By Laura Spiegel

Last month, I had the opportunity to share my family’s journey with cystic fibrosis on the radio.  I went to the radio station, sat in front of a ridiculously huge microphone, and answered several questions about my daughter’s diagnosis and the impact it’s had on our family.      

This was a great experience, and I left feeling excited that our story could serve as a reference point or inspiration for others.  But there was one thing about it that irked me.  So much so that now, a full month later, it’s still on my mind.

It was the amount of times the interviewer referred to my daughter as “sick.”  “Tell me how you felt when you first got the news that she was sick.”  “What is like for your family raising a child who is sick?” And so on.  The interviewer meant no harm, and I know that these were the same questions countless other families were asked that day.  But there was something about it that left me jarred.  Unsettled.  Indignant almost.

“My daughter is in so many ways just your typical three-year-old,” I replied.  “She loves Minnie Mouse, dancing to Alvin and the Chipmunks, and pretending to be chased by a purple cat.  She has a silly sense of humor and a heart of gold.  She also happens to have cystic fibrosis.”  I’m sure I wasn’t that eloquent off the cuff, but you get the point.

Why was this exchange so unsettling to me?  I think it’s because my daughter, like all little ones, has not yet been defined.  Her life is a blank slate with so much of her journey yet to come.  It’s true that cystic fibrosis will always be a part of her, and I don’t want to ever discount or make light of that.  But it’s not the entirety of who she is.  To define her as a “sick child” or to otherwise attempt to center her life around her CF seems limiting. 

I know that’s not what the interviewer was trying to do.  The whole point of the radio show was to talk about our personal healthcare situations.  But the experience made me more aware of my desire --- no, my need --- to make sure that my daughter’s life isn’t always so singularly defined.  So black and white.  I want her to live in color. 

I’m coming to realize that there are small things that I can do to help make this happen.   For example…

Earlier this week, my daughter was watching Winnie the Pooh for the umpteenth time.  In one scene, little Roo is being tucked in by his mama, Kanga.  It’s a relatively simple scene with Kanga reading Roo a story, singing him a song, and tucking him in with a kiss.  We’ve seen it a gazillion times.  But on this particular evening, snuggled next to me on the couch, she turned to me and asked, “Why is Roo going to bed without doing fishy mask and vest?” 

That simple question cut to my heart.  Doing respiratory therapy is just part of my daughter’s every day bedtime routine, and she doesn’t yet realize their uniqueness.  “Roo doesn’t have CF,” I replied with a hug.  “So he doesn’t get to do those special things to help him stay healthy.”  “Okay,” she replied, and that was that.

Likewise, my six-year-old son has recently realized that not all little sisters have CF.  When he used to meet new kids his age, he’d sometimes whisper in my ear, “Does his little sister have CF?”  “No,” I’d tell him gently.  “Not many people do, so probably not.”  And while I stood there, each time cut to the very core, he’d matter-of-factly accept what I’d said and move on.    

My kids are still so young, and these little conversations don’t happen often.  But when they do, I’m acutely aware of the opportunity to teach my kids about the special role that CF has in our otherwise full and busy life.  I doubt my explanations are perfect.  Actually, I’m sure they aren’t.  But as we talk more and more as a family about what CF is - and what kinds of things we do because of CF that maybe others don’t do - we’ll probably get better at it.  I don’t doubt that the questions and conversations will get tougher as my kids grow, and I hope to learn from others how best to tackle that. 

But I think for right now, the important thing is that we’re talking about it as a family in a way that is as natural and normal as possible.  To us, our daughter isn’t a sick child.  To our son, she isn’t a sick sister.  She just is herself.  And that is a wonderful thing. 

The same goes for friends and acquaintances.  Sometimes, when a close friend or neighbor asks about my daughter, my first instinct is to update them on her health.  When I do that, I feel like I’m painting her in black and white.  I have to remind myself that while we are blessed with an awesome support network that is always willing to lend an ear, people deserve to know our daughter in all her colorful glory.  No one is going to shut me down if I go on and on about her latest respiratory bug or how much I detest cold-and-flu season.  But I also try to remind myself that others are also curious about her full self.  How does she like preschool?  Which sport will she play in the spring?  Is she still obsessed with Minnie?  (Loves it, soccer, and yes, respectively).    

I’m taking the same approach with social media.  I’m happy to hit Facebook friends up for donations to the annual CF walk or share a CFLF blog that I’m particularly proud of, but I try strike a balance.  Online friends are probably not going to hear about my daughter’s recent clinic visit or lab results.  Instead, they are going to hear about how she literally requested a “new mommy” for Christmas.  Preferably one who is “blue” and “nineteen.”  They are going to hear about her trick-or-treating in the pantry in July.  They are going to see my daughter as a person, not just a patient, and one who shines brightly to boot.  

Don’t get me wrong.  I don’t at all want to hide my daughter’s CF.  I love sharing our story (obviously), and I love hearing those of the other amazing friends we’ve made in the CF community.  The presence of CF in our family has brought us closer and given my husband and me a better perspective on what’s important and where our time should be best spent.  I never want my kids to feel as if CF needs to be hidden.  It’s a big part of our lives, and it should be celebrated.  But it alone does not define my daughter.

My daughter is three years old and loves Minnie Mouse, dancing to Alvin and the Chipmunks, and pretending to be chased by a purple cat.  She has a silly sense of humor and a heart of gold.  She also has cystic fibrosis.

I can’t wait to see what she becomes next.