“Exceptional. EXCEPTional. Exceptional!”

This was Julianna earlier this year, muttering to herself like she often did any time she was not directly engaged in conversation or play. It was an endearing but mostly incomprehensible habit.

Julianna’s hospice volunteer shared this memory with me. She observed her one morning saying the word “exceptional” over and over. J had found a new word, and she was exploring it. She probably liked the way it sounded, and I’m certain that she liked what it meant. (Another endearing habit: she frequently claimed that she didn’t know what a word meant – right after she had used it perfectly in a sentence. The girl had context.)


Julianna and her hospice volunteer. We call her our angel.


I love this image of her. She adored words; she was exceptional. Of course she should delight in the word “exceptional.” It just fits.

Communication through spoken word was vitally important to Julianna. As stupid CMT took hold, volume and enunciation diminished and it was hard to understand her words. This frustrated her, often to the point of tears.

In her last year, something changed. Maybe we got better at listening, or maybe she made peace with her voice. Calmly, she would repeat herself and enunciate each syllable until we got it.


Things got easier after she started using a microphone.


I like words too, and they’re not coming easily these days. I hope this passes, because Julianna’s story didn’t end with her death.

In the last post, I wrote that there are no new stories. This is stunningly and painfully true, but only in the literal sense.  I know that there is meaning and context yet to be discovered in the old stories, the ones show how a five-year-old girl taught us what it means to truly live.

Exceptional: that she was.



23 thoughts on “Exceptional

  1. Michelle, I think of you often and reading about how you are both grieving and celebrating Julianna never fails to bring tears to my eyes. What a bittersweet memory. Hugs from me, just a stranger with lots of love for Julianna and her beautiful family.

    Liked by 1 person

  2. Julianne will continue to create stories whether she is physically here or not. I suggest you read the book “The Power of the Powerless: A Brother’s Legacy of Love” by Christopher De Vinck. Her life – as short as it was – will influence your lives as long as you are alive. It will guide Alex and his interactions with his children – who will in turn influence the interactions with their children.

    Her life out lives her.

    Liked by 1 person

  3. Exceptional indeed. My family and I took a brief vacation to Washington DC this past weekend, and there were three different times I encountered something that made me think about (or remember) Julianna. The first was a purple-and-pink sunrise as we were packing the minivan. I hadn’t seen one that vibrant in quite sometime, and I immediately thought to myself that it was a perfect “Julianna sunrise.” Later, I came across an article in a magazine I was browsing and it had various “crafty” things people had either made or were selling. There was a crocheted mermaid’s tail in one picture that was meant as a blanket for young children. Of course, given J’s love of mermaids, I immediately thought of her and the similar mermaid’s tail she had. Then, on our return trip home, we stopped for lunch at a Cracker Barrel (a homestyle restaurant chain with an attached general store). Right at the front door when we walked in was a basket full of stuffed animals on display. The very top one was a large pink-and-purple unicorn that looked every bit as awkward as the one now made famous by all of you. As soon as I saw it, I immediately thought of Julianna and you guys lugging it with you on your CMT walk. So, oddly enough, even though there may not be any new stories for you to write about J, the old ones are still there. And, they’re still impacting the lives of everyone who reads them.

    Liked by 1 person

  4. Just wanted to let you know I think of Julianna often, but most recently I have been thinking of her more. Such a beautiful girl, that his given me so much realization. I was so happy to see your post and blog today. I scroll through your blog often and see the pictures of you hugging her and putting your head to hers..such a beautiful pictures.. but they are all beautiful. Sending you hugs and letting you know Julianna is living in our hearts always.

    Liked by 1 person

  5. Julianna is truly the meaning of exceptional!!! She really was! It never seems to fail how reading your blogs brings tears.

    Your exceptional in your writing and how you seem to keep julianna legacy alive. Your blogs are exceptionally written.

    Thank you Julianna for showing me how to truly live. You are missed from all over,everywhere, everyone…… Now that’s truly exceptional!!!!!💜💕💕❤️

    I wish I would of meant such an exceptional child, but your Mom does a fantastic job on her blogs because I feel very close to you.

    Thank you Michelle

    Liked by 1 person

  6. Dearest Michelle,

    I too was happy to see your post this morning. Please don’t stop!

    For the past 18 years I’ve loved my grandsons as deeply as I would imagine most grandparents love their grandchildren. For many of those years I lived in fear of losing them until I fully understood what “Let go and let God” meant. Your blog is a blessing for me in many ways, primarily the fact that we hurt as deeply as we love. Our God is a loving God, he doesn’t take just for the sake of taking. Juliana is loved, she’s safe, and our father has an awesome plan for her.

    Liked by 1 person

  7. Rediscovered stories, reframed stories, stories in new context, and even new stories..

    Julianne is alive in all of us.

    Love is a Super Power.

    Her love, your love, our 💘 love.

    Pass it around. Pass it along. Grow it, multiply it.


    Liked by 1 person

  8. Thanks for sharing Michelle. Princess J trully was ‘exceptional’. I often think of your beautiful little girl and know that as hard as it is for you guys she would be and is so proud of you. Stay strong Michelle your little angel is always by your side 💕🌸🌟😘xxx

    Liked by 1 person

  9. Exceptional… truly Julianna style. 💖 thank you for the post card!! We cherish being a part of the efforts to overpower stupid CMT. Thank you for continuing to write, and sharing.


  10. To me there are still new stories flowing out of the times I spent Julianna.

    It’s kind of like the Bible, there’s so little of what Jesus said that was recorded, yet over the years I’ve been impacted by many dramatically different sermons on the same verse.

    Julianna’s impact on my life creates many stories, which have been passed on to others. And just like God’s word, they are “profitable for teaching, for reproof, for correction, and for training in righteousness”, but most of all, for blessing.

    Liked by 1 person

  11. Your comments are so enjoyable so write to your hearts content….I’m sure I’m not the only one who tries to keep catching them….love to you all😊💓💓💓💓💓💓💓💓💓💓💓💓💓

    Liked by 1 person

  12. Hello,
    I wanted to tell you that I have been a silent but inspired observer of Juliana’s life and story since it first gained national attention. And I check this blog once a week or so as I am interested in your journey. Thank you for sharing. God give courage to you, to Steve, and Alex.
    Several weeks ago I was in Goodwill and there, sitting in a cart on top of other odds and ends, waiting to be placed on display, was Awkward Unicorn! Identical to hers. I wanted to laugh and cry at the same time. I felt a maternal impulse, as if I should take him home with me, not leave him there in that impersonal store, awaiting who knows what kind of fate. But my house is small and it wasn’t sensible. But i want you to know that for a moment, or two or three, I paused and thought of Juliana. And smiled. She is not forgotten.


    • Thank you for reading, and for sharing. A few others have told me about AwkUni sightings, and it always makes me smile. You are right – AwkUni is certainly not sensible 🙂 It’s part of his charm…


  13. mmm,
    There are many words that are fitting to properly describe Julianna and “Exceptional” would definitely
    be at the top of list not to mention “Amazing”, “Unique”, “Fascinating” and “Inspirational”. She remains
    as the photo on my cell phone screen saver, in my mind and in my prayers and heart for as long as
    I live.
    All the best & God Bless,
    13 November 2016


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 )

Facebook photo

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

Connecting to %s