Purple Grape

Julianna named everything.

Her ponies were Strawberry, Candy and Beach Ball. Members of her little raccoon family (they benefitted from alliteration) were Ellie, Edward, Eliza (pronounced (EE-liza) and Edwin.

 

Edwin — or Edward??

 

She loved some words just for the way they sounded. This is why she named her glow-in-the-dark ceiling stars “concubines.” (I think she learned that word from “Mulan,” and I’m pretty sure she didn’t know what it meant…because I know I would remember that conversation.)

The little girl who loved words and stories never wanted anyone (or anything) to feel left out, so even ostensibly utilitarian objects like staplers and bread boxes became characters in her extravagant and whimsical adventures. They made treks to see the Wizard, set traps to catch boys who kept messing up her room, and they helped her plan parties with “every color” balloons (but no gray, black or brown) and watermelon juice. If they were nice, they got invited to tea.

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Sometimes she had tea with boys who messed up her room.

This marker was called “Purple Grape”, and it went on adventures too.

 

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One of Julianna’s nurses told me about Purple Grape. One day, it  played a prominent role in one of Julianna’s stories. Months later, she insisted on finding it again, so they fished it out of a sea of Crayola markers. It was a happy reunion, and the adventure continued.

I found Purple Grape while cleaning out our craft cabinet, and felt the rush of joy/ hurt that is so familiar, but still powerfully and unexpectedly jarring. I found it!/She’s gone.

I tested Purple Grape, and felt the catch on paper that comes from a dried-out marker. Joy fled and there was only hurt. She’s not here, and it hurts so much.

And then, anger at the metaphor of a dried-up marker and the relationship with my only daughter. How stupidly cruel is this?

And I remember her hands. When she was diagnosed with CMT, it wasn’t in her hands yet. I remember the day I grabbed something out of her hand and it just slipped out. The doctor in me knew what it meant, and my heart sank.

I think of other hands, all the ones that helped. There were hundreds of them. They soothed and suctioned, bathed and brushed and they helped her play. They fashioned devices to keep pens in her hand, and when CMT took even that away, they held markers and paintbrushes in her hand so that she could create – because, don’t we all have to create?

 

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hairband + purple bandage = forehead scribble

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Those hands took care of Julianna’s hands. They kept her nails bright and her skin soft. (One of her respiratory therapists from the hospital even came to work early so that she could paint her nails. Love is a superpower.)

I miss her hands, and I miss her magic.

I am grateful for the many hands that sustained her, the ones that did her chores and shared in her magic, and the ones folded in prayer from afar.

She lived — no, she soared  — because of of them.

 

 

 

20 thoughts on “Purple Grape

  1. Michelle, I miss Julianna, too. In her honor, I will from now on and forever refer to purple as purple grape. Today I will craft something using purple grape, and feel happy/sad remembering your amazing daughter. ❤️❤️

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  2. Hi Julianna,
    Thought of you today as I was making a bunch of icing samples in multiple shades of purple.
    Remembering you with love, sweet child. xo

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  3. Such a beautiful post💜she will always inspire me….I think of her everyday when I look at my tank top hanging in my closet…thank you for reminding all of us to soar!

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  4. So much love in one special girl. She captured our hearts forever. I see little things everywhere that remind me of beautiful Julianna and your poignant writing, especially when I see those (awkward) unicorns, I think is what she called them 💖 I lost my dad at Christmas time after 10 years of debilitating parkinson’s that robbed him of everything except the knowing eyes. He is free now, just like your precious darling, and I can’t wait to see them 🙏

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  5. There is always room for joy- even when the heart hurts and joy sometimes feels like an impossibility. Yes, dear friend, that is so easy for others to say. I know.
    Wishes that you and your awesome family are doing okay. There is our past, which is behind us. There is the future, which is ahead of us. Sadly, all we have is the present moment- and i said “sadly” because the present moment is often clouded by the past or future. Our home is the present moment- yet it is so damn easy to live elsewhere- in the past or the future. Joy is possible in the present moment only.
    Stay strong, dear friend! Sending love to you and your family.

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  6. Something is impossible only when you make it impossible. Love is a superpower and imagination can be reality. So find a bit of magic- find a bit of joy in each day. If only a bit… that would certainly make J smile 🙂 p.s. Just because you can’t see someone, that does not mean that they are not there. Stay Strong.

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  7. How lucky was the world to have had Julianna in it. She touched millions with her strenght and even though I didn’t meet her, she taught me many lessons. Your family is always in my prayers.

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  8. I stumbled across a news report of sweet, beautiful Julianna on YouTube ❤ I was shocked to read that she had CMT. I also have cmt ❤ and while my cmt has been confirmed, I have type 1a, my progression has been very accelerated. Julianne's story has touched me in a way I didnt expect. I was just recently diagnosed with diaphragmatic paralysis on the right side, and will need a ventilator to help me breath. Seeing this wonderful little soul take on CMT with Grace has really touched my heart ❤

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  9. I was reading your post and thinking about the joy Princess Julianna brought into everyone’s heart that knew her; while you were just talking about her in your blog. Then, I got to the picture of her (the 4th picture), and remembered those beautiful BRIGHT eyes, then it hit me, the saying, “love IS A SUPER POWER”! I kind of got a revelation for a brief second way deep down where it counts in your spirit! That saying is so true of Julianna she had so much love and compassion for people, and for everything around her. The little girl who didn’t even want to step on flowers! She appreciated them so much! You’ll never be forgotten Princess Julianna, you’re in our hearts everyday!

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