“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.

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!