Julianna teaches us to not take things so seriously. It’s simple yet profound. And a lot of fun! Here are some examples.
Our daughter has a beautiful inside, but she’s also concerned about the outside. She loves fashion. In her world, fancy always trumps plain: she appreciates color, texture, embellishment and sparkle.
Note: She does give passes. I am allowed to wear my 10-year-old gray t-shirt if I’m not leaving the house. Steve and Alex are exempt from her sartorial demands:
J: I like boys the way they are. They’re handsome.
Every morning, I stop by Julianna’s room before I go to work for a wardrobe check.
3 Nov 2015
I walk into Julianna’s room.
J: I approve!
M: Thank you, Julianna.
J: Your scarf makes your eyes sparkle!
M: Julianna, you say the nicest things. You make people feel good.
J: I love your eyes. They are beautiful
M: Thank you, J – I don’t think they are nearly as beautiful as yours, though
J: They are like mine. They’re brown.
M: Yes, they’re similar – you’re my daughter, after all.
We look into each others eyes for a while. So much love.
J: Ok, this is getting weird.
As previously disclosed, Julianna is not patient. She likes to PLAY, and everything else (phones, treatments, conversation about logistics) is not worth her time. In this photo, J was having a “picnic”. Julianna has never been on an actual picnic, but she loves to pretend. Standard picnic fare for J includes marshmallows, strawberries and chocolate pudding and (sometimes) green beans. It’s cute, and we wanted to take a picture.
J: Dad, can you cross my arms?
Steve: Ok, why?
J: I am waiting for you to be done.
This is what happens when you ask J a leading question.
Feb 2015 — I am tucking J in for the night.
M: Do you want to say a prayer to God?
J: I love you, God
M: That’s nice.
J: He is nice to me.
M: How?
J: He gives good things with bad things.
M: Have you had bad things?
J: Yes.
M: What?
J: Poison.
M: What? You never had poison!
J: But Snow White did…
24 Jan 2015 – conversation in the morning
J: If I was a warrior, I’d get rid of bad guys.
M: You’re not a warrior?
J: No, I’m just a little girl.
M: I think you’re a warrior. You’re brave and have fought a lot of things.
J: rolls her eyes. Oh my gosh!
In the midst of everything you guys are going through, just wanted you to know that my prayers are with Julianna and with your family. She is so absolutely adorable, and I look forward to seeing Alex on “Ninja Warrier” some day. I could not help but chuckle when I saw him climbing up the side of your house when you had Julianna outside for Halloween :).
I have learned so much about life, what to value, humor, and the Lord’s Spirit, through Julianna and your posts. She is a gem, and you guys are amazing parents.
Sending love and hugs,
Laurie Smith
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Hey J,
Just wanted to tell you how amazing and strong you are. I am 24 yrs old and have never known anyone that can always find the poistive things even when they are going thru difficult times in life. Your family and you remind me everyday to stay positive and keep my faith in God, for this i can not thank you enough. Just know that you and your family are always in my prayers!
Thinking of you always from Kansas! Brittany
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Hi to a wonderful family across the seas…
Just know, that you are being prayed for and still believing for a miracle for J and your family…God knows the end from the beginning and may He supernaturally carry you all through this journey, and I pray and continue to speak forth a miracle of healing over Julianna, head to foot….
I would be so grateful to God to see her fulfill His plan and purpose for her life as she continues to grow older, even as He is using her even through this difficult journey to encourage and bring a smile and joy to others..Be blessed!!!
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She sounds like my kinda girl, always able to smile through it all. Be fabulous always, J!
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Haha love this. What a sweet little Angel. My favorite part was when she wanted her arms crossed… I’m thinking of you guys. All of you. You are all so brave.
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