A few nights ago, I sat with Julianna on my lap.
J: Mom, I think I know more about life than you.
M: Oh really?
J: shakes her head. No, I’m just kidding.
I pressed her for details, and this is what she shared.
- “You have to be born for your mommy to see you.”
- “They let you sleep a lot. I know that really well.”
- “Cinnamon: if you sniff it, you will sneeze.”
Surely there’s more? There is, but she thinks of it in “bits”. She has promised to divulge her discoveries as they come.
One thing I’ve wondered about – and asked on several occasions – is how she stays so happy.
Perpetual brightness, like clichés, can be annoying. After all, clouds don’t have a lining, (silver or otherwise) and not everything has reason for happening. Our Julianna is almost always happy, but here is nothing false nor cloying about her. She’s a five-year-old who knows suffering yet is utterly unfamiliar with bitterness or self-pity. I don’t think she’s choosing joy or happiness – she just is.
And when I ask her, the answer is always the same. Why are you so happy all the time? She shrugs and says “God made me that way.”
And I believe it. I believe that her capacity for joy that is independent of circumstance is a gift from God. It’s humbling, and thankfully, it’s infectious.
These are the things that brought us joy this week:
A moment off BiPAP, that smile, and her cute little nose. I’m used to and grateful for the BiPAP, but I miss this.
Sunrise, sunset. Julianna slept through the sunrise (with her favorite colors!) but caught the sunset.
And, as always, the funny.
M: What is this picture from?
J: Mom, it’s when I went to Alex’s school…
I look at again, and she’s right. About ten months ago, we took Julianna to Alex’s school play. She’s been out of the house just a few times this last year, so of course she remembers. But it’s still remarkable, how quickly her mind works…
M: You’re right! How do you remember things so well?
J: Mom, when you get older, you start to forget things….
M: Are you saying that I’m getting old and forgetful?
J shrugs.
M: So at what age do people start forgetting things?
J: Twelve.
Julianna is playing with her grocery store. Its shelves are lined with about a hundred tiny little items that require slender fingers and a good deal of manual dexterity. Steve doesn’t have the former, and keeps knocking things off the shelves. J is uneasy.
Steve picks up one of the items – a cheese wheel.
J: Can you put that down please? It’s expensive…
A few minutes later, she’s had enough. Steve comes to the kitchen and tells me that Julianna is requesting my presence. She knows my fingers are skinnier.
And lastly, J had a visit from some colleagues.
She loved it, of course. I wonder if any other Anna has ever been asked to read Calvin and Hobbes? Afterwards:
M: So I guess princesses are real, huh?
J: nods. Did you not believe me before?
M: I guess I didn’t…
J: pauses — But I did see some brown hair. (This Elsa is really a brunette…)
M: You did? (laughing)
J: quickly — But it’s OK!!
Julianna Yuri 
I love seeing Julianna’s smiling face each time you post. Ive gone back and read some of your earlier thoughts; have you ever posted a video? I have a voice in my head I hear when you share your conversations. She clearly is a natural story teller 🙂
Wishing you all an abundance of daily joys.
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Such big beautiful eyes
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HEY. What twelve. I resent that !? 😦 But it reminds me of my kid who said you have to stop calling your mother “Mummy” & “you must call her ‘Mom’ ” when you reach twenty …
Also – J & I obviously have different ways of exploring life because I Do Not sniff cinnamon. I don’t think I’ve ever deliberately sniffed it before … but now, as much as I don’t really think I want to make myself sneeze .. I’m quite curious to try it out now. :p Cinnamon smells good when it bakes though! 🙂 🙂
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❤️❤️
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I love starting the day with a Julianna story. Thanks for inviting us on another sweet and hilarious adventure!
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Reading this was a wonderful start to the day. Super hugs and prayers to y’all!
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Beautiful girl! I agree with the others, reading this is a great start to the day!!
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For what it’s worth, I think J knows a lot more about life than pretty much all of us. Her happiness is most definitely a gift from God. It balances out the burden she bears, and I imagine it helps everyone around her deal with it better, too. But, in truth, her life and her story (as you share it with us) also helps ease the burdens of others. Every single day is a little bit brighter because of her stories, wit, charm, and child-like faith. 🙂
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Love reading the updates. I hope Julianna and the family are doing well. She looks like she’s getting better which is a true blessing. I pray a lot for Julianna and believe in miracles. Happy birthday to Steve. Sending our prayers and love from Pedro,Sujin, and Jessica.
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You are all a delight….thx so much! Love and prayers!
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As always, delighted to hear about Princess J, her take on the world and see more photos of her.
Extremely pleased she is almost always happy and it shows. Still didn’t receive the things I ordered from
Korea for Julianna and Alex but will send them as soon as I receive them.
Looking forward to a happy, healthy and comfortable March for the entire Snow family!
All the best & God Bless,
Valentino
Monday, February29, 2016
12:45pm
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I am incredibly lucky to call Julianna my new friend. My hours spent playing with her and caring for her are huge gifts that I will never (could never!), ever forget. Many thanks to her (and to Steve & Michelle) for being patient with me.
As a nurse who’s been — many times — “at the child’s level” when they’re losing battles with terminal illness, I (like Cecilia, above) am disappointed in Dr. Caplan’s notions; I respectfully yet wholeheartedly disgaree with him. I hope you guys don’t let such opinions weigh on you or make you doubtful about the depth of knowledge/expertise that you possess, in regards to what your family needs and doesn’t need! ❤
I support all four of you and I think each of you is amazing. Michelle, your blog is wonderful and PERFECT!
I hope this wasn't posted twice — computer on the fritz!! :p
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Thank YOU – we are indebted to the the many who have cared for J as if their own. She loves playing with you as well.
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