Unexpectedly Easy

It’s been one week since Julianna woke up with the frog that turned into a cold that sent us into a tailspin but ended up being a miracle. This week, we were scared, so sad, then determined, incredulous, thankful, joyful – and busy.

It was a lot. It has been a lot.

It has also been unexpectedly easy. Julianna is almost over her cold, and it hasn’t been the scary, round-the-clock ordeal that we imagined. We have all, in fact, actually gotten more sleep than usual.

When you have a medically fragile house, “easy” is not your usual modus operandi. Your lives and routines are complicated. You are always vigilant lest the other shoe drops. It’s no wonder we don’t sleep very much or well.

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J is never tired, but I am.

But if we follow Julianna’s lead, things don’t really have to be  that difficult.  Life is not always easy for her (she admitted this week she was scared of this cold), but she spends her energy on things that are fun and happy and beautiful. She makes life look easy.

So in the spirit of easiness, I am not going to toil too long over this blog post.  This is a bunch of random, mixed-up moments that I want to remember forever.

An ultimatum, Julianna style.

Julianna often wakes up too early. We try to coax her into staying in bed until at least 7AM. We turn on soothing lullabies, smooth her blankets and kiss her forehead.  Most of the time it works, but one morning last month, it didn’t.  She was still half asleep when she said this, but her intent was clear.

J: (to Steve) If you don’t get me up, I’ll put a sparkly bow on you.

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J likes to put a bow on it.

A good historian:

In medicine, a good historian is someone who can succinctly deliver pertinent information. Julianna is one of the best.

A few weeks ago,  J demonstrated her mastery of the pain scale, and showed her stoicism too:

J: My left arm hurts. It’s a 5.

M: Julianna, what does a “5” mean?

J: You don’t cry at a “5.” It means medium. Less than a lot.

M: When do you cry?

J: A “10.”

We gave her Tylenol that night, and the next morning, J declared her pain level to be “zero.”

The Quality Time Enforcer

J stopped napping a long time ago, but we still make her go down for a few hours each afternoon to have a long “body break.” (She has scoliosis, and it’s hard for her to sit up for prolonged periods). We usually put on something for her to watch. J insists that we watch with her.

One day, her nurse, E, used this time to do some (gasp!) charting.

J: E, if you don’t watch the movie, you’re going to be fired.

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J and E.

Just last night…

We’ve just done her bath, and I am dressing J. It’s not going fast enough.

J: Get my naked off!!

M: What?

J: I mean, get my clothes on..

And because it’s almost Christmas

J’s favorite song is “Hark the Herald” She sings it year round. This was recorded in July.

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One of my favorite pictures of J&A. Dec 2013. Photo by Jennifer Rialtos.

10 thoughts on “Unexpectedly Easy

  1. Your Juliana is a little girl with an old soul. Beyond sweet, beyond wise for her years. She is so very much in our prayers, as are her mommy, daddy, and brother as well. Maybe one day, you’ll write a book of this journey, with all her Julianna-isms………her grasp of sarcasm is absolutely dee-lightful and her wisdom shames the wisest of men. God bless all of you.

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  2. Michelle,
    Thanks once again for the update and sharing with the world Julianna’s life as
    well as her family’s concern, hope and
    love for her. Her photo is the screen saver
    on my cell phone. Each time I send or
    receive a telephone call, email or text
    message I say a pray for her!
    Hope our package arrived with our Christ-
    mas cards and gifts. Wishing you and your
    family a Very Merry Christmas and so happy
    Julianna is Home, the opposite of the hospital . . .
    Best Wishes & God Bless each of you!
    Valentino
    Sunday
    Dec 14, 2015
    8:15am

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  3. Things I learnt from this post –

    1. Gonna start using “get (his/her) naked off!!” from now on, when I see friends helping their kids put on clothes. Thank you Julianna, this was a very useful & fun new thing to learn today.

    2. You don’t cry at a 5, you cry at a 10 – yes Ma’am Julianna! Just as you need routines to keep your colds away, part of my routines to keep myself healthy & well is to see a psychologist .. to keep my worries (it’s called Anxiety. Ask mom/dad haha) away. We talk about difficult feelings a lot! – I shall tell him that next time, that I will not cry unless the difficult feeling is a 10. Hahaha 😉

    Why are you so cute, brave, funny, strong & absolutely entertainingly endearing?!

    Love,
    Eudora (Jiejie)

    Ps, I’ll teach you a little something in return for what I’ve learnt from you today –

    when you have to choose a favourite movie to watch/nail colour to paint/toy to turn into a mermaid princess, but you have too many choices & remain undecided – furrow your eyebrows, wrinkle your nose (stinkeye face) & slowly, resolutely say – “BUT MY BRAINS ARE NOT DONE COOKING YETTTTT!!” –

    I’ve heard that’s kidspeak for “I’m thinking about it!!!!” Try it & let me know what you think 😉

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  4. I’m so happy to know she’s okay. We sent a package from Toronto Canada to Julianna, we hope she likes it. God bless Julianna and your whole family.

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  5. Bless you for allowing such a bright and kind-hearted girl to make the most important decision of her life. I pray for health and comfort for as long as she and your family can have it, and a peaceful pass to beautiful Heaven when the time comes.

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  6. We are from Albuquerque, New Mexico and have been following your story about Julianna and your family. I am a teacher of an 8th grade science class and each day my students ask me if there is a new post. We are amazed at Julianna’s strength and wisdom. We would like to send a package if we could have your address. Our thoughts are with you.
    Becky Anderson and students

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  7. Just talked to Gina and brought up to date. We think of you all often and miss our neighbors. Wish you continued strength and grace as you go through this journey.

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