This drawing looks like an illustration from a children’s picture book: the spunky heroine scores the perfect pair of shoes! Some may wonder why shoe shopping would be part of a children’s story. A bit materialistic? And what’s all that stuff on the girl’s head?

The girl in the story is wearing feathers and bows in her hair. Why not? There’s a tiara too, because she is unapologetically 100% princess. She is enjoying a day out with her grandmother.

The illustrator is our talented friend, Christine. The storyteller is Julianna — of course!

Oct 2015. Christine and Captain J.

In real life, Julianna has never worn a pair of “normal” shoes. She has a terminal neuromuscular disease and hasn’t stood for over a year. She also cannot breathe on her own and wears a mask that forces air into her lungs every minute of every day. As a result, she rarely leaves the house or even her room.

Julianna’s mind is as sharp as her muscles are weak. She is happy almost all of the time, but she knows what she is missing. She knows there’s a world outside of our doors and she remembers when she was able to go out into it.

A few times, we have had this conversation:

J: I don’t feel like I have a life.

M: What??

J: I don’t go anywhere. I don’t do anything.

Heart sinking, I explain all the reasons why we can’t get her out of the house more and I promise to try harder. There’s no condemnation in her words, though. They are simple, stated fact. She already knows, and she accepts. But she wishes that it were different.

With her imagination, it is different. Her brain is always going and going and going (her words), and it takes her on fantastic adventures. In this story, she and Homie go on a shopping spree. They buy shoes and chandeliers. They eat at Red Robin and see a movie. The Julianna in this story doesn’t need five different pillows and a special positioning device to sit up. There are no feeding tubes or BiPAP. Anything is possible.

This drawing, see, is not just a cute picture.  It is just as important as the medications and treatments. The medical stuff sustains her life. This helps make it worth living.

These days, Julianna’s most frequent request is “Play!” She gets through uncomfortable respiratory treatments if we play. She wants to sit up even though it’s getting more and more difficult because it’s easier to play. So we play and draw and we sing and dance. Julianna’s imagination is infinitely more powerful than her disease, and she is surrounded by people who let it soar.

Sept 2015. If you look close, Julianna is actually flying the kite. Her wonderful nurse somehow found a way to make it work. Another wonderful nurse (from her PICU days) gave her the kite. When she saw this photo, she said “It traveled from China to fly in J’s little hands.”

Oct 2015. Pillowcase + ribbon = mermaid, Fancy Nancy style. Another creation by J’s talented nurse.

Oct 2015. This week, J had a picnic with Anna. J: “Will we see wild animals? No dinosaurs, I hope.”