Title : The sky hospital: a tea party to say goodbye
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The sky hospital: a tea party to say goodbye
and so, friends and family arrived Saturday morning at City Bible Church in Vancouver, Washington, in dresses flower print shirts and pink polo shocking, boas bright colors and bright ties bolero to celebrate the life of Julianna Yuri snow .
Your choice to forgo medical interventions at the end of his life was done with the blessing of their doctors and nurses at Children's Hospital in Portland Doernbecher.
"We pulled the door many times death last year, but she's sicker now than it was then, and I do not think we could pull it through another major crisis," one their intense care unit nurses, Diana scolaro last fall said.
"She does not have long to live," pulmonologist, Dr. Danny Hsia, added at the time. "For her, there is no light at the end of the tunnel."
During his life, the story of Julianna became known to millions of people and sparked a conversation about the role that children have to play in making their own medical decisions at the end of his life.
and in death, he had a funeral to match its magnificent, bright, auto princess.
A funeral with a cupcake bar
could not use his arms or legs or breathe or eat by herself, but Julianna did not know that his life should be more than just fabulous.
Every morning, she donned a princess dress and tiara. She elaborate games with her dolls and fantasy animals was forged. He insisted nails polished and asked to have spilled glitter on your fingers.
"There is no such thing as too [Brightness]," she said during a visit with her last fall.
And she loved tea parties.
So his parents - Dr. Michelle Moon, a neurologist, and Steve Nieve, a former fighter pilot Air Force - organized a tea party instead of a traditional funeral.
"It will be great, elegant, colorful, fun, whimsical, lover, bright, cheerful, gorgeous, "Luna blogged last week after the death of Julianna. "I'm waiting for is an over the top, an explosion of joy that brings people together to have fun and enjoy. That's what he liked to do, and what was so good at facilitating" he added in an email to CNN. "We want to make J proud."
When family and friends arrived at the church, pink balloons they received them, along with a pink poster made by his grandfather Tom snow.
"Julianna Text: arrived in heaven'm cured Thank you for your love I hope to see you in time God!" Read the sign.
To the right was a table full of toys Julianna, tiny dolls and figures of Hello Kitty and ponies with long tails and pink rabbits and bears and mice that populated the stories up.
Children were welcome to take your toys and go home "hospitality J Rules for toys (and people)" in the table attached a poster with a purple edge.
Make sure they feel welcome in your room.
give them a name.
OK if the name is the same as yours.
Introduce your other toys.
When watching something on TV, turn them over so they can see, too.
Beside toys, a long table took sandwiches out of tea - cucumber and mint tuna salad, peanut butter and jelly - but not egg salad, because he thought Julianna salad egg was
"stinky."Another long table out sweet tea party as buns and biscuits mint from her grandmother.
On the back of the church, friends and family and frosted cupcakes decorated in a season and painted her nails into another.
Wood carvings bunnies and teapots, made by his grandfather, they decorated the walls. He also easels bright pink to contain family photos. Signs of food and nails and cupcake bars were written in fancy script and brightness of the moon cousins.
A video family and Julianna's favorite song - Carrie Underwood version of "Hark The Herald Angels Sing!" - Played in the background."Julianna worried about the details, so that [are] a lot of details here," Luna wrote.
It was a funeral in terms of Julianna.
last days of Julianna
Looking back on Sunday before Julianna's death was "a gift," says Moon.
She and Julianna dyed hair rainbow colors of a Barbie and made pencils and fabric flowers.
it was sunny and warm, and Julianna were carried outside. Moon said he felt he could relax and enjoy the moments with Julianna and her brother, Alex, 7.
in the afternoon, a nurse hospice favorite Julianna, Juliah Larson, came for a visit.
Then on Sunday night, Julianna began having trouble breathing. Respecting their wishes, his parents made him as comfortable as possible, but not taken to the hospital.
With less than 24 hours old, Julianna got in one last joke. Sed, called "ice ice baby", citing the Vanilla Ice song.
"She has a lot of references 80, since it was my decade," Luna said.
And he slipped in a last observation fashion to her mother, who never so fabulously dressed as Julianna would have liked.
"I wore a light gray color sweater she had not seen before," said his mother. "She said, 'What's that?", Which is the code for Julianna' You can do better than that. ''
In the early hours of the morning of June 14, Julianna died.
"She died at home in his room princess and my arms," said Luna . "he died exactly where he wanted to die."
"She was beautiful after 18 months [in] palliative care. She was not after a year of horrible hospitalizations, "he added.
" It comforts me to know what happened in the way he wanted it to happen. "
now are focused on raising money to fight the disease had Julianna, Charcot-Marie-Tooth, through a book he wrote and a page fundraising .a legacy of love
parents of Julianna say one of the things they learned from the year and a half of his life is that priorities are important.
Before his priority has been the treatment of their disease.
However, "it became very clear that there was nothing we could do to save her from her disease," Snow said in a speech at the funeral.
After so Julianna still received attention, such as treatments to ease breathing, but family priorities changed.
"Do not stop doing medical stuff - we did a lot of medical stuff -. But it was not our goal but it was at the bottom," Luna said. "Instead, we've done things I loved priority. That really helped him thrive and helped us enjoy our time with her."
Julianna flourished during this time, his parents say, with his nail polish and crafts and stories and jokes.
"We got to enjoy and love Julianna, and his spirit and imagination thrived because love. We came to share their love with the world," his father said.
Moon and Snow said they expect the legacy of Julianna is that the unconditional love and joy.
"The power of love - it really is so powerful," Snow said. "In love, you can have faith you can have hope, you can have peace."
OR to quote Julianna , "Love is a superpower This makes good evil." .The post The sky hospital: a tea party to say goodbye appeared first on https://www.flynewsonline.com/2016/06/21/heaven-over-hospital-a-tea-party-to-say-goodbye/
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