Like most kids, Julianna loves surprises. She always closes her eyes and prepares for sheer joy. If the surprise is an old friend (in her case, this usually means an adult who works in the medical field) she does a happy dance (head movements only, but there’s no doubt she’s happy) and draws them into her latest story. It’s like no time has passed since their last visit. If it’s a new toy, her eyes light up and she says “I love it!”
Like many adults, I don’t like surprises. I plan so that I’m never caught off guard. Life is safer this way, less messy and more efficient. Besides, hopeful anticipation can backfire. Disappointment hurts – badly.
Control is an illusion, though, and even the most skillful planners get surprised sometimes.
When I came home on Friday and stepped into Julianna’s room, something was different. Julianna was saying something to me, but I couldn’t focus on her words. Something had changed, and it was throwing me off.
In an instant, it came to me. Her voice was loud — booming by her standards. And she was trying to tell me that she had a “different kind of chicken pox.”
The chicken pox was acquired with a pink marker – J’s idea for April Fool’s. If you look closely at the picture, you can see why J’s voice was so loud: she’s wearing a microphone.
As you may know, J’s choice changed a few weeks ago. For no reason other than CMT from hell, it got soft and weak. It’s led to more quiet moments, and that feels strange
It’s also made me sad. J’s voice is truly her instrument. With it, we have access to her lovely mind and fantastic imagination. Every day, she says something that startles me: how can she know that? And she is so funny.
She communicates without words, of course, but I love her words — and she loves being understood perfectly.
The microphone was Grandma’s idea, and it has worked brilliantly. She can play longer, and with even more spirit. It’s led to more stories, more silliness, more happiness. Who knew that a $30 microphone would provide so much joy?
For the surprise-adverse, life can be scary. Sometimes you lower your expectations – drastically – and tell yourself that it will protect you from disappointment. It works to some extent, but anesthesia is not selective: if you numb yourself from pain, it’s hard to experience joy.
And so we go back our girl J. Life for her has not been predictable, kind or easy, and there have been plenty of nasty surprises and loss. She’s not bitter, though, and she’s not beaten. She takes delight – easily, and often. She is a surprise. If we view things through her eyes, everything looks a little brighter. Unpredictable, still…but not so scary.
The last pages of Julianna’s Adventures depicts J’s love of surprises and lack of fear. It is difficult to keep up with her imagination sometimes, and, to be honest, I struggled with this story a bit. How could I write it so that people would understand? This is how we ended it:
In the last scene, a blue unicorn leads us…somewhere.
Julianna is not afraid, of course: Just kidding…It’s just the next adventure!
On the last page, J sits in the boat, ready and unafraid. We have a globe with a rainbow around it. Julianna asked Christine to draw it that way, but it wasn’t clear why. When I asked her, J said “Because it’s God’s promise to the world.”
PPS: Julianna talks to herself pretty frequently, and the microphone has let us into more of her inner dialogue. This is a pep talk, J-style:
J: Hot dog!
J: I’m prepared for anything. I’ve got my BiPAP, my chair, my cart, my microphone, my pillows, my family….