June 24, 2016 02:10 PM

For Michelle Moon, the 10 days since her daughter, Julianna Snow, died have been a rollercoaster of emotions.

“It’s up and down,” Moon, 43, tells PEOPLE. “Surreal. Painful. An indescribable ache. We’re sad. We’re devastated but so grateful for the time we had, especially the last 18 months.”

Her daughter’s legacy, she says, is love.

“Julianna always said love is a superpower,” she says.

On June 14, Julianna, 5, died at home in her mother’s arms, in her princess room in their Washougal, Washington home instead of passing away at a hospital. Last year she and her mother had a series of extraordinary conversations about what the little girl wanted to do should she get sick again.

Moon shared those conversations on the website ‘The Mighty’ then with CNN.com last fall, unwittingly stirring up an international controversy over what say a child should have in end-of-life decisions.

Julianna had a rare, aggressive, incurable form of Charcot-Marie-Tooth Disease, a degenerative neuromuscular disease that slowly robbed her of her ability to walk, eat or even breathe on her own.

Last year Moon and her husband Steve Snow decided to honor Julianna’s wishes and enrolled her in home hospice care. She’d just come from a series of lengthy hospital stays that left her weaker and weaker each time she came home.

As a result, the family 18 “wonderful” months with Julianna at home in her princess room.

“I’m so thankful for that,” says Moon, a neurologist, who has a blog, and continues to share her daughter’s story to raise awareness about CMT.

She wrote a book and has a crowdrise site to raise money to fight CMT.

“Nothing would make me happier than to help obliterate this horrible and cruel disease,” she says.

Julianna Snow
Photographs by Charles Gullung

One thing Julianna did not get to do before she died was attend a tea party with her kindergarten class, says Moon.

It was scheduled for Monday, June 13, she says, the day before she died.

“She got sick very suddenly Sunday night,” Moon says. “They’d been planning this tea party for weeks. It was the last day of school last week. She had a dress picked out; her hair style; we made decorations so when she got sick it was one of the things that kinda broke her heart.

“Even as she was telling me it’s hard to breathe she said she had to go to the tea party,” says Moon. “And we were going to do it – then she got even worse Monday morning. Then even she conceded she couldn’t go.”

They still hoped they could take her Tuesday or Wednesday but she passed away Tuesday shortly after midnight.

“It was really fast,” says Moon. “It was kinda overwhelming how fast it was. In one sense it was a shock because it was a shock but it was also kind of a comfort. There wasn’t anything we could have done.

“It was a blessing it was so fast because I did not want her uncomfortable,” she added, “and I don t think she was, not for very long.”

When it came time to plan her daughter’s funeral, the tea party her daughter missed was heavy on her mind.

“It seemed like the only way we could do it right,” she says. “It had to be a tea party. Not only that but she hosted hundreds of tea parties throughout her life – imaginary of course.”

Plus, she says, “for her it had to be a celebration of life,” says Moon. “Funeral I think of darkness and sadness, which of course we’re sad. We’re devastated. We had to celebrate her life. That’s the only thing that made sense. I hated crying in front of her. She hated that.”

Julianna's Tea Party program
Charles Gullung

Between 150 to 200 adults and kids turned out for “Julianna’s Tea Party” as they called it, held at the family’s church in Vancouver, Washington.

Julianna's princess dresses
Christina Kang

The room was decorated in pink and purple (Julianna’s favorite colors) and there were activities galore: from nail-painting stations (Julianna always had a perfect pedicure and manicure) to a display of her princess dresses and her treasure chest of toys (kids were asked to take one home that reminded them of Julianna).

The Nail Bar
Charles Gullung

It was “kid friendly,” Moon says.

“Death is a part of life on this earth but it doesn’t have to be scary so I think having it that way was the perfect way to honor Julianna,” she says.

Moon has slept in Julianna’s room nearly every night since she passed.

“It just feels good,” she says. “At first I thought if she dies at home we’re going to have to move. But it’s not like that at all. I just feel really, really comforted by her room and being in there. It’s just felt good to stay there.”

She also feels comforted knowing she and her husband made the right decision to listen to their daughter.

Julianna through the years
Christina Kang

“There is peace amidst the intense pain,” she says. “It’s not easy but overall I feel grateful and blessed.”

And she knows exactly where her daughter is – in Heaven, doing everything she could no longer do when she was alive.

“I think she’s running around,” she says. “I think she is delighting people. I think she is jumping and playing and expressing all the things she couldn’t do with her body while she was here. ..I think she’s just happy.”

You May Like

EDIT POST