“I’m Bossy but a Little Bit Polite”


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.



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…)

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