In medicine, being “unremarkable” is good. We want our brain scans, nights in the hospital and test results to be unremarkable. Unremarkable means no tumor, code blue, or infection. It sounds boring, but when your child is medically fragile, unremarkable becomes your dream.
As I shared in a previous post, Juliann’s fourth birthday was difficult for me. 2014 was an all out battle against her disease, and we were failing miserably. We tried so hard to do everything right, but we simply could not keep her out of the hospital.
On her fourth birthday, I made a white Hello Kitty cake with pink sparkles. It was my attempt to give Julianna something “normal.” She took one bite, choked and threw up. We shifted from celebration to oral suction and worrying about another hospitalization. We had been battling this all summer. Julianna was losing her ability to swallow, and she wasn’t tolerating feeds through her G-tube (catheter into the stomach that delivers nutrition.) In that moment, I felt defeated: I couldn’t even give Julianna a taste of birthday cake. Was it really too much to ask?
Fall 2012. Before all her hospitalizations, she could eat cake.
Aug 2014. The calm before the storm.
Fast forward one year. Things are so different now. In some ways, they are worse: Julianna has lost all ability to swallow, and she is weaker. Her disease still has the upper hand in the physical realm. Her spirit, though, is thriving. She is strong, fearless and happy. It was this way all along, but because I focused all my efforts on attaining “unremarkable”, I lost sight of what is truly magnificent.
Julianna turned five this week. There were a few cakes, but no expectation of achieving what is “normal” for others. This is what happened during Julianna’s remarkable fifth birthday week.
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Julianna told her own story, and, in her mind, she has no limits.
When Homie is in town, she sits with Julianna at night. This week, Julianna told a story about their perfect day together:
Summer 2012. A perfect day with Homie would start with fabulous outfits. I think that this is the inspiration for Homie’s flower dress in J’s story.
- They share a bunk bed. Homie gets the top bunk, but she is scared of heights, so J must help her up the ladder.
- In the morning, J puts on a blue dress with a bow around her waist. She wears a blue tiara, feather and bow in her hair. Homie has on a flower dress.
- They go to the shoe store and each buy two pairs of shoes. J gets pink high heels and blue “low heels”
- They go to Red Robin for lunch, and J has mac and cheese.
- Last stop – chandelier store!
In real life, Julianna cannot scratch her nose without help. She has never worn “normal” shoes and it has been at least two years since she has been in a restaurant. In her world, she wears high heels to Red Robin, helps Homie climb a ladder, and she has managed to find a store that stocks just chandeliers. Her world is pretty great.
The future belongs to those who believe in the beauty of their dreams.
— Eleanor Roosevelt
2) She got to play in the sand.
J isn’t able to get out into the world, but she has people who bring it to her. E, her wonderful nurse, brought back some sand from the Oregon coast.
Oregon coast in a box
You don’t need to be the tide to rise and fall,
you don’t have to be a wave to touch the shore;
just be a little sand-grain and feel them all
― Munia Khan
3) She was extra fancy and completely fabulous
Aug 2015. Birthday. This was her evening outfit. (Yes, she had an outfit in between her day clothes and PJ’s).
Aug 2015 – Day after her birthday. Princesses can have tattooes, as long as they are sparkly and temporary.
The inspiration of this birthday bouquet was Fancy Nancy. Because all floral arrangements should have feather boas. (Courtesy of J’s incredible palliative care volunteer).
Aug 2015 – Day after birthday. Princess casual includes rose colored specs.
Aug 2015. For the party, she had tiara, sash and statement necklace.
Sometimes it’s enough to just have your cake. I know it seems strange to get cake for someone who cannot eat it, but J appreciates fabulousness.
More is more and less is a bore.
— Jean Arpel
4) She brought people together.
Social lives and travel are casualties of J’s condition. We’ve accepted it, but we miss spending time with loved ones.
This year, we were far from alone. All week, people blessed Julianna (and us) with their presence. In this busy, increasingly technology-dependent world, they gave her what is most important: time, love and attention. And, as always, good conversation. I believe that these are the things that Julianna lives for.
Aug 2015. J and D, our favorite PICU nurse. She helped gets us through some of our worst days.
Aug 2015. J and one of her handsome baby cousins. His onesie says “Tough guys wear pink.”
Aug 2015. J with C, her “best friend” from the PICU.
Friendship is unnecessary, like philosophy, like art…. It has no survival value; rather it is one of those things which give value to survival. – C.S. Lewis
Julianna Yuri 