I go treasure hunting these days.
It’s mostly on my laptop. I can spend hours bringing up old files and photos. They say that a messy desk is a sign of creativity. I agree, and extend that premise to my virtual desktop. I search and search, because I know there is more Julianna in there, more conversations, pictures, and stories. I’ve found some things, including entire blog posts I never published. They didn’t feel right before, but they make sense now. (I’ll share in due time.)
They are all treasures, these pictures and transcripts. They’re wonderful, amazing (in the true sense) and heartbreaking : truly bittersweet. Our whole journey with Julianna has been that way.
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This weekend, Steve and I had our ten year wedding anniversary. We almost never make plans for these things. Too much expectation tends to disappoint, and we’ve also been a bit occupied. Now, we have more freedom. Unwanted freedom, but freedom nonetheless.
We decided to take an overnight trip to Oregon wine country. Most of me didn’t feel like doing it, but sometimes you override feelings. I’m so glad we did. She was everywhere.
There have been lots of things lately that seem strange, or by chance. Coincidences. And they keep happening.
On Julianna’s last good Sunday, she picked me a little sprig of lavender.
I kept it in a shot glass (I know, I know – I can hear J’s admonishment too) and have been searching for the perfect little bud vase. I’ve been afraid that it would dry up and fall apart.
On our way back, we “happened” to pass by a lavender festival and I found this:
Like she wanted, I’m keeping it in our room, and I will think of her always.
We also stopped at a favorite Thai restaurant. This was my rice:
We’ve been there many times, and the rice has never come out like that.
When we got up to leave, I noticed this picture over our table:
Pink! J especially liked it when there was a set: “mommy and baby.”
There was more.
- It’s the height of travel season, and we only started planning about ten days ago. Everything was booked. Just as I resigned myself to trying again next year, I “happened” to find a beautiful B&B with an opening.
- Steve met the innkeeper first and told me that Julianna would like her glasses and shirt – can you guess why? She wore another pink shirt the next morning. I asked her if pink was her favorite color, and she looked puzzled. It’s not, and it wasn’t intentional. It just “happened.”
- We stopped by a coffee shop, and there was a little table of sparkly jewelry. I browsed while Steve ordered coffee. After a few minutes, a kind woman approached me and introduced herself as “the jewelry lady.” She has a day job, but her passion is gems. She likes to hunt for bargains and pass them along. She wants to put sparkle in everyone’s life. Sound familiar?
There’s even more, but I’m stopping here because the post is getting long. Thanks for continuing to read, and for your encouragement.
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One more thing: I’m still not watching or reading the news, but I know there’s much pain and strife and darkness. The great German word Weltschmerz (“world pain” – feeling the world’s heaviness) comes to mind.
I have felt that sense of hopelessness before. Maybe that’s why I’ve unplugged from things I can’t change. It’s too complicated, too big, too much.
And then I think of a little girl who could barely leave her room. She needed a microphone to be heard, and she was more helpless than a newborn baby. She couldn’t do anything for herself…but she loved. In her tiny little universe, she loved, extravagantly and without limits. Her love changed lives.
Big changes can start with small acts, from people who have no outward signs of power.
I can’t wait to see what she can do now.
Love is a superpower. It makes bad guys good. — Julianna Snow, age 5
Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. – Philippians 4:8
P.S Two more treasures.
- J’s first daycare provider sent me these pictures.
- A snippet of a conversation from Julie, her hospice volunteer. We call her “our angel.”
J&J. Playing, with pretty things.
J&J are playing. Out of the blue:
Julianna: Do you have angels? I do.
Julie: Yes, I think I do.
Julianna: Good. Let’s play!
Julianna Yuri 
Your writing is elegant. Your thoughts are poetic. I’m so sorry this is all borne in the worst possible pain. Know that many are holding you in thought and prayer 💕❤️💕
(I am 53 and have CMT)
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Thank you for sharing, i love reading your posts.
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You truly write so beautiful and always await your next post. I enjoy seeing new pics of Julianna. I love elephants as well none less pink ones. I hope you don’t mind I shared that pic on my IG in memory of Julianna.
Tears run down my face as I read your blogs, I cant imagine the aches you are going through in this difficult time. Please know Julianna is always in my heart and I think of her often.
Thank you again for sharing her to us. Julianna was a blessing, a special child , loved to the fullest, cared so much for others and inanimate things.
She has taught me a lot about life.
You and your family are always in my prayers!🙏❤️
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Amazing was and is little Julianna. Can’t wait to meet her.
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I think Julianna will always be with you guys, no matter what. There essentially is no hopelessness where it concerns Julianna, rather just hopeFULness for every moment that reminds you of her until you see her again. If love is a superpower, it stands to reason that hers can continue to impact you even now. Prayers and comfort for all of you.
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Omgosh… She is with you! Sending you all kinds of signs. Amazing! Puts a big smile on my face and gives a surreal peace. What a beautiful feeling. Keep sending signs Julianna, so your Mommy can share with us…and keep writing Michelle, this is something special.
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I love reading your posts! While reading the first part, “There’s treasure everywhere!” I kept feeling as though Julianna were someone letting you know she is happy and loves you. As though she were trying to send your signs through the things you guys were experiencing.
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Aww.
If you’re looking for more ‘treasures’ (I don’t really have one, I mean I do but it was kind of yours first – from you & J to me, first), you can post the letter I wrote J, & the story she wanted to write about a stable for my parrot – if you still have it/want 🙂 No pressure but since you’re scouting for gems, I thought that might be an idea!
& if you need words, you can say ‘Julianna received a story about a parrot one day, and she wanted to build him a stable.’ (Because M says ‘you can’t just put pictures’, but J seems to think that you don’t really need too many words to put a picture .. which is true I suppose. Haha.)
Then you/Alex could even write the parrot-in-a-stable story, if you want. 😉 or the Christmas poem works too. I love the Christmas poem, even if/or maybe because, I didn’t write it haha.
(Just block out my address, please. Haha.)
Meantime … some love headed your way soon. (really! I keep saying this randomly cos I don’t want to spoil the surprise and .. as far as I know it’s out of my control, for now haha.) If I’m not wrong it goes out within the next 48 hours and should reach you before the end of the month. Hahahaha we’ll see 😉
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Thank you so much for sharing Michelle. It doesn’t matter where you are or what you are doing, Princess J will be with you all of the time and show she is there in many different ways…. She will never leave you💞 This week I am going to buy some lavender for the garden in my UK home as a memory for Julianna X
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Even a scientific mind knows that there is so much beyond our grasp. When you start seeing “signs”, your mind is in tune with something uncommon. Our eyes retain very little of what is out there. Your focus is on a special, narrow path. I hope that every sign you see comforts you and your family. I hope that you and your family finds all the answers about J that you seek. I know how it feels to see signs. Probably the most unusual sign i saw was a human skeleton! I gave an AF friend cpr, he didn’t make it. So like 2 days later, i had to take a test for college. The professor put me in a room to do the makeup test. About 2 feet away from the desk where i was taking the test, there was a full skeleton (biology class) I was like…wtf?? Well, it was hard with the distraction, but i completed the test. The professor graded it, and told me good job, i got an a, and he did not know how i did it. Well, the professor is old school, he was a marine in vietnam. So- well… let that serve as an example that the signs you see may be kind, and they may be harsh. Either way…it will likely help you in the long run. One day at a time. And if you look too hard for the signs they tend to fade a bit…just let them come as they will. Personally, i have the utmost respect for you and your family, because i couldn’t even read your blog entry without tears. I respect you and your family so much, so much!
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Thanks Michelle, your words are beautiful. Know that I care!
Marianne
Sent from my iPhone
>
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the ad’s are vile, but youtube puts them there, not me. So anyways, a work in progress, and it will be constantly changed. for now, song is for you and hubby, under song is for Son. It works best on a pc, mobile limits it. A large screen and a mouse is best. Tell him to focus on it, move the mouse and learn how to control it. You, Steve, and Alex are NOT alone. Just because you can not see her, it does not mean she is not there. julianna.cc
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Oah, and sorry, i forgot…when he focuses on it, and moves the mouse to control it, tell him to try and block everything out, the only thing that exists is what he makes the screen do. It’s kind of like Zazen or T.M, practiced for centuries. modern science shows benefit of alpha waves and more.
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There is one way to find more treasure, more pics. Videos of Julianna can be extracted to individual photos, One software program for windows is “video to picture” , it will make many photos from one video. Frame by frame, it captures 35 or more frames per seckond, You can see one blink eyes in slow motion this way. It captures some unusual expressions on a face, so do not be bothered by that. 35 or so frames per sec captures a lot. There are programs and websites to download video from youtube, although doing so is in violation of youtube terms of service. Nevertheless, i will use youtube videos to extract pics of J. So, there is new treasures to be found 🙂 Hope this helps.
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First, there are no coincidences. God speaks to us in many ways. Second, your writing is phenomenal. I hold on to every word. Thank you for sharing and continually teaching me to pay close attention to all details of my kids journey through life. Third, the Calvin and Hobbes background is awesome. Love and Prayers.
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As always beautifully done, j is all around you pay attention to your dreams she probably trying to reach you there. She is still an amazing little Princess love her so much. Thank you!
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She is sending beautiful signs… wouldn’t expect any less of such a creative princess.
💓
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Michelle, I wanted to share with you that the other day I had a dream about Julianna. I saw her from afar, but recognized her. She was dressed in red pants and a pink Hello Kitty shirt, with white sneakers, and she was laughing and running. Thought you’d like that image. Lots of love.
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Thank you. Each of your posts is a gift.
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Oh Michelle, This is what I have been praying for you, that you would experience things like this. As usual, your words are healing and inspirational.
I don’t know if you have seen the version of Anna and the King (with Jodie Foster) but your experiences remind of parts of that movie.
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Dear Michelle,
I want to thank you for sharing Julianna’s story as well as the story of your family as each of you deal with the devastation of CMT and the loss of Julianna to this vicious disease. Thank you for the gift of your writing about and sharing this journey. You have caused me to know what it is to be taken to my knees by the grace and joyfulness of one child and her family – to be challenged to do better in my own life simply by witnessing the way each of you loves. I cannot imagine your pain and I am learning so much about love – God’s love, family love, love for our common humanity, from your sharing of it.
I am certain that Julianna will continue to be one of my greatest teachers. In particular, through her vulnerability, honesty and endless capacity for wonder and joy (I love all this stuff) – and through her superpower -LOVE. Reading your posts, it seems that, for some time, she had been banking memories with each of you that she wanted to remind you of her love when she was no longer here to speak it. She knew how to make a moment. Panic, no, just another adventure. Thank you – my prayers and gratitude are with you all.
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Happy belated Anniversary! Thinking of you and your family, love
Dominique
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Lovely that u 2 could get away….I got a little vale from walmart that can accommodate the little dandelions that the grandchildren bring in with great expectations of my adoration 😊
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Vase …opps
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God is GREAT and I truly believe that he has placed you in every situation you have encountered recently to let you know J is right there with you always. If the world had more beautiful souls like J had, and the world had more parents like you two, that teach their children love, happiness and to let their imagines SOAR, the world would be such a beautiful place. ~ With love always…….Tammy
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I’m smiling through my tears, thank you for sharing. I do not believe these were coincidences, I believe J was letting you know she is still with you, hoping to ease your heartache.
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Alex is adorable the way he was with Julianna hope he is doing good.
He kept her very happy she always has a smile on her face when he was around her. Sending a big hug to you Alex. 😄
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