The day after Julianna died, we got rid of all her medical equipment. We were indebted to the machines (they kept her alive, after all), but when they were no longer needed, I wanted them gone. Stupid machines; stupid disease. I hated it all.
So the machines went away, and our house went quiet. I no longer heard the whirring of Julianna’s feeding pump (it ran thirteen hours a day) or the constant whoosh of her BiPAP.
Of course, the sound I missed most was Julianna’s voice, her constant observations and ridiculous wit.
Let me tell you something…
Ooh, what’s that?
Let’s play!
And so much more…
Last summer, the silence of our house was overwhelming. It shouted at me, cruelly: JULIANNA IS GONE. SHE IS REALLY GONE.
One year later, it feels different. It’s still too quiet, but it no longer taunts me. We gave her the most beautiful life that we could. She was surrounded by love. She is free. There is peace in this kind of silence.
I don’t think that time heals all wounds, not when the wound goes straight through the heart. But the pain is not quite so exquisite. It’s less likely to maim. Is this what one year does?
And then, I see it. It’s pure gold, a forgotten photo:
Sept 2013
My heart is filled with joy, and then it is crushed.
This is her pre-K class photo, her only class photo.
She was able to sit up – by herself. This was before the scoliosis destroyed her spine.
Her fingers aren’t that curled. Why didn’t we paint them that day?
Her jumper was from Costco. It seemed like a good back-to-school outfit. I often had a hard time getting out of Costco without getting her another frilly skirt or princess dress. Her eyes lit up and she always said “I love it!” I still can’t go into that section. I miss that.
Her pink tennis shoes. Finding shoes that fit over her orthotics was work. They had to be big but light, and not completely ugly. I usually bought ten pairs of shoes and was lucky if one worked. When I found these, I bought the next size up –but she never got to use them. A few months after this picture was taken, her CMT took over, and we started our year from hell. She lost the ability to stand, then sit.
Her hair is in her signature bob. Could it be any cuter?
And that face, that smile, those eyes. Her mischievous, knowing, beautiful eyes. What was she thinking? What would she have become? What would she be doing now?
There are wounds that cannot be healed on this side of heaven. This will not go away.
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This weekend, we attended a bereavement retreat. The theme was the “Wild West of Grief.” Each family made a craft project that depicted their grief journey.
This was ours:
It was a bit too much, but I think that she would have loved it.
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This is your last chance to get the 2017 “Love is a Superpower” t-shirt. All proceeds will go to CMTA. Orders need to be in by 31 July 2017. Adult and children’s sizes are available.
Click here:
Julianna Yuri 
What a sweet, beautiful smile! Julianna would approve of the sculpture. We miss her too– we rejoice knowing that she is dancing and singing everyday in heaven!
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Yep, you’re definitely a writer. Not that you need me to tell you that, but … I’m telling you that.
Too much “real world” leapt back into my little family’s life after this weekend’s retreat, making it too easy to quickly lose the firmer footing I had found. Thanks for jolting me back to what really matters with this post.
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Beautiful Julianna! 💗💖🙏 We send much love to your family, and super hugs to Alex! 🙌😊
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I placed an order for a t-shirt today. Thanks for the reminder that “Life is an Adventure.” And I’m always happy to support your family’s efforts to fight CMT in Julianna’s memory. Best wishes to all of you.
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God Bless you Michelle.
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What a lovely picture! Julianna is beautiful. I have come to the realization that time does not ease the pain, our hearts just realize we cannot continue to break at every memory. We have to smile-even through tears. I would go through all of the hurt again to have had my love, and I know that you feel the same about Julianna. My heart and prayers are with you all.
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If you can keep something back….something like not going in that section of the store, then there is always something. In time you will go to that section, perhaps soon and perhaps later. But that section and other things to hold back are not the best for your spirit. (spiritual health) J everywhere now. That section and beyond.
And yes Michelle, time has a way of helping one come to terms with loss. You will never be okay with it, but you will somewhat come to terms with it in your own way, on your own place. Nothing you feel or do is wrong. It is a process you are going through, how you feel is exactly how you should feel at this moment.
Oah and sometime i have to email you or drop a line on your Instagram if you are still on there (i havent checked in months). It is a simple and humble matter, a story that should be told.
As always is was profound to read your words, as you are literally my favorite writer, your technical style is the best of any writer. And the content, of course, matters. You and Steve and Alex and Alex ‘s grandmother (forgive me i think that is how you described her) have been through a lot and should give yourselves some credit. You have been through so much. Keep going!
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Correction, i meant J is everywhere now. Sorry, forgot the is.
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Oah the email is in the FAQ. 🙂
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Beautiful and precious.
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So true, some things just don’t heal on this side, period, best you can expect is they are tempered. We learn to live with so many things but when it comes to this level, the challenge is overwhelming. You gave her everything you could and well beyond and actually you are still giving to her and us and letting her give to us through you, that is one of the weapons to help temper it all. It makes your heart swell with equal amounts of ugly nasty grief and wonderful Julianna beauty at the same time, that is so overwhelming and difficult, but it has goodness just the same, hang on to that.
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