“I Can’t Walk, Remember?”

Julianna is highly quotable. She has the gift of finding the right words at the right time — and with the right delivery.

This is a collection of her best one (and two) liners, in rough chronological order.

18 months (approximately)

Like most kids, Julianna learned to talk by mimicking. She’s still really good at this.

Age 2:

We moved to Arizona when Alex was two years and Julianna was 4 months old. We hit gold with daycare providers again. For over two years, a wonderful woman named Margi cared for our children. Her home was as clean as it was warm, and it housed four generations of her family.  Her husband, Frank, also helped. As Margi said, J had him “wrapped around her little finger…tight!” There were many arms to hold and love Julianna. For a while, Margi worried that this was the reason that Julianna didn’t walk.


Jan 2012. “Frankie” (this is what J called him. She is first and only person to call him this.) is sitting behind her. Just two days ago, J asked if she could go back to Margi’s house.

As you can imagine, J’s verbal skills did not lag. She was a chatterbox from the beginning. One day while I was driving her and Alex home, she said:

“Frank says I talk too much. That’s not fair!” 

Ages 3-4:


The journal. It took a while to find one that matched her room.

I started recording Julianna’s words in a journal shortly after she turned 4. This is a list of one-liners that she used starting at age 3. I think that she learned most of these from her favorite TV shows.

— All right, all right, girlfriend.

— Relax, princess!

— Sing it, baby!

— Don’t freak out.

— What the heck?

This one is a Julianna original. She still says it a lot

“I love everyone – except for bad guys.”


June 2015. For Julianna, “bad guys” are toys who do naughty things. Typical offenses include not sharing or rolling in mud puddles.  She puts them in “jail” — fancy ones, of course.

Nov 2014:

Julianna really hates bedtime.

Me: It’s bedtime, Julianna

J: No it’s not. Bed, with a circle and a line through it!

(She was verbalizing a prohibition sign for “no bed”. I was not able to find one on the internet – such is the stuff of her imagination).


Drawing by Steve

Feb 2015

J is in her room. She sneezes.

J: I must be allergic to chandeliers.


Jan 2015. J sees her chandelier for the first time. She is most definitely not allergic.

May 2015:

J does not like messy hair. Hair is not my priority.

J (to me): Your hair is unpleasant.


June 2015. Photo by Aubrie LeGault, Capturing Grace Photography

May 2015

J is with Steve. She is being impatient about something.

S: Hold your horses!

J: I don’t have horses. I have ponies.


Summer 2015. J and two of her ponies. And matching hair extensions.

Shortly before her 5th birthday:

J’s nurse: So Julianna, what are you going to wear for your birthday?

J: My birthday suit, of course. Naked!! (pronounced NAY-ked…)


Aug 2015. Princesses wear birthday gowns, not birthday suits.

Age 5

(This is my personal favorite. She said it just a few days ago.)


This morning. I can tolerate feather boas. Alex, not so much.

I know that it’s weird, but I can’t be around feathers because I am scared of birds. Julianna knows this.

A few days ago, I find some feathers in her room. I ask her where they came from.

J: It wasn’t me! I can’t walk, remember?

“But God Made me Perfect!”

“I’m four today. I can’t walk. Will I ever walk?

This was the first thing that Julianna said when she woke up on her fourth birthday. A few seconds after the words left her mouth, she changed the subject.


August 2014. 4th birthday.

One of the most remarkable things about J is the way she accepts her physical condition. There is no self-pity, ever. She knows all about the things she can’t do; she just doesn’t feel bad about it.

I wish I could say that she learned this from me, but it’s quite the opposite. Today I am able to read her words with just wistfulness. When I actually heard those words almost one year ago, I was gutted.

When your child has an awful disease, your heart can be broken in a million different ways. There’s the pain of unrequited hope when she doesn’t defy the odds. You ache — sometimes physically — when they lose milestones. And if the incurable disease becomes terminal, there is despair. It is too much for the already fractured mother’s heart.

I have been in all those places, and I know that there will be more to come. For now, I’m in a better place. It doesn’t mean that I’m at total peace with our situation. I believe that there are some questions that cannot be answered on earth, and I still wrestle with the cruelty of it all.

The shift came gradually. As with most things related to J’s illness, I have found it best to follow her lead. She has the important things figured out. If she does not mourn for a life that she cannot have on this Earth, how can I dwell on the what-ifs or why-nots?

My time here with Julianna is limited, and there is so much more joy to experience. I am grateful that this is my focus now.

April 2015

J has watched “Beauty and the Beast” and now wants to role play.

J: Mom, be Gaston.

M: OK. Hi, I’m Gaston.

J: I’m four years old. I can talk but I can’t walk.

M: Oh well…. No one’s perfect.

J: But God made me perfect!


July 2015. Our belle Julianna.