like a heroic figure to us as we found out about our son,” Tony said. “It was like God was showing us that somebody else is getting through this and you’re certainly not alone.”

“What do you want to do next?”

While Anne’s doctors thought that Sean had indicators for Trisomy 18, the diagnosis could not be confirmed without amniocentesis, a procedure where amniotic fluid is drawn from the amniotic sac that surrounds the baby.

“We wrestled with doing it because of the risk,” Anne said. The doctors were “pretty sure there was something genetically severe going on, and they needed to know what it (the diagnosis) was so they could come up with the best action 

plan to care for him when he was born.”

Tony and Anne knew that Sean might need heart surgery or other surgeries immediately after he was born to resolve the medical problems he had.

After the Trisomy 18 diagnosis was confirmed through amniocentesis, the 

doctors asked the couple, “What do you want to do next?” In other words, “Do you want to terminate the pregnancy?”

“Although we were dazed and confused, somewhere we found the strength to say that is not an option,” Anne said. “We were asked at least twice by two different doctors over a couple of ultrasounds. They all seemed a little surprised that we were going forward, but they were supportive.”

The Lunas researched Trisomy 18 on the Internet and learned that more than 75 percent of parents who receive this diagnosis decide to abort the pregnancy.

Anne read stories online about couples who chose to continue their pregnancy and noticed they were often people of faith. “Their journey of faith came through so clearly and how much they grew in love for each other and in love for God through the experience,” Anne said. “That gave me some hope that what we were doing – as painful as it was – wasn’t going to be in vain.”

Telling their children

The older Luna children kiss and hold their baby brother, along with dad, Tony.

Another challenge they faced was how to tell their young children about Sean and his condition. Anne, who has a master’s degree in education, explained to her children how chromosomes 

help define a person’s physical characteristics such as eye color and height.

She then told them that sometimes there is an extra chromosome that “confuses the body and the body can become very sick.” Anne also reassured the kids that their chromosomes were fine and would not make them sick.

From a Catholic faith perspective, Tony wanted his children to know that “Jesus loves all children, regardless of the circumstances of their birth. Sometimes He puts people on earth – doctors, scientists and nurses – to help cure sickness, and sometimes He needs to do it Himself.”

Tony also told them that Sean might go to heaven “before we ever get the chance to meet him. We simply don’t know, and all we can do is pray.”

Prayer was a source of comfort for the couple and their children. Luke, Olivia and Maggie would pray for their little brother every night.

Tony said he and Anne prayed they would get to meet Sean and that “he would be healed in this lifetime, or if it be God’s will, in the next life with Jesus in heaven.”

Sean’s arrival

The Lunas said both prayers were answered on April 23, 2012 when Anne delivered Sean Vincent at 32 weeks. She gave birth via C-section, and their pastor, Father Fred Riegler, was in the operating room and immediately baptized Sean.

While Sean only lived for a few hours, his older brother and sisters had the chance to meet him in the hospital. Tony explained that one of the doctors strongly urged him to ask his children to leave the room because she thought it was better to protect them from seeing their dying brother.

He told the doctor: “As their father, I know my children want to meet their baby brother, and I believe they will be fine.”

Luke then had the chance to hold Sean on his lap. “He kissed his baby brother, blessed him with holy water and held him close,” Tony said. “Then he looked up at me and said, ‘Daddy, I know Sean is dying, but he is such a cutie and I could hold him forever.’”

Tony later told Luke and Olivia that their brother had passed away. “Luke immediately asked me if we were going to bring Sean home,” he said. “Olivia quickly added, ‘Daddy, all children are supposed to come home.’”

A few days later, as Tony and Anne prepared for their son’s funeral Mass, Tony said he realized that Luke and Olivia were right: All children are supposed to come home. Tony wrote in his eulogy: “Sean Vincent did come home — he went home to loving arms of Our Lord — where God willing, we will meet him again someday.”

Sharing Sean’s story

A few months before they learned of Sean’s diagnosis, the Lunas had planned to host a “Cat.Chat” concert at their parish. Gerald and Denise Montpetit and their family perform the concerts that are geared to younger children and include songs and performances that incorporate Catholic teachings and God’s Word.

When the Lunas initially e-mailed Gerald and Denise, they weren’t going to be traveling to Pennsylvania for a few years. But when their plans changed they contacted Tony and Anne about hosting a concert at St. Isidore’s in May 2012. With friends and fellow parishioners helping to promote the event, more than 275 people attended the concert, which was dedicated to Sean and all mothers and their children.

“The concert brought us so much joy,” Anne said. “It was such a light at such a dark time for us, especially for our kids, who love the Cat.Chat music. It gave them something to smile about.”

In addition to dedicating the concert to their son, Tony and Anne shared their family’s story through journal entries on the CaringBridge web site and with their parish community.

The couple, who have been married 13 years, later learned that their experience with Sean and their witness of living the Catholic faith had touched many people.

Tony recalled a woman telling them, “‘You have no idea what your journey is doing for us; it lifted me and my husband up. There was a point where we thought about leaving the Church, and your story has given us hope that there are people of faith around us.’”

He added: “I can’t take any credit for that woman’s heart being touched by our story. All I can say is the Holy Spirit is alive and well.”

Unbeknownst to Tony and Anne, a family member who teaches at a Lutheran girls high school was reading the couple’s journal entries to her students every week. Anne said the teacher was sharing their story because she wanted “these young ladies to know that the faith we’re teaching in the classroom is real.’”

Following the Cat.Chat concert Anne said a mom in the parish was inspired by Sean to organize a Vacation Bible School, which was held at St. Isidore’s last summer. “We had 70 kids in Vacation Bible School,” she said. “They had an awesome time.”

The power of saying yes

These positive experiences happened because Tony and Anne decided to follow their pro-life convictions and proceed with the pregnancy.

“I’m convinced that we did nothing more than say yes to allowing our child to be born — however God was going to have him born,” Tony said. “As soon as we said yes, I believe God and the Holy Spirit took care of everything else – from giving us strength, to giving our kids strength, to touching and changing the hearts and minds of people.”

Although they suffered the loss of their son, they are grateful that Sean’s short life had a positive impact on others. “I look back with a little bit of sadness but so much more joy, knowing how much his life meant to so many people,” Anne said.

Anne is also grateful for the support she received from family, friends and fellow parishioners.

“When I was pregnant with all of my babies, I couldn’t imagine going through an entire pregnancy and then going home without a baby,” she said. “I thought that would probably be something I couldn’t survive. When I look back on it, I don’t know how I survived. But God will hold you up and people around you will hold you up. There were graces all along the way.”

Anne Luna cuddles her newborn son, Sean, moments after his birth and hours before he died.

I wrote this commentary a few days after the shootings at Sandy Hook Elementary School, and it was originally posted on www.catholicphilly.com.

Connecticut shootings hit close to home for mom

The massacre at Sandy Hook Elementary School in Newtown, Conn., has had a profound effect on me because my younger son Sean is 6 years old — the same age as many of the victims — and my older son Christopher, 10, has been diagnosed with Asperger’s syndrome.

While it has been reported that the alleged killer had been diagnosed with an autism-spectrum disorder, I don’t believe this had anything to do with the shooting. The young man was obviously mentally unstable, as is often the case with people who perpetrate mass killings.

Organizations such as Autism Speaks and the Autism Global Initiative Committee quickly issued statements regarding this catastrophic event because some news media outlets have inaccurately reported a potential link between autism-spectrum disorders and planned violence.

The Initiative said, “Autism is not a mental health disorder — it is a neurodevelopmental disorder…. As adults with autism living productive, peaceful lives, we urge the media and professionals who participate in speculative interviews about the motives of the accused shooter to refrain from misleading comments about autism and other neurodevelopmental disabilities. The eyes of the world are on this wrenching tragedy — with 1 in 88 now diagnosed, misinformation could easily trigger increased prejudice and misunderstanding. Let us all come together and mourn for the families and exercise the utmost care in discussions of how and why it occurred.”

As the mom of a child with Asperger’s, I pray that people will never perceive my intelligent, funny, creative and conscientious son as someone who could be a mass murderer. As someone who has worked for newspapers, I hope reporters around the world will never misrepresent those diagnosed with autism spectrum disorders.

My plea to journalists is that you don’t paint my son – and others like him — as a potential threat while searching for the “why” behind this heinous crime. We may never know what set this killer off on a bloody rampage.

There has been a “news blackout” at our house because the stories about these children and the suffering of their families are excruciating to watch. I also don’t want my boys to see the news media’s non-stop coverage of this tragedy.

As Christopher was getting ready for bed last Friday night, I hugged him, told him he was a great kid and that I loved him. Christopher smiled up at me and said, “And why are we doing this?” I think he knew the reason, but I told him, “Because it’s true, and because I can.” I explained there were parents who would never again be able to hug and kiss their children and that I was incredibly sad about that.

Earlier that day I had decided to pick up Sean from school instead of having him take the bus home because I was planning to take Sean and Christopher to a local fun center with indoor moon bounces. When I arrived at Sean’s school and he saw me waiting outside, he ran over and gave me the most enthusiastic hug. I’m incredibly grateful for that hug, and I will never forget it.

I can’t stop thinking about the parents who were preparing to celebrate Christmas with their young children. Now those parents are preparing to bury their children days before Christmas. I can’t stop thinking about the innocent children who were gunned down and the long-lasting effect this tragedy will have on their classmates, their teachers and their community. I also can’t stop thinking about the killer’s family — or at least what’s left of it — and the impact this heartbreaking incident will have on them for the rest of their lives.

While I struggle to comprehend this tragedy, I pray that treatment for mental illness is at the forefront of discussions by pundits and politicians. The health care system in the United States has failed to provide adequate services (including hospitalization) for the mentally ill. A recent report by the Treatment Advocacy Center, a national nonprofit organization dedicated to eliminating barriers to the timely and effective treatment of severe mental illness, focuses on this issue. Ironically, the report is titled “No Room at the Inn: Trends and Consequences of Closing Public Psychiatric Hospitals.”

The report states the number of state hospital psychiatric beds in the United States decreased by 14 percent from 2005 to 2010. Where do the mentally ill end up? Hospital emergency rooms, jails and prisons.

According to a story on National Public Radio last year there are an estimated 350,000 offenders with mental illness locked up in America’s prisons and jails. The story stated, “More Americans receive mental health treatment in prisons and jails than in hospitals or treatment centers. In fact, the three largest inpatient psychiatric facilities in the country are jails: Los Angeles County Jail, Rikers Island Jail in New York City and Cook County Jail in Illinois.”

The Treatment Advocacy Center report highlights the impact of the continual decrease in psychiatric hospital beds in the United States. “Overall, many states appear to be effectively terminating a public psychiatric treatment system that has existed for nearly two centuries. The system was originally created to protect both the patients and the public, and its termination is taking place with little regard for the consequences to either group.”

The issue of gun control will likely be a hot topic in the news media and in Washington, D.C. Some politicians are recommending that the ban on assault weapons be reinstated. If that ban was still in effect and the alleged gunman acquired his weapons illegally, would that make this tragic loss of life easier to bear? Absolutely not.

I don’t think this young man’s mother should have kept weapons in her home – even if they were locked up – especially if her son had mental health problems. However, I believe that where there’s a will, there’s a way, so if someone who is mentally ill (or not) is determined to kill, they will do so whether or not they have a gun.

With this sad story dominating the news, it was difficult to focus on joy during Mass this past weekend. The readings included these words: “Shout for joy, O daughter Zion!” and “Rejoice in the Lord always.”

A friend of mine, Capuchin Father Paul Dressler, who served at St. John the Evangelist Parish in Philadelphia, said in his homily: “How do we shout for joy when our hearts are broken? How do we rejoice when all we want to do is cry?”

Father Paul suggested three ways to rejoice in the midst of sadness. He said: “Guard your heart against all those things that would lead you away from the promises of God. Guard your heart against the evil by turning your mind to the good.”

Secondly, Father Paul said that we must root our hearts in gratitude, which is “like a protest against the darkness.” Lastly, he recommended that we “give ourselves away in acts of love. Love is the word that lifts the heart out of darkness. The resurrection of Jesus says so clearly, “Love conquers sadness. Love will conquer sin. Love will conquer senseless violence. Love will even conquer death.”

I’m incredibly grateful to God that I can hug my sons and express my love for them. This is an unquestionable opportunity that all parents should rejoice in — not only during this Christmas season — but always.

In the midst of this joyous time of year, I will surely be weeping for the loss of these innocent children and their teachers, and I will be praying that God will comfort their grieving families, the school community and the residents of Newtown.

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Elena Perri is a former managing editor of The Catholic Standard and Times, and CatholicPhilly.com.

Of fear and water

The other day my older son Christopher complained that his hands were hurting him. That news didn’t faze me at all because I knew why his hands ached: He spent more than an hour clinging -- with a white-knuckled grip -- to the concrete edge of the pool at my sister-in-law’s house on the Fourth of July. (She and her husband hosted a family get-together, and the pool was the main attraction on a rather sultry day.)

Group swim lessons have helped him a little, but his fear remains. And that fear now seems to be contagious because my younger son Sean is also in full fear mode; he barely left the pool steps and resisted my attempts to help him relax and enjoy the water. Most of the time I was holding Sean, he had a death grip around my neck or arms. I have a few scratches on my back from his frantic attempts to hold onto me.

This summer we hired a babysitter – Michelle, a rising senior at St. Joe’s University who just so happens to be a former lifeguard. Fortunately, my sister-in-law is aware of her nephews’ fear of water, and she has given us access to her pool so Michelle can hopefully help them increase their confidence and comfort level in water.

I used the mantra, “You are tall; you don’t need the wall,” with Christopher while he was in the pool. My rationale was simple: He’s 4 feet, 7 inches tall, and he’s standing in four feet of water. There really was no reason that he couldn’t walk away from the wall – which he did – with encouragement, of course.

Sean, on the other hand, didn’t want to leave the pool steps. He wouldn’t let me hold him because he said he was afraid that I would let him drown. I guess Sean forgot about the time I lifted him up out of two feet of water when he somehow managed to lose his footing and went under water. (All he had to do was stand up – he was 3 feet, 5 inches at the time ‑- but that’s another story.)

So our challenge this summer is daunting but doable: decreasing our boys’ fear of water and increasing their confidence so they can enjoy the water... and feel safe.

Sisterly love

This is my first blog post, and I’ve picked Elena Della Donne as my first subject. I didn’t pick her because we share the same name. I didn’t pick her because she’s an All-American basketball player (not to mention an academic All-American).

I chose to write about Elena because of who she is as a person and her actions off the basketball court. She had been a standout player at Ursuline Academy, a private Catholic high school in Wilmington, Del., and received an offer to play basketball at the University of Connecticut, a powerhouse team in NCAA women’s basketball.

She only attended UConn for a short time before deciding to return home to Delaware where she enrolled at the University of Delaware. She had done the unthinkable by walking away from one of the best basketball programs in the country. Nobody could fathom why she abandoned this once-in-a-lifetime opportunity. People didn’t understand her actions because they didn’t understand who Elena is as a person.

First and foremost she is a young woman who loves her family and values her relationships with them. Ultimately, she decided that family was more important than winning basketball games, setting records for points scored or being in the bright spotlight at UConn.

What mattered most to Elena was being close to her family, especially her disabled sister Lizzie. Her sister is blind, deaf and doesn’t speak. She knows Elena only by smell and touch. Their sisterly bond is what drove Elena to return home. Elena felt an emptiness without Lizzie and her family nearby.

Elena’s story demonstrates that she values her sister’s life and that Lizzie’s presence is paramount. Elena feels such a strong connection with her sister that she has Lizzie’s name tattooed on the side of her ribcage. Elena will tap the tattoo during a game to remind her of her sister and ask for her help.

Elena’s story and example of love is now more widely known thanks to recent newspaper articles and TV coverage during the NCAA tournament. Her team, the University of Delaware, made it to the tournament and won its first match against the University of Arkansas at Little Rock. It was the first time a University of Delaware basketball team had ever won a NCAA tournament game. Unfortunately, the University of Delaware was knocked out by the University of Kansas in the second round, despite Elena scoring 34 points in that game.

I’m sure Elena and her teammates were disappointed, but I have a feeling she was able to take the loss in stride. Why? Because Elena knows her priorities and family will always trump basketball.

Elena is a shining example of someone who loves unconditionally, and she fearlessly shows that love to the world.