Hugs and Stink Eye: Julianna Live

November 21, 2015 / Michelle Moon / 6 Comments

When writer’s block hits, it’s time for live action! These are some of our favorite Julianna videos.

For a while, Julianna was able to walk short distances in a walker. This was taken on one of the first days she used the walker. She is about 18 months old — and confident! (Note: Sammy was my very first baby. She is in doggie heaven now.)

A child’s first steps are always special, no matter how they come. She hasn’t been able to use a walker for almost two years, and I couldn’t watch this clip for a while. Today, I’m just grateful that she was able to walk for a time. Some day, she will do much more.

I’m including this one because it just cracks us up. We did teach her to say “praise the Lord.” But the raising of the hands and the exuberance is all Julianna.

Alex is a fantastic big brother. But he doesn’t always want to hug his sister.

Julianna has a flair for drama (which is a nice way for saying she is dramatic.) I have always thought that she could be an actress. Last summer, she showed her range. My favorite is “stink eye.”

“I’m Bossy but a Little Bit Polite”

August 15, 2015August 17, 2015 / Michelle Moon / Leave a comment

Summer 2013. Grandpa made this for J because it just fits. Says J: “I’m bossy, but a little bit polite.”

I hope that we’ve established by now that Julianna is wise beyond her years. Her remarkable words about heaven are what started my quest to share her with the world. She teaches me to embrace joy instead of giving into fear.

J’s wisdom is not limited to the profound. This girl knows that there is a certain way to do things, and she is not afraid to deliver her opinions. If Glamour ever needs a guest columnist to instruct (tough love style) and encourage, Julianna is their girl. This is what it would look like:

Be direct but kind

Julianna tells us she loves us at least ten times per day. Sometimes it’s tactical.

Background: Moving J from sitting to laying down is complicated – there are tubes and lines to watch. It’s one of the main things that a new caregiver has to learn.

June 2015. Moving Julianna takes practice. (Photo by Aubrie LeGault, Capturing Grace Photography)

March 2015

Today I moved J from the chair to the couch. It was awkward.

J: Are you training?

Later that night, I ask her about her comment. She avoids eye contact and says:

J: Mom, I love you!

Take care of your face

April 2015

I try to wipe Julianna’s face with a baby wipe. She refuses.

J: They’re for bums. And trash cans.

June 2015. Washcloths, not baby wipes. (Photo by Aubrie LeGault, Capturing Grace Photography)

And Don’t Forget your Neck

Dec 2015. Bedtime with J. I’m bent over her at an awkward angle.

J: Your neck is wrinkled!

M: I can’t help it. I’m old.

J: You have to help it. Help it!

M: How?

J: Don’t bend your neck.

Sometimes cute requires sacrifice

Everyone in our house has a big cranium.

(High school flashback: It’s a few weeks before graduation, and I’m being fitted for my cap and gown, and it’s not fun. The principal tries to make me feel better. “Some football player” has a cap size bigger than mine.)

There’s no way around it: the headband and tiara industries are sizeist. Julianna refuses to be excluded.

Last week, I picked up a cute headband for J.

J: I love it!

M: You won’t be able to wear it for very long, Julianna. It’s tight.

J: C’mon mom. I’m tough!

Aug 2015.

Accessorize!

Dec 2014. Channeling Rudolph, not Bozo.

Oct 2014. Numchucks elevate the dreaded hospital gown.

July 2015. Who said BiPAP has to be boring?

Speak softly and carry a fabulous photo

Jan 2015.

The bejeweled photo within this photo was one of the delightful touches that Make-A-Wish put into Julianna’s room. It was meant to stay on her dresser, but for a while, J insisted that the picture go with her everywhere. We laughed at her outrageousness — who carries around a fancy, framed picture of themselves?

Then again, good things usually happen when we follow Julianna’s lead. And really, wouldn’t we all feel better if we always had a fabulous photo at our side, reminding us of our happiest moment?

July 2015.

I think so. (Tiara optional)

You can also go digital!

Thanks to JSP, one of several friends who say Julianna is their spirit animal. (I love that she just happened to have a tiara…)

Happy, Bold, Confident, Commanding

August 8, 2015 / Michelle Moon / 20 Comments

In an e-mail to her friends, my mom had the perfect description for Julianna: she is “happy, bold, confident and commanding.”

HAPPY:

May 2011. Happy, bald and beautiful.

Winter 2014. She makes me so happy.

June 2015. Alex has always been able to make her laugh. (Photo by Aubrie LeGault, Capturing Grace Photography)

BOLD:

2014 – one of her hospitalizations. I swear, I don’t know where she learned to flirt.

Oct 2014: — To a male PICU nurse:

J: You are very handsome.

CONFIDENT:

7 June 2015 – (recorded in an e-mail to friends)

J learns that she is going to meet a new nurse soon.

J: Make sure you tell her about me

M: Ok – what’s the most important thing I should tell her?

J: I’m funny.

M: Uh huh.

J: Cute. Smart. Gorgeous

M: OK…

J: My eyes look like almonds. I’m honest. One day, I realized I like straight hair.

Summer 2015. Almonds. (Photo by Aubrie LeGault, Capturing Grace Photography)

COMMANDING:

Summer 2011.

Summer 2015. Leg exercises.

Steve exercises J’s legs during body breaks. The TV is usually on. Whenever Steve pauses and looks at the TV, J says:

J: Dad, Dad, exercise!

And if he looks away again,

J: Dad, focus what you’re doing!

A Day in the Life

August 4, 2015August 5, 2015 / Michelle Moon / 1 Comment

A few weeks ago, my oldest friend (as in history together, not age) came to visit. She is in grad school and decided to study pediatric palliative care for one of her assignments. Huge thanks to Aunt Karen!

“The Claws are for Bad Guys”

August 1, 2015August 5, 2015 / Michelle Moon / Leave a comment

Banner photo by Aubrie LeGault, Capturing Grace photography

Last December, Julianna told Make-A-Wish that she wanted 1) a white kitten named Snowflake and 2) a pink princess room with sparkle. Make-A-Wish came through big on the second wish:

Jan 2015. Make-A-Wish princess room.

Jan 2015. Kitty corner (Steve’s creation)

I was in charge of the first wish. I got the kitten part right: this is George.

Dec 2015. Humane Society meet and greet.

Julianna wanted a cute and cuddly friend. He has turned out to be a good therapy cat.

Dec 2015

Dec 2015

George was just three months old when he came to us, and had a lot to learn.

Dec 2014 – journal entry

First day with George. He jumped on the couch while I was trying to do J’s treatment. I put him down. He jumped right back up. Down again. After the third time, Julianna turns to me.

J: Mom, I think George is stupid. Don’t tell Dad

(She really wouldn’t let me tell him for a while. I think she was afraid that George would be sent back. And she knows we don’t like that word…)

We tried to teach George through positive reinforcement, and asked Julianna to reward him when he was being good.

Jan 2015 – journal entry

George comes into J’s room and is calm:

J: Welcome, George, welcome! I love you. You’re so kind. Thank you. Welcome to my room!

Another time.

J: Welcome to my room, George! You’re so beautiful. I mean, handsome. Thank you. I love you.

As George become more of an established presence in our house, he showed up in Julianna’s imagination and role-playing:

26 Feb 15 – journal entry, conversation with Steve

J: I am a kitty. A brown kitty.

S: You are a cat with brown fur and cute eyes. And soft paws

J: I have claws.

S: You have claws? But you never use them, right?

J: The claws are for bad guys.

S: Oh.

J: The biting is for really bad guys.

“Mom, Who Will Marry Me?”

July 26, 2015August 5, 2015 / Michelle Moon / 1 Comment

July 2012. J calls this “my wedding dress.”

July 2012. A&J were the ring boy and flower girl in my cousin’s wedding.

Bedtime conversation, 25 July 2015

J: Mom, who will marry me?

M: Julianna, you are four.

J: I’m pretending!

M: OK. Um, how about Kristoff? Is he OK?

J: Mom, come on. I’m not in Arendelle.

Winter 2014. Not in Arendelle.

Cabbies, Kimchee and BiPAP

July 24, 2015July 24, 2015 / Michelle Moon / Leave a comment

The summer before I started eighth grade, my mom sent my brother and me to Korea. It was my first trip to the motherland since immigrating to the US at age two. There were many wonderful things I discovered. I also got lectured by taxi drivers (plural) about my atrocious Korean.

They went something like this:

It doesn’t matter if you live in America. You are Korean.
You cannot forget this.
You will always look Korean; therefore, you must speak Korean.
How will you pass along your heritage to your children if you don’t know Korean? (Note : I was 12.)
You need to tell you parents to speak only Korean at home.

I was able to understand everything they said, but my Korean was not good enough to employ sass. Even sadder, my Korean language ability was probably at its peak during that time of my life.

In my defense:

— My parents decided to speak English at home so that we could assimilate. It worked. I am quite fluent in English

— After age 2, I lived in: Missouri, rural Massachusetts, Florida, Mississippi, central (not coastal) California, Colorado, central Texas, Arizona and southern Washington. There are opportunities to speak Korean in those places, but doesn’t this explain some things?

(In full disclosure, I also spent a year in South Korea – but on a US military base. As long as I didn’t venture very far away, my Korean was impressive. Like, people actually brought me along to translate.)

In the end, the Korean cabbies were right. I hope this makes them proud.

Journal entry — 2 Feb 15

J has a very sharp sense of smell & often comments on stinky food: egg salad, fish, etc.

She thinks kimchee is stinky. One day, I told her that it is her destiny to love kimchee because she is half Korean.

Tonight I ate my dinner on the couch next to J. She is on BiPAP.

M: J, can I go get some kimchee now? ?

J: Yes.

M: Are you sure? The smell won’t bother you?

J: No.

M: Is it because you are half Korean? (hopeful)

J: Because I have BiPAP on.

Aug 2011.

A long, long time ago.

“I Just Want to Rest!”

July 19, 2015 / Michelle Moon / 1 Comment

This is J doing her version of the “Pop and Lock.” Competent dancers may think this is a simple move, but I know better. It’s not that easy to isolate the shoulder muscles and make the perfect little “pop.” (Tip from J: “Your head has to be stable.”) J’s dance moves are like her perfectly curled eyelashes: they did not come from me.

15 Feb 15 – journal entry

J was down for her rest period this afternoon. We were watching a Disney movie. I broke out into a little jig. (Koreans are the Irish of Asia, after all.)
M: J, am I a good dancer?
J: avoids eye contact
M: Am I?
J: sighs
M: Do you think I’m a good dancer?
J: I’m just trying to rest!