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The Life of Kylie, Part Five

Four-year-old Kylie Arnold succumbed to brain cancer in February, but in her short life, she inspired many. This is the last of a five-part series on her life, death and legacy.

Part one of this story is . Part two is . Part three is . Part four is .

Kylie Elizabeth Arnold died at 12:15 a.m. on Sunday, February 26. At around 2:30 a.m., her parents called the funeral home and started to get ready for their arrival. Dustin Arnold and Nicole Anderson changed their daughter into comfortable pajamas, and covered her up. At 3:15 a.m., the funeral home arrived to take the body.

“I told myself it wasn’t those people taking her, she was already home,” Dustin said, wiping away tears. “I couldn’t stand the fact that she had to go somewhere without me. But she was already gone, with the Lord.”

The next week was a blur, Dustin and Nicole said. They had to do all the things you’d never expect to do as the parent of a 4-year-old: pick out a funeral plot, write an obituary, design a prayer card for the service. They threw themselves into these arrangements, knowing in the back of their minds that once they were done, once the wake and funeral were over, there would be nothing keeping the sadness at bay.

Before the memorial services, even Dustin and Nicole didn’t realize just how many people Kylie had touched and inspired. The doors of Moss Funeral Home in Batavia opened at 2 p.m. on Thursday, March 1, to a long line of people, waiting to pay their respects and express their sympathies. And that line didn’t abate until around 9 p.m.

“From 2 to 4:30, I didn’t move,” Dustin said. “There was a steady line of people. I left to get something to eat, came back in half an hour, and the line was even longer. I stood there for the next four hours straight.”

If Dustin and Nicole still had any doubts about the impact their daughter had on the community in which she lived, the funeral would have dispelled them. The procession stretched for more than a mile, cars arcing back toward the horizon as far as the eye could see.

At the service, Kylie's brother Devin Arnold, a budding guitar player, strummed a version of “Amazing Grace” that he had worked on through the week. Rev. Tom May delivered a eulogy, and dozens of pink and white balloons were released into the air, floating heavenward, out of sight, gone.

* * * * *

But Dustin, Nicole and Devin would soon realize that Kylie would never be gone, not really. And they wouldn’t be the only ones keeping her memory alive.

Within days of learning of Kylie’s death, the schools she and Devin attended jumped into action. Both Brokaw Early Learning Center and Long Beach Elementary School held fundraisers to help the family with funeral expenses. They raised more than $1,600.

The schools also sponsored a fundraiser at Culver’s in Oswego, and hundreds of people turned up, standing in long lines at the registers and jamming the drive-thru lane. For the entire day on March 7, Culver’s set aside 10 percent of all proceeds for Kylie’s family, and in the end, donated $1,000 to them.

Nicole attended that Culver’s night, and said she was stunned by the number of people who showed up just to lend a helping hand. Most of them were people she had never met, people who were moved by Kylie’s story. The turnout was “overwhelming, but awesome,” she said.

The community’s support proved invaluable in the tough weeks following Kylie’s death. Dustin and Nicole admitted that they grieve in different ways, and found it difficult to communicate. They shared the experience, and should have grown closer, but dealt with it so differently that they moved apart.

“It was a tough time here,” Dustin said. “But we’re still on the same page, and we’re understanding and supportive. No one feels the pain we’ve been going through. But I know our daughter would not want us to be sad and unhappy. She’d want us to continue living life.”

Devin, as well, had a difficult time grieving, and needed counseling. But it was hearing his sister’s voice one day that helped him get through it. Devin was practicing his guitar, Nicole said, when he heard Kylie speak to him.

“He heard Kylie say ‘brother,’” Nicole said. “He told me and grandpa that Kylie said ‘brother’ to him, and it felt good. It made him realize that he still has a little sister, and he’s still her big brother.”

* * * * *

Kylie will never know the impact she had on Dr. Natalie, but it was, to put it mildly, life-changing.

Over 11 years at Dreyer, Natalie said, she had become less comfortable with the way the business of medicine was heading. Patients like Kylie were sent from one facility to another, with treatments outsourced, and care becoming less and less personal.

She had dreamed of bringing things back to the small-town doctor mentality, and it was her time with Kylie that inspired her to finally set out on her own. 

“Kylie inspired me to re-evaluate and remember how precious life can be,” she said. “You need to go for what you want.”

And so, a few weeks after Kylie’s death, Dr. Natalie handed in her resignation. She’s in the process of starting her own clinic, one that will draw on the resources of the community it’s in. Dr. Natalie said she wants to bring the personal touch back to medicine, and connect with patients the way she connected with Kylie.

Her new clinic, she said, will be dedicated to Kylie. She’ll even have a presence in the logo, a tree with a sparrow on one branch. Kylie loved music, Natalie said, and one of the ways she would use to calm her down while in the hospital was to sing to her. And one of her favorite songs was an old hymn called “His Eye is On the Sparrow.”

Through Kylie, she found a lifelong friend in Nicole, and she found the courage to make her dream come true. She said if anyone had asked her two years ago whether she would strike out on her own, with her own vision, she would have said there was no chance.

“Kylie taught me to be the change you want to see in the world,” she said.

* * * * *

It is April of 2012 in this Montgomery home, and the shock is still new. In the months that will follow, Dustin Arnold and Nicole Anderson will find new ways to communicate, new methods of keeping their family together. In July, the two will have been a couple for 10 years. And in December of last year, Dustin asked Nicole to marry him, and she said yes.

Happier times are ahead. But now, in April of 2012, Dustin and Nicole are still working through their own grief, and trying to see what the future might look like without Kylie here. They are determined to honor her memory.

Nicole said her faith has helped guide her through. She thinks about Kylie constantly, she said, and tries to focus on the happy memories, knowing she did everything she could to help her.

"When I was told there would be no more treatments, I said, 'You know what, God? I’m no longer in control. Let it be what you have planned,'" she said. "I’ve learned to have faith that there is a bigger and better reason."

The spirit is eternal, the body is earth, she said. The spirit carries on. She knows she’ll see Kylie again, and still feels her presence all around.

“I still feel like Kylie is with me,” she said. “That’s where a lot of my comfort comes from. I had a unique and special relationship with her. She knew when I was angry or sad. She would comfort me.

“I still feel her presence so greatly. She is still comforting me.”

Dustin and Nicole plan to start a charity organization for cancer patients in Kylie’s name. Dustin said just knowing that Kylie had a lasting impact on the world, and that her legacy will continue, eases their pain.

“We said that whatever happened with our daughter, we would use it as a positive,” Dustin said. “We’re going to get through together, and be stronger, better people, because she deserves that. She was my princess, the strongest girl I’ve ever had the pleasure to know.

“She was our daughter.”

 

“God saw she was getting tired, and a cure was not to be,
So He put His arms around her, and whispered, ‘Come with me’
With tearful eyes we watched her suffer and saw her fade away
Although we loved her dearly, we could not make her stay
A golden heart stopped beating, hard working hands to rest,
God broke our hearts to prove to us he only takes the best.”

 - Poem written on Kylie Arnold’s funeral card, March 2, 2012. 

Anonymous July 06, 2012 at 01:51 PM
Such a beautifully written story of a heartbreaking tragedy! Although Kylie's family has an angel up in heaven to watch over them now, your story has generated at least one more prayer from me to ask for help from Above for strength and healing for Kylie's family, to overcome the grief and only remember the wonderful memories!

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