When I Told My 4-Year-Old Daughter That Nobody's Perfect

“I’m 4 today. I can’t walk. Will I ever walk?”

This was the first thing my daughter Julianna said when she woke up on her 4th birthday. A few seconds after the words left her mouth, she changed the subject.

One of the most remarkable things about J is the way she accepts her physical condition. There’s 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 she learned this from me, but it’s quite the opposite. Today I’m able to read her words with just wistfulness. When I actually heard those words almost a 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’s despair. It’s too much for the already fractured mother’s heart.

I’ve been in all those places, and I know there will be more to come. For now, I’m in a better place. It doesn’t mean I’m at total peace with our situation. I believe 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’ve found it best to follow her lead. She has the important things figured out. If she doesn’t mourn for a life 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’s so much more joy to experience. I’m grateful this is my focus now.

Below is a conversation Julianna and I had in April 2015:

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

Julianna: Mom, be Gaston.

Me: OK. Hi, I’m Gaston.

J: I’m 4 years old. I can talk, but I can’t walk.

M: Oh well… no one’s perfect.

J: But God made me perfect!

Follow this journey on Julianna Yuri.