AUSTIN, Texas – (Jan. 15, 2015) – The bride wore a pink, almost salmon-colored dress with blue butterflies on it. The groom wore a black polo shirt and khaki pants.
Their best man was dressed in blue shorts and a button-up shirt with little black and white dogs on it.
After the wedding in the chapel of Dell Children’s Medical Center, there was no reception. No honeymoon. Instead, the newly married couple soon would have to plan another ceremony: a funeral.
Their best man, just three days shy of turning seven months old, passed away about an hour after the nuptials, in his parents’ arms. The family lay on a blanket in Dell Children’s Healing Garden, while the wedding audience of nurses, doctors and other associates quietly stepped away to afford them a last, private moment together.
“That incredible day,” recalled his mother, Constanza Serna McVerry, “coexists in our hearts with profound joy and surreal grief.”
A New Normal
Bobby McVerry, Jr., who had been in the hospital since Aug. 15, was supposed to go home with his parents this past Sept. 24. But a day earlier, Constanza, a bilingual reading specialist at Govalle Elementary School in Austin, got a voicemail from the hospital, alerting her that Bobby Jr. was unresponsive and to come as soon as possible. She called Bob McVerry, Bobby’s father, a fifth grade teacher at Becker Elementary School in Austin.
When the couple reached Bobby Jr.’s bedside, he was awake – but he also was what his mother called his “new normal”:demonstrably uncomfortable, tired and a little grumpy.
“I remember feeling kind of hopeful,” Constanza said. “He’s awake now. I think he’s going to be OK.”
But that evening, Bobby Jr. became unresponsive. His fever spiked to 104 degrees.
“His little body was so hot, and I knew he wouldn’t wake up,” she said.
Bobby Jr. suffered from Leigh’s Disease, a genetic ailment so rare his parents were told it affects just one in 40,000 children. He was diagnosed while the family was in Philadelphia for a family wedding.
He was three months old and began vomiting and wouldn’t stop. Leigh’s Disease symptoms typically begin within a year of a child’s birth and lead to death within several years.
Planning a Wedding
Bob and Constanza initially planned to marry during the summer of 2015. They wanted to tie the knot while Bobby Jr. was with them. But after Bobby Jr. entered Dell Children’s, they moved up the wedding date to Thanksgiving weekend 2014.
On the night of Sept. 23, the family slept together in a double bed brought into Bobby Jr.’s hospital room by Nurse Sara Benscoter. It was not a peaceful sleep for the parents, who woke up frequently, knowing they would soon say goodbye to their son.
But they had committed to getting married with Bobby Jr. in attendance. So instead of Sept. 24 being the day their son would come home, it would be the day Bob and Constanza took their marital vows and, so very sadly, returned home childless.
Throughout Bobby Jr.’s time at Dell Children’s, his parents were impressed with the devotion and helpfulness of the physicians, nurses and other associates who supported and provided for the entire family. The experience of preparing for the wedding was no exception. On this day, while the McVerrys focused on their last hours together as a family, a flurry of activity surrounded them.
When Constanza raced home to change her clothes and bring Bob his wedding attire, she also grabbed photos of family members so they, too, could have a presence at the ceremony. They laid the family photos around Bobby Jr.’s bed while they dressed him in his own wedding attire.
Therapist Adam Carey found a children’s wagon; the parents placed their son inside it with pillows, the family photos and his oxygen tank. Wagon in tow, a small group walked through Dell Children’s halls to the chapel. Word had gotten around the hospital; the wedding procession grew as other Seton associates joined in.
Laura Westerlage, a family friend, stepped up to perform the wedding ceremony. Della Molley-Daughterty, a creative arts therapist, brought in a portable piano and played music during the services. Dr. Renee Higgerson ordered the bride a bouquet from HEB, and Clinical Assistant Ben Cordova picked it up. Child Life Specialist Shelby Samford took photos.
The McVerrys had no wedding rings. Dr. Craig Hurwitz, director of Pediatric Pain and Palliative Medicine, offered Bob his wedding ring to use for the ceremony. Constanza’s sister contributed her wedding ring.
“We vowed that we would always be a family,” Constanza said, “that the love that created him would go on.”
Afterward, the procession continued to the Healing Garden, where gardeners had, just minutes earlier, quickly halted work and quietly departed after news of the need for a tranquil space reached them. After the family was settled on the blanket, the crowd withdrew. Only Nurse Anna Rivera and Dr. Renee Higgerson waited nearby on a bench, to be summoned for any needs.
“We stayed outside for about an hour,” Constanza recalled. “They allowed us to be in control of those last few moments.”
After Bobby Jr. passed away, his body was brought back into the hospital to await pick up by a funeral home. The McVerrys didn’t want to leave him, but they were advised it would be harder if they stayed. Social Worker Rachel Carnahan and Chaplain Chris Dunn volunteered to stay with Bobby Jr.
When Bobby Jr. was hospitalized, his father read to him at the bedside. The book for their last month was the classic, Pulitzer Prize-winning novel, “To Kill a Mockingbird.”
“All kids should read ‘To Kill a Mockingbird’ in their lifetime, so I read it to him,” Bob said. “His eyes would light up and he followed the sound of my voice.”
They didn’t finish the book – at least not yet.
Every couple days or so, Bob and Constanza visit Bobby Jr.’s gravesite, not far from the family home. They bring a lawn chair, a blanket and the book. As of late November, Bob said, they’d shared 22 chapters.
Of course, sadness still lingers. But already, some perspective is emerging.
Bob recalled getting in a hospital elevator with another father on the day Bobby, Jr. was born. They talked, and Bob learned the other father’s child had been stillborn.
“No matter how short our time was with Bobby, Jr., it was still more time than that man had,” Bob observed.