Mermaids Are Real

We live in a well-manicured suburb with rules about things like paint color. Last weekend, we had plans to do something a bit noisy, and I didn’t want our neighbors to be alarmed.

There were going to be some explosions involving black powder. A pirate was coming over. — and he was bringing a mermaid. How do you explain that to the neighbors?

I decided to post an awkwardly written notice in our HOA’s message board:

There may be just a few minutes of noise tomorrow afternoon between 2-4p. A mermaid and pirate are visiting our kids (I know, sounds weird, but my daughter is homebound and this is a quality of life issue.) Please text me if you have any concerns (or want to watch!)

And it really happened:

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Here’s the backstory:

1) Julianna knows that mermaids are real

It probably comes as no surprise that Julianna loves mermaids. A few weeks ago, someone showed her a video clip of a mermaid swimming in an aquarium, and she was mesmerized. To her, mermaids are real, just like Disney princesses are real

2) A real mermaid contacted us.

I’m still not quite sure how this happened. Someone reached out to someone – who happens to be a facilitator of a mermaid network. The mermaid facilitator made an inquiry and found a mermaid who lives in our area. I got an e-mail asking if Julianna would like a visit from a real mermaid.

3) Of course Julianna would want a visit from a real mermaid!

4) I talked to the mermaid facilitator and then to Mermaid Una, a Portland-based mermaid. I learned that there are hundreds of mermaids around the world. Some make a living out of it by working events and parties, but many do it just because they love sharing the magic of the merworld with others.

As if that wasn’t enough, Mermaid Una would be accompanied by a pirate named Quartermaster Randy Rackham  (who happens to be her husband).

Here are the highlights of the visit:

Everyone but Julianna knew about the visit. When she saw Mermaid Una and Quartermaster Randy come through the door (on a small boat), she was delighted – but not shocked.

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Una and Julianna both happened to be dressed in the same shade of yellow (honest, it wasn’t planned). Julianna admired Una’s jewelry and overall style.

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— After introductions, the basics were affirmed:

Una: Some people don’t believe in mermaids.

J: I believe! But Dadddy doesn’t…

— They talked. J learned about sea creatures from a mermaid’s perspective (Dolphins are chatty; jellyfish are smart.). She discovered the factors that determine the color of a mermaid’s tail (it’s part geography, part choice).

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— J showed Una her princess room. They sang and played and watched The Little Mermaid. Julianna received some treasures, including a mermaid doll she named Gloria.

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— In the meantime, Alex did fun pirate things.

He and Steve shot a flintlock gun. (No bullets, just black powder and some noise — as promised. )

They made huge bubbles with “Soap on a Rope.” (The way pirates get clean, he was told…)

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They said their goodbyes and promised to come back. (J has already asked me when they are available…)

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And that is the story of how a mermaid rolled in on a tiny boat to visit a little girl who believes in mermaids and magic. It’s the tale of how a little boy(who so often is asked to take a back seat to medical necessity) played with a pirate who made big explosions and even bigger bubbles.

Not everyone believes in mermaids and magic, but I think that we can all agree on this: there is beauty in this world that cannot be captured in a picture or described by words. That beauty, driven by love, is magical. It exists even if you don’t believe in it.

I believe in this unquantifiable, unexplainable beauty. It’s bigger than the pain and sorrow of this life, and it is a glimpse of what is to come.

Some day you will be old enough to start reading fairy tales again

— C.S. Lewis

“Play!”: The Importance of Art, Kite and Dress-Up Therapy

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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!

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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.

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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.”

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

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