UPDATE:
Julianna is doing well. No more throwing up, and we’re working on increasing her feeds. She’s been busy playing.
J on a particularly busy day. She calls this picture “10,000 projects.”
Happy (CMT) feet
And now the post…
Sometimes I toil over blog posts for days. Sometimes, I sit back and just quote Julianna.
She has the gift of gab, our Julianna. Every day, she says something startling — startling/funny, startling/profound, startling/imaginative. It’s a window into a delightful mind.
Here are some examples.
It’s bedtime. Julianna yawns.
J: What’s a yawn?
M I’m thinking…why DO we yawn? Where is the yawn center in the brain? Did I learn this in med school?
J: Is it a silent burp?
Dressing Julianna is challenging. She can’t tolerate a lot of time off BiPAP, so everything has to be laid out and ready. The voluminous princesses dresses take some extra effort, but J is willing to make that sacrifice — on some days.
One day, J picked out a princess dress. We struggled a bit to get it on
J: These are my work clothes.
These days, Julianna likes to alternate princess days with pajama days. This is J’s idea of princess-casual.
I ask Julianna to smile for a picture.
J: What size eyes do you want? Small? Medium? Big?
J: Medium is perfect.
And lastly, her fantastic imagination. Her stories are spontaneous and vivid. They often send me flying to my laptop so that I can record the details.
Tonight, our five-year-old came up with a plan to eradicate polio.
J: Look at that poor little bear. He’s hungry. We need to feed him.
M: OK, what do we feed him?
J: Acorns.
M: OK….here’s some acorns I find a fake pearl — it’s round and can pass for an acorn. I put it next to the bear.J: That’s a silver acorn. It’s marshmallow flavored.
M: What other flavors are there?
J: Brown – it’s chocolate. And pink.
M: Pink is strawberry, right? I’ve done this before, I know the drill.
J: And orange for orange. And – she pauses. Did you know there are some bad flavors? She looks serious.
M: Like what?
J: Polio.
M: What?? How do you even know what polio is?
J: Grandma told me.
M: OK, what’s polio?
J: It makes your muscles weak and makes it hard to breathe.
M: And there are polio acorns?
J: Yes. They’re red.
M: OK…
J: You can’t eat them. You’ll get polio
M: Right.
J: The polio acorns are red because they are trying to trick people. They want you to think they are raspberry.
M: Oh, that’s no good.
J: Raspberry acorns are red and bumpy. Polio acorns are red and smooth. We have to get rid of them.
M: How?
J: We have to go to the wizard and ask for a spell. That’s the only way
M: Ok, lets do that. What would you tell the wizard?
J: I would tell him “Get rid of the polio acorn.” OK , hold my hand so you don’t touch the polio acorns. I take her hand and swing it, pretending we are walking.
J: So we walk towards the wizard. We go through the door. Shhh….we have to be real quiet here. We’re here!
M: Now what?
J: So — can you tell him?
M: Wizard, will you please destroy all the polio acorns so no one gets polio?
J: He says “Here’s a potion”
M: Oh great, now what do we do?
J: We sprinkle it on the polio tree. Here’s a flying spell so you can sprinkle it. You’ll be above it so you won’t touch it
M: Oh, thank you.
J: Put gloves on. The potion is hot
M: OK, I have gloves on
J: Ok so – let’s go.
I take J’s hand again and pretend to walk
J: You’re flying above it. Now sprinkle it
M: I’m sprinkling…
J: Ok, so then the polio disappears
M: No more polio – we got rid of polio.
J: Yeah.
M: That’s awesome.
J: There’s no polio. Now there’s raspberry acorns on that tree.
M: I love it. Everyone loves raspberries. Congratulations!
J: Yeah – WE DID IT!!
The little bear that needed acorns is in the clear container. The pearl in J’s hand is the marshmallow acorn. The ponies are in the picture b/c J insisted.
Julianna Yuri 
Love your amazing girl. So glad that she is feeling better. I’m keeping her and all of you in my prayers.
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I love these stories, blessings to you! It would be great to put Julianna’s stories to print!
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Oh my gosh I felt like I went to Enid Blyton land for five minutes. Hehe good job J! (although – exactly. What !?!! How do you even know what’s polio, J? I would have thought bad flavours are like, rotten eggs or icky meds .. but Polio – that’s redefining bad flavours altogether on a different new level haha)
Ok J & Mish, me wants in on updates on the book of Julianna-isms when things fall in place on that!! (not the first time I am saying this but a reminder never hurts :p)
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❤️❤️
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I am so glad Julianna is more comfortable. She deserves a raise for those 10,000 projects! And blessings to you and Steve and Alex; prayers for you to stay strong. Love the acorn story.
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Julianna makes my day. I love her vivid imagination that takes her everywhere and wants to help others. I am so happy when I see a new blog post unless she’s sick 😦 and then I pray for her and you.
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Thank you for the updates! So glad to hear she is comfortable again. My daughters have made something for Julianna and Alex and I will placing it in the mail today.
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My son had glioblastoma at 15 yrs of age That was 16 years ago. He suffered a stroke after the biopsy and was half side paralyzed. He loved basketball and was very good at it. After a few months of losing physical abilities , I asked him ” what if your miracle is that you stay as you are “. He pointed up , meaning he’d rather go to Heaven. Brain cancer ( terminal ) just keeps taking judgement, reason etc away so that was the only conversation we had of that type.
He passed 7 months after diagnosis. He was home with some hospice care the last 2 months. We hydrated him but did not do a feeding tube . The sister of one of his friend’s was diagnosed with leukemia 4 days after our son . She painfully battled sickness and treatment . When they told her, there was nothing more to be done medically and her parents asked her how she felt about that, she told her mother” Mom, I just don’t want to be sick anymore”. She also said. ” oh, maybe why that is why when I thought of the future, it was like looking at a blank page-“- all her life! She passed at 11 yrs of age .
Please believe you will be guided by God in whatever choices you make. I support you in your decision. No one outside the arena understands.
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Thank you so much for writing. I am sorry for your loss – GBM’s are horrible, and seem only to happen to the most wonderful people and families. Thank you for sharing part of his story. I wish that children didn’t need to think about these things, but it sounds like you did everything you could to make his time here comfortable.
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Hello Michelle, Steve, Alex & Julianna,
I have enjoyed each and every communication you have written but this one was my favorite!
So pleased to hear that Princess J overcame the problem feeding. She really looks comfort-
able, busy and happy. I absolutely loved all the photos as well especially the one with the
Princess Pajamas and matching Princess Tiara.
All the best to my favorite family,
Valentino
Friday, February 5, 2016
1:20pm
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Grandma here. The subject of polio came up with Julianna one day recently when I was describing a friend/former boss (who has now passed away after living a very full life) who had polio as a young woman. She was left with paraplegia and some facial paralysis. Of course, Princess J had to know all about polio. I did assure her that we now have immunizations that protect us from getting polio, but polio acorns sound like so much more fun.
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Great to see Julianna is doing well, and having fun. We will keep Julianna in our prayers tomorrow at church. Sending love and prayer from Pedro, Sujin, and Jessica.
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