“Hot Dog!”

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.”

 

IMG_2865

 

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?

IMG_2879

The microphone also comes with a headset. It doesn’t work as well, but J thinks it “looks cool.” 

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.

 

P.S.

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.

IMG_2881

 

Julianna is not afraid, of course: Just kidding…It’s just the next adventure!

IMG_2882

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!

M: Hmmm?

J: I’m prepared for anything. I’ve got my BiPAP, my chair, my cart, my microphone, my pillows, my family….

9 thoughts on ““Hot Dog!”

  1. Wow. What a wonderful idea! And an especially eloquent post. As a writer and graphic designer, Julianna inspires me! I’ve noticed that my work has a more playful feel (not always easy as I work in healthcare) Long story short, you guys are amazing! Hugs!!

    Like

  2. Grandma had a great idea coming up with a microphone!
    Really enjoyed Julianna’s Adventures and that fantastic imagination of hers.
    Her imagination is Real and I hope & pray daily that it is a preview of her future! : )
    Your a family that amazes me and inspires me.
    All the best and God Bless each of you,
    Valentino
    Thursday, April 07, 2016
    12:00 noon

    Like

  3. J: I’m prepared for anything. I’ve got my BiPAP, my chair, my cart, my microphone, my pillows, my family….

    (Me) Lorna: I Loved J’s statement above when J said, “She was prepared for anything”. I don’t quite know what to call us (fans would be too “low level” and superficial a word), the people who follow your blogs on a regular basis. As we get to know you J, you are so inspirational, and hearing the things that you say and do, always, always, always…. makes my day. I sincerely hope, somehow in her heart and mind we might be included in J’s definition as Family too.

    Michelle, oftentimes it is hard for a writer to get across what they want to relay to the readers. I always walk away encouraged by what you have chosen to share with us. Your blogs inspire me, your honesty, sincerity and integrity always shines through in them.

    God bless you all,
    Lorna Redd

    Liked by 1 person

  4. I seriously do not know if I’ve ever met a child so in touch with life the way J is. What a beautiful girl, beautiful soul. Wish I could take all of this away……..

    Like

  5. Hi J! I was away for a week having an ADVENTURE! and was happy to come home and find your book on my coffee table. I have read your book several times and just looking at it – just sitting there waiting for me to pick it up and read it again – brings me joy. Your mom’s writings about you and your awesome imagination have helped me to become more imaginative myself. And that’s a wonderful thing…I am beginning to see extraordinary possibilities in the most ordinary of circumstances! What a blessing!! Hugs to you J! Looking forward to reading about your next adventure!!!

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s