Love, not pity, was 5-year-old Julianna’s lesson

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5-year-old Julianna Snow had a way of turning things on her head

She couldn't do what other kids did but never felt sorry for herself

CNN  — 

Saturday, I wore a floral dress with bright splashes of pink and purple to a funeral.

Putting on that dress – the same one I had worn to celebrate my daughters’ bat mitzvahs – felt uncomfortable. It felt disrespectful not to wear black or navy blue to a funeral. It didn’t feel right.

But such was the life of Julianna Yuri Snow. She had a way of turning things on their head.

When I first met Julianna a year ago, I also felt uncomfortable. It’s never easy to visit someone in hospice, but especially a 5-year-old. What do you say to her? What do you do?

Here’s what you do: You follow her orders to hold her little princess figurine so she can tell you the elaborate story of how the hero princess saves the world from the ugly monster villain.

You hold a peach fresh out of the fridge against her hands because she likes the feel of the fuzzy coldness against her skin.

Julianna knew that other children could run and jump and play and eat food instead of having it delivered through a tube. She was well-aware of what she couldn’t do.

But she didn’t show any signs of jealousy or resentment. Or as her mother said at her funeral Saturday, Julianna never felt sorry for herself.

In a video played at her funeral, her father, Steve Snow, carries Julianna into the house after a long hospital stay in which she was repeatedly subjected to painful procedures for which she could not be sedated, such as having a tube stuck down her nose and throat and into her lungs.

She doesn’t look like a traumatized child, though. She walks into her living room, decorated with balloons and banners. “I love all this stuff,” she says with a huge smile on her face.

In my two visits to Julianna’s house last year, I watched her as she watched her 7-year-old brother, Alex, run around the house and jump off the stairs and slide down the banister. She laughed at him, never showing any signs that she wondered why she couldn’t do those things, too.

When we sat down to a pizza dinner, her father took a piece of cheese and asked whether she wanted to taste it. He rubbed some on her lips so she could lick them.

And did she want any pineapple? She nodded. He rubbed some of that on her lips as well.

Julianna sat at the table with us as we ate pizza, and all she got to do was lick her lips. Why wasn’t she resentful? I don’t know. Maybe it was because she was so surrounded by love and had such big plans of her own. She had stories to make up. Crafts projects to design. Dolls to direct. Princess dresses and tiaras to try on. Movies to watch.

She was so busy that when her parents told her it was time for bed, she had pithy comebacks. “God says Julianna is not tired!” or “Bed with a circle and a line through it!”

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    She had other Julianna-isms, often prefaced with “Let me tell you something.” Sayings such as “I’m bossy but a little bit polite” or “I triple madly love you” or her parents’ favorite, “Love is a superpower. It makes bad people good.”

    Julianna certainly had every right to feel resentful that she was, as her father put it, imprisoned in her body. All of us – and I include myself – sometimes get mad when life is unjust. It’s human nature, and I wouldn’t judge anyone for feeling that way.

    I’m just noting that I met someone who had every reason to feel that way but didn’t, and it was stunning.

    Her parents hope Julianna will be an inspiration to others. As her father said at her funeral, “Whether you’re a prisoner of a disease, lost in the wilderness of life or tossed about on the sea of disillusionment, there will be a light to follow.

    “It may be hard to find, but it is there.”