Cover Story: The Courtship of Julianne's Father

Appreciating my 5-year-old's worldview

 


Writing about women is difficult for men. Actually, almost everything about women is difficult for men.

I feel lucky to have been blessed with wonderful women in my life, all of whom I'd be happy to put in the spotlight. My mom, who raised seven kids. My two immigrant grandmothers. My patient wife. My four sisters. Aunts. Cousins. Sisters-in-law.

Friends. Co-workers.

But I've been asked to write about the smallest and youngest woman in my life, my daughter, Julianne.

Anyone who's a parent will understand when I say she's filled every empty crevice in my life in ways I never could have imagined before she was born.

How does a father describe his relationship with a 5-year-old?

In many ways it's very simple: You feed her, clothe her, bathe her, take her to daycare, read to her, tuck her in at night, buy her too many things, hang out.

If she wants something, she asks.

You set rules, you argue, you reason, you move on.

In other ways, our relationship is incredibly complex.

Is she picking up my bad habits? Am I spoiling her? Am I teaching her the right values? Am I the worst father ever?

That part of the relationship, of course, goes only one way with a 5-year-old.

It's all in my head and my heart. Julianne couldn't be bothered with such weighty issues.

And that's fine. In fact, it's perfect.

When you're 5, the world is a pretty small place. You can't remember much that happened a few weeks ago, and the future is a hazy concept.

Time and distance mean nothing.

You know how we adults talk about "living in the moment" and learning to appreciate what's in front of us?

That's Julianne, 24/7.

And, in some small way, a bit of that 5-year-old worldview has rubbed off on me. I'd like to think I'm a better person for it.

Take Julianne's No. 1 gift request on her Christmas list last year — a "My Size Barbie," a 3-foot-tall hard plastic doll that's as big as her.

She specifically requested the African-American version.

So on Christmas morning we unwrapped the doll, which Julianne introduced as her new sister, Jasmine, and dressed her in some of Julianne's clothes. I jumped every time I walked into a room and saw the doll propped up in the corner or lying in Julianne's bed.

After the first big snow in January, Julianne insisted on taking Jasmine outside to play. We bundled the doll up in Julianne's spare coat, boots, gloves and hat and the three of us tromped to the front yard.

We had a great afternoon. Julianne had me position Jasmine's arms to help build a snowman, and we moved the doll's arms and legs as best we could to make snow angels.

After each activity Julianne straightened Jasmine's hat and she brushed the snow off her leggings.

When we were done, I left the doll outside with our wet coats and boots, and we headed out for a late lunch. My wife and I laughed at the scene in our front yard: What must the neighbors have thought when they saw a frozen black girl sitting on our front porch?

Had we invited Julianne's friend over to play and then abandoned her to the elements?

Julianne, however, was thrilled we played along and that thrilled me.

And that's all that really mattered.

Parents spend a lot of time planning, plotting and worrying about our child's path to adulthood. It's always about the future.

I'm focusing on the present with Julianne, a natural antidote to my usual routine as a business owner and a parent.

In her, obliviousness is a joy I'm learning to celebrate.

Sure, she knows the anomalies in her little world. She knows some kids are white and some are black, that some live in big houses and some in apartments, some only have a mom and no dad and that some live in another city and some down the street.

For a 5-year-old, though, there's no context for the differences and so those differences do not matter.

One other thing Julianne knows is she has cystic fibrosis (CF) and no one else in her world does.

She was diagnosed with CF at 6 months old.

The daily routine associated with CF actually fits in nicely with Julianne's here-and-now point of view.

Every day there's chest percussion therapy ("big pats") and inhalation therapy where she's hooked up to a nebulizer and various medicines, vitamins and nutritional supplements.

There are the ubiquitous enzyme pills taken with every meal, snack and drink.

Julianne undergoes the routine every day with the kind of complaining and whining you'd expect from a 5-year-old.

But it's all she's ever known. It's her life.

The other day my wife told me the two of them were in the car and Julianne asked from the backseat, "Mom, why do I take the pills and do the breathing treatments?"

She told Julianne it was because she had cystic fibrosis.

"No I don't!" Julianne harrumphed in return.

And so it begins.

It's easy imagining the parade of questions coming in the next few years: "Dad, am I sick?" "Dad, why do I have this illness and others don't?" "Dad, am I always going to have to do these treatments?" "Dad, why am I different?" "Dad, why did you let this happen to me?"

And then the ultimate one: "Dad, am I going to die?"

Actually, it isn't easy to imagine.

It's difficult. It breaks my heart.

No child should have to ask their parents those questions.

It's not fair. It's so, so wrong.

I've learned that kids with chronic illnesses usually handle the questions, problems, concerns and crises better than their parents.

Adults struggle to control our guilt, fear, shame, pity, rage, despair and many of us lose the battle.

The kids deal because their illness is part of them — as much as their fingers or their voices or their names. Today's another day, and that's enough for them.

I want to believe that today's enough for me, too.

With Julianne's help, I'm getting there.

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