Tuesday, December 18, 2012

Memorial Service Honors the Lives of All Children's Hospital Patients

ACH Memorial Service -2012
Mike and Megan Mellon hang an ornament in memory of their child, Caleb. 
They came from across town, across the state and across the deepest of emotional chasms, walking quietly into a dimly lit auditorium and the heart of a place where their hearts were so recently broken.

One family brought a stuffed blue elephant in a carry bag, the favorite toy of the baby boy whose life they would celebrate on this late Sunday afternoon in December. A father wore the pink hat of his beloved little girl. A couple came with a photo album of their infant son who brought them so much joy in such a short time on earth.

And everyone carried memories that burn strong of young lives gone too soon, like the white lights that glowed from a Christmas tree in front of the large room.

Or like some of the children they would soon hear about - 3-year-old Callie who dressed up as Cinderella and, in spite of suffering from a rare form of leukemia, roamed the hallways of her floor at All Children's Hospital and sprinkled the glitter she called fairy dust on other patients to make them feel better; 1-year-old Caleb who always laughed when wind blew across his face; and 7-month-old Ny'Asia who drew smiles for her distinctive mop of hair.

The tree would take on a special meaning for the guests before they left. But for now, at just past 4:30 p.m., all eyes were on the solemn procession of guests flowing into the Education Conference Center building at All Children's Hospital. The only discernable sounds were the soothing guitar instrumentals played near the tree by Tom Gombarcik, a member of the hospital's materials management department.

Gradually, family members and friends - along with doctors, nurses and hospital staff - took their seats for the start of an All Children's ceremony steeped in sadness and hope, loss and renewal. They had come for the 29th Annual Memorial Service to honor and remember the children who had passed away in the previous 12 months.

For some parents, the thought of returning to the grounds of the hospital so soon was too much to contemplate. But dozens of others knew that this was precisely where they needed to be to help in the healing process, in spite of the emotions that would no doubt come flooding back.

So they returned for the first time since the death of their young loved one - some still openly grieving, some buoyed by the chance to share stories of their child with others who have traversed the same painful path.

From the room's darkness, they experienced something extraordinary. The lives of those children returned in full illumination for all to envision - and embrace.

They came into sharp focus through the touching recollections of a handful of parents and family members selected to speak by the chapel staff of Reverends David Pitt, Tracey Smithson and Catherine Japhet. And they came through the 96 names projected one by one on a large screen at the end of the service, set against images of heavenly rays of light and accompanied poignantly by Josh Grobin's soulful "To Where You Are" and Alabama's "Angels Among Us."

But just as remarkable was another sight prior to the service. Around the room, you could find people who felt compelled to attend even though they didn't have to be there - various members of the All Children's medical staff who had fought so hard for these children, developing deep bonds with them and their families, and administrators from the Ronald McDonald House, where weary parents had often slept and ate to the maintain strength they needed to carry on.

Dr. Stacie Stapleton, who specializes in treating children with brain tumors, stood in the hallway with a colleague before taking her seat inside. This was the sixth year she had come to the memorial.

"Part of it's for me - just to have some closure to the patients I've lost over the whole year," she says. "But more than anything, I want to be there to support the family."

As the start of the service approached, Dr. Gregory Hale, a pediatric hematologist and oncologist, sat by himself in a moment of reflection.

"We're very closely involved with the patients," he says. "We're there at the beginning when they start their battle. We're with them for an extended period of time and certainly through some intense times. Typically we're still with the family at the time the patient dies, and I think coming here allows us the sense of remembrance for all the patients we've cared for over the year - and a time to see the family and re-connect and let them know that they weren't a number. That they're part of our team."

Pediatric Intensive Care Unit nurse Ryan Oliver, like all the nurses of the PICU, shares in the powerful sense of loss when a child dies. He helped in the care of a number of kids being honored in the memorial and shares in the sense of loss.

"I think we always say, they're not our kids, but in a way, they grow to be part of our family," Ryan says. "For a lot of us, we don't forget the kids as they pass on. Their names still come up. For a lot of us, it gives us a reason to come to work the next day. Some of our children spend a day, a week, a month - or a year of their life with us. And if a kid doesn't make it, we all go through the grieving process."

Another familiar member of All Children's medical staff stood alone by the wall in back of the room. This marked the 24th year that Dr. Perry Everett, a veteran critical care pediatric physician, has attended the service, only missing in years he had to be out of town or working.

"My philosophy has always been that I take care of the family, so this is part of taking care of the family," he says. He also echoed a feeling expressed by Dr. Stapleton: "But this isn't just for them - it's for me. All of this is part of human healing. And I get the sense that many of the parents and family members lose a huge burden when they come back."

With people still arriving, the pastoral staff decided to wait an additional 15 minutes before starting the service. Then, Rhonda Cofield, Director of the Integrated Care Management program, stepped to a podium at the front of the room with words of welcome and support. Tracey Smithson recited an opening prayer to the hundred or so guests in attendance. And David Pitt moved to the microphone to ask for a moment of silence, broken only by innocent voices of little siblings in the audience too young to understand what was unfolding around them.

"I'm grateful that there is a God who is here in this moment for us and is aware of each of your hearts - what you think in this moment and what you feel," he says. "And I guess it's not just in this moment, but every day as you remember your precious child. ..."

He found meaning in the very fact that so many had come to the service: "There's no question that by virtue of the fact you have chosen to be here today demonstrates to me a lot of courage, because you are walking through this moment again. There's nothing easy about coming back to the place where your child died, and we all recognize that."

Recognizing the children was what this day was about. So the pastor then invited a pre-selected group of parents and relatives to step forward and speak - members of a half-dozen families who had expressed a desire to share the stories of their child. The tales that followed conveyed the glow of brief lives bravely lived, painting pictures in memories and anecdotes that washed over the room with an overriding spirit of power and love.

Some parents spoke with a sense of calm and ease, others with the heartache and tears still choking their words. One mother couldn't speak at all amid the pain. So she  
stood silently alongside her mom, while her grandmother recollected what made their family's beautiful baby girl so special.

While every story was different, each evoked a tangible image of a child that had forever touched many others no matter how long their live had lasted.

Some of those who spoke during the service - and lingered to talk after it had ended - expressed another similar sentiment: They enjoy talking about their late child, and draw a strength from doing so that actually helps sustain them through the grief.

There was Linda and Roger Anderson, who had driven three hours from Melbourne - with 8-year-old son Coleman and 6-year-old daughter Caitlyn - to celebrate Callie, the little girl who loved to dress as Cinderella.

She was diagnosed with leukemia at 2-1/2 and would eventually undergo a bone marrow transplant, spending a total of 389 days hospitalized before losing her battle in July. She liked to wear pretty dresses, her mother explained to the audience, because they made her feel prettier after she lost her hair during treatment.

"If I dressed her in something plain, she would say it wasn't pretty enough," Linda reads from her notes.  "We remember Callie running the halls in her Cinderella dress and clicking heels, sprinkling her fairy dust on the sick kids to help them feel better. That was her way to get out of her room, because she had a job to do - to take care of the other kids. And then she'd sprinkle fairy dust on the doctors and nurses to help them take good care of all the kids."

After the service, Linda would share a story of a 15-year-old girl from Pakistan in the room next door. She never wanted to leave her room. So Linda encouraged Callie to visit the girl, say hello and sprinkle her fairy dust. "I'd tell the girl, 'Come on, Callie's out walking, you need to come out, too," Linda recollected. Finally, the girl decided she could get out her bed and walk up and down the hall, too - an important step in recovery. "She told me Callie was the one who had inspired her to do it," Linda said. "She touched a lot of people with her great spirit and how hard she fought."

She and her husband will never forget that. But there is another memory that lasts well, and one they always relate with the story of Callie: the gratitude to the All Children's doctors, nurses and support staff that helped them each step of the way.

"The nurses and doctors always went out of their way to help us," she said. "But it wasn't just at the hospital. It was at the outpatient clinic, where we spent a lot of time, too. They just did a great time of helping us feel good and getting us through that difficult time."

Valerie Brown, a minister in Bradenton, spoke on behalf of her granddaughter, Alexis Salem, memorializing Ny'Asia - the infant who died at seven months. She was born with a heart defect that made her vulnerable to a virus that ultimately took her life.

"Ny'Asia was not with us a long time but she was like a burst of sunshine in our lives when she was here," she said of her great-granddaughter. "She was a beautiful little girl and her hair was her signature. She had a head full of hair, unusual for a newborn. She was a very well-loved baby, but after seven months the Lord saw fit to take her back home.

"I want to say that I appreciate All Children's Hospital. I'll say that there is no place like All Children's - all the staff, the nurses, everyone who played a part in Ny'Asia's life, I want to say that I thank them and I appreciate them so much. They were patient. They were kind. They were compassionate. So we want to say thank you, thank you, thank you."

Megan and Mike Mellon of St. Petersburg only enjoyed the presence of their bubbly son, Caleb, for 54 weeks.

He was born with an array of serious issues, including suffering from hydrocephalus (water on the brain) and an omphalocele, leaving his organs exposed on the outside of his abdomen. After surgery to repair his omphalocele, Caleb was up well enough to return home for a time. But he took a turn for the worse after shunt surgery, then developed an airwave infection and never bounced back.

Yet even amid so many challenges, Caleb had a radiant personality and an intuitive way of connecting with people before he finally began to fade.

"Caleb came into the world fighting for his life," Megan told the audience in a steady voice. "We were all unsure of his ability to triumph. In fact, the months leading up to Caleb's birth were spent preparing for his possible death. But Caleb proved to us that he was a cheeky little child and that he was going to rise to the occasion."

Megan and Mike then recited an array of sentiments, cast through Caleb's eyes, that captured the sunny way he saw the world. Each took turns reading lines such as these:

"The sun is bright, so close your eyes and squint tight and allow the light to warm your soul."

"The wind is funny. When it sweeps across your face, it tickles. So every chance you can, enjoy it."

"Hair, it's meant to be played with. Faces, they're meant to be touched."

"Smiles are contagious Give it a try."

"Play, play and play, and if you don't feel good, just play some more."

"Just because it was a short life, does not mean it was not everything God intended it to be. Life does not have to be long to be perfect."

When all the parents and relatives were finished speaking, Tracey returned to the podium to read a poem that likened the children to shooting stars, illuminating the heavens. And then she explained the symbolic, closing phase of the ceremony.

Upon arrival, each family had been handed a heart-shaped ornament bearing their child's name. As that name appeared on the big projection screen, family members were invited to walk to the front of the room and place the ornament on the lighted tree. Following the service, families could then return to tree and take the ornament home with them as a treasured keepsake of the child.

As the names rolled by and the music filled the room, parents slowly approached the tree that had suddenly become a new link to their child - reaching out to branches that seemed to reach back with a reassuring message that a lost life lived on.

When the final name had appeared and the last prayer had been read, families were invited to stay and talk, and enjoy refreshments in the back of the road, including cakes inscribed with the words, "Angels Among Us."

The Mellon family, including young sons Josh and Williams, had Caleb's ever-present blue stuffed elephant, which they take on all their family outings. There were no tears for them this day, only smiles and warm memories for baby Caleb - and a sense of feeling enriched and uplifted by the event. "We love talking about Caleb - and even though we miss him, we cherish the opportunity to share him with others because he taught us so much," Megan says.

And she expressed something that could have spoken for many on this day.

"We found it so cathartic to be with other moms and dads who have walked where we walked."

To travel a road through darkness and into the light, their way guided by the memory of a lost child who - on this December day - burned bright for all to see.

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