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Gracie’s wisdom
A grieving family keeps lessons learned from their 5-year-old close at heart
By CHARY SOUTHMAYD
Article published on Wednesday, May 14, 2008 |
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![[Image]](/content_images/051408_bee-04.jpg) |
| Gracie Purdy is remembered for her wonderful spirit and courage. |
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BELLEAIR – Like any other 5-year-old girl, Grace Giselle Purdy loved her Webkinz, SpongeBob SquarePants, blowing bubbles, dressing up, and ballet dancing – with dreams of being a ballerina.
But, unlike most 5-year-old girls, Gracie was dealt a rare and extremely cruel fate that, after a gallant 9-month struggle, took her life on April 21. Gracie passed away peacefully at her Belleair home in her mother’s arms, surrounded by everything she loved.
Although witnessing the debilitating effects of a brain tumor on their child is something no parent should ever have to endure, Llisiana and Marty Purdy have found comfort in knowing that their precious Gracie was resplendent with lessons about life and what comes after.
Stricken with double vision last summer, Gracie underwent testing at All Children’s Hospital that revealed a shocking and life-changing diagnosis. She suffered from diffuse pontine glioma, a very rare, inoperable tumor of the brainstem. Gracie went through six weeks of radiation; returning to the comfort of her home every night. The intent was to slow growth of the tumor.
Weeks later, she was more like her old self.
Before Christmas, the family was able to travel to Colorado where Gracie and her big brother, Nolan, could play in the snow, make snow angels and have snowball fights, just as Gracie wanted.
“We had a good honeymoon period until early January,” Marty said.
Then there were indications the disease was progressing. Gracie’s speech became slurred and walking was increasingly difficult for her. An MRI revealed significant tumor growth. The family sought the expertise of doctors at Duke University and they scoured the Internet in an exhaustive search for anything that might help their beautiful Gracie.
“All along we hoped for that miracle, a medical advancement,” said Llisiana, who never left Gracie’s side. Day and night she was there to comfort and care for her daughter, never wanting Gracie to be alone.
A chemotherapy regimen was tried, but ultimately didn’t help.
Losing her ability to speak, the precocious and extremely gifted 5 year old learned texting as a means of communicating. A family friend and confidant, Jennifer Tresh, bought Gracie an iphone.
After time, when text messaging became difficult, Gracie would point to letters on sheets of paper Llisiana drew for her, spelling out what she wanted, needed or just wanted to say.
Gracie had a lot to say, and things she wanted to do.
Not long before her passing, Gracie decided to make her dad a salad he could take to work for lunch. She instructed Marty what to use in the salad and she helped put it together – the cherry tomatoes looking like a smiley face.
Gracie insisted upon making an ice cream sundae for Llisiana and Marty, even though she was no longer able to swallow without tremendous difficulty and couldn’t enjoy the sweet treat herself.
“We called it a Gracie Sundae,” Marty said. “She directed the whole thing. Gracie was a big director and told everyone what to do.”
“Gracie was full of spunk, determination, beauty and independence,” Llisiana said. “She was like a sponge, learning everything by observing.”
Through the course of far too little time, Gracie became her parents’ teacher and hero. With the heart-breaking changes that came as her illness progressed, other qualities were revealed.
“She taught us courage, strength and compassion,” said Llisiana. “Gracie never complained. When she had lost most of her abilities and I would ask how she was, she would give me a thumbs up. She was a great communicator right to the end.”
St. Cecelia School in Clearwater, where Gracie was in kindergarten and where a Web cam had linked her to class, closed on the day of Gracie’s memorial service. Hundreds of adults and children attended. The procession to her burial at Serenity Gardens was led by a police escort, with police officers stopping at each intersection along Clearwater-Largo Road to salute as Gracie passed by.
The town of Belleair, which hosted Gracie’s Big Splash last summer, hopes to make it an annual event to raise badly needed funds for research into diffuse pontine glioma, so that someday doctors will have more to offer devastated families. The disease most commonly strikes children between the ages of 5 to 9. They seldom survive one year.
Nolan is certain that his baby sister is in heaven, no longer in pain, and that they will see her again. He prays to God and to Gracie every night at bedtime.
Inconsolable when reflecting that she will never again feel the soft warmth of her daughter’s cheek, Llisiana manages through tears to thank the community, friends and strangers alike, who have offered the family tremendous comfort and prayers.
“Our faith carried us through,” she said. “This journey has revealed so much.”
One day while propped up on the sofa in the family room, the amazing Gracie turned to Llisiana and made an observation that illuminated the depth of her wisdom.
“Mom, life is like a waiting room to get into heaven,” she said.
“Gracie had a mission,” said Llisiana. “She was sent to teach us what we needed to learn. Now her spirit is dancing freely in heaven.”
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Article published on Wednesday, May 14, 2008
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