A line from a Christmas carol is one of Mary Kramer’s favorites, regardless of the season.
She couldn’t escape it now if she wanted to: “A thrill of hope, the weary world rejoices.”
That phrase from “O Holy Night” relays with vibrant intensity the effect her daughter Emily had on everyone she met.
“She taught us all that even under the most difficult circumstances, there is joy to be had,” said Ms. Kramer, a member of Sacred Heart Parish in Rich Fountain.
“She taught us how to love — to love more, to love unconditionally, to love deeper,” said Emily’s brother, Phillip Kramer.
Born with a rare genetic condition that affected her immune system, Emily “Emmy” Kramer weathered a constant, relentless wave of medical emergencies from the moment of her birth 19-and-a-half years ago.
Not one of her 7,128 days in this life were free of pain, illness or discomfort.
She spent about 1,400 days — four to 12 weeks of every year of her life — as an inpatient at St. Louis Children’s Hospital, was airlifted 17 times, and was transferred by ambulance close to 50 times.
“But she very consciously chose to push with all her might through the difficult things and live life so joyfully,” said Ms. Kramer.
“Emmy stood faithfully to be an example of sacrifice, empathy, compassion, strength and most of all joy,” she said.
The young lady once known to readers of The Catholic Missourian and other local media as “Baby Emily” ended her earthly journey in the pediatric intensive care unit at St. Louis Children’s Hospital, on Nov. 29, from complications of infection and disease.
She passed away cradled in her mother’s arms and surrounded by her brother, sisters, brother-in-law and father.
“She’s finally free and her burdens are lifted, and she’s not suffering anymore,” said Ms. Kramer.
Emmy was the youngest of five children born to Mary Kramer and Dale Kramer.
The family steadfastly rallied around Emmy while her mother became her caregiver, medical manager and constant companion.
“I realized that caring for Emmy and helping her through her difficult journey was my calling, and it was my absolute pleasure and privilege to care for her,” she said.
Even though Emmy spent most of her first months of life hooked up to a ventilator while trying to recover from a massive open heart surgery, her infectious smile, wicked wit and boundless charisma helped her bond with people.
“Anyone who came into contact with her immediately became inspired,” said Ms. Kramer.
“Emmy was our life coach,” stated Jackie Steuber, a physical therapist at Capital Region Healthplex in Jefferson City, who began working with Emmy when she was a toddler. “She was our hero. And she was our good friend.”
Father Anthony Viviano, who is now pastor of St. Joseph Parish in Westphalia and St. Anthony of Padua Parish in Folk, got to know Emmy and her mother during a hospital chaplaincy internship in St. Louis when he was a seminarian.
“When I met them 12 years ago, her mom told me that they had already gone through many helicopter life flights and dozens of ambulance transfers from Osage County to St. Louis Children’s Hospital,” he recalled.
“Yet, Emmy was filled with joy,” he said. “She was a young lady of faith, a young lady of hope, and someone who inspired all those who came into her path.”
From a young age, Emmy was aware that her situation was different from most people’s.
“But you know what? Every day, she made a choice to be like ‘let’s get through the hard stuff, and then on with the good parts of this day whatever tiny part that may be,’” said Ms. Kramer.
At first, Emmy’s mother frantically pursued treatments and remedies that would hopefully lift Emmy to normal health.
The family realized over time that this was God’s and Emmy’s journey, and it would be different from what was expected. There was no “fix,” and they all had to make peace with the situation.
They turned to friends, fellow parishioners and a growing network of neighbors near and far for prayer and support.
They did whatever they could to mitigate the trauma Emmy experienced from constant close encounters with death.
“All along, we thought we were carrying and caring for Emmy,” Mrs. Kramer recalled. “Then, somewhere in the middle, I can’t really pinpoint when, we kind of realized that she was the one carrying our family along and teaching us.”
“She gave us all purpose in life and made us all better people,” stated Emmy’s sister, Mackenzie Brune.
Emmy led them to forge unbreakable bonds with doctors, nurses and other members of her medical team.
They were enchanted with her sassy resilience and ability to live in the moment and find joy in little things.
Most of all, they were amazed and deeply moved by her indomitable will to survive.
“She loved to celebrate life even when her body was limiting her to do so,” noted her pastor, Father William Debo of Sacred Heart Parish in Rich Fountain and Holy Family Parish in Freeburg.
“Her laughter could open the door to most hardened hearts,” said Ms. Steuber, her longtime physical therapist. “She quickly became a ‘celebrity’ to those who met her or encountered her story.”
At age 10, Emmy was also given the support of the Palliative Care Team who helped her family understand that life is meant to be lived, not merely endured.
“You just gotta learn to find your joy each day, and you find it in the small stuff,” said Ms. Kramer.
By age 11, Emmy understood that how she handled her suffering would be an example to others.
“One day, out of the blue she said, ‘Mommy, I know God made my body this way so I can help other people...’” Ms. Kramer recalled.
“And then she just collapsed in tears, and I didn’t know what to do,” she said. “So, I just took my baby into my arms and held her through it.”
Emmy went to school some of the time but could not be around too many of her peers at once and could only manage the energy to go for an hour or two a couple times a week at best.
But still she continued to fight for those opportunities because it brought such happiness to her.
Family members and friends began organizing an annual 5K walk and run to help cover medical expenses and build up esprit de corps.
“It was a big draw of support for Emmy,” said Ms. Kramer. “Some of these people she’d only get to see once a year but she so looked forward to it and it leant such support to her personally.”
Ms. Kramer also created the Emmy Kramer “Ultimate Survivor” page on Facebook to share news about her and to let Emmy’s journey inspire others.
Emmy focused on attending her graduation ceremony at Fatima High School in Westphalia last spring, and the biggest event of being in her sister’s wedding at Sacred Heart this fall.
Emily loved Christmas and would count down the days to it. She installed a countdown on her phone and constantly reminded everyone of how many days there were until Christmas, even when she was in the hospital.
Last year, she asked for some of the proceeds from the 5K event in order to buy presents for a child through a Christmas program for people in need and she spent time carefully choosing gifts.
“It was a great thing,” said Ms. Kramer. “She had a big, compassionate, empathetic heart. She got to feel that joy that comes with helping others.”
“Not done yet”
Emmy’s Funeral Mass drew friends from near and far to Sacred Heart Church in Rich Fountain.
They included doctors, nurses and other health professionals from as far away as St. Louis — some who had known Emmy since her birth, others for only her last days.
Fr. Debo, in his homily, noted that through friendship and fidelity, Emmy had led many people closer to Christ.
“Because of her great spirit, she has helped make it possible for everyone here today to go beyond these doors of this church and say ‘yes’ to God because of our faith,” he said.
“Let Emmy be that light, that shining example for all of us as we follow Christ, as we place our trust and hope in Him,” the priest said.
Afterward, three of Emmy’s main doctors told Ms. Kramer, “Your work here is not done yet. There are things you can do to uphold Emmy’s legacy.”
“She was absolutely faithful to her calling, to reaching out to people and lifting up the downtrodden,” Ms. Kramer noted.
“I think her story can help so many different kinds of people in so many different sorts of way — especially the ones who are struggling to find energy to live their faith or their calling,” she said.
“She made us all better human beings,” Ms. Kramer continued, “helped us unleash strength within that we did not know we possessed, taught us to find joy in situations where no one would imagine joy could exist — and most of all taught us to walk our life journey with grace and unwavering faith.”
Memorials or condolences can be mailed to the Kramer Family, P.O. Box 234, Westphalia, MO 65085.