By Laura Spiegel / Originally written in May 2018

Boys (And Girls) Of Summer

It’s Memorial Day weekend, and our family is more than ready to usher in the start to summer.  School is out, the pool is open, and the grills are fired up.  It’s time to bring on the s’mores, the sprinklers, and all the fun this season brings.

As the mom of an almost-five-year-old with cystic fibrosis, the past few weeks have already brought me so much joy.  Because in between the day-to-day chaos of life, I’ve gotten to watch my daughter spread her wings and embrace the season with nothing short of wild abandon.

She has run full-speed through the sprinkler.  She has smiled as a gooey marshmallow melted on her tongue.  She has leapt into the neighborhood pool.  She has cheered for fireworks.  She has swung barefoot.  She has saved worms by plucking them off the sidewalk and shepherding them into the cool grass. 

She has pedaled her bike furiously down the street, streamers flying.  She has chased after the ice cream truck.  She has engaged in a fierce, albeit brief, water gun siege.  She has gone to the park.  She has played on a soccer team.  She has learned to throw a football.  (Kind of).  She has planted a fairy garden.  She has whispered stories.  She has smelled the flowers.

And she has made friends.  So many wonderfully sweet friends in the neighborhood who come by first thing in in the morning and say good-bye as the sun begins to set. 

Friends who write her notes and bring her pet rocks and trade Pokemon cards while they huddle together in circles on the sidewalk.  Friends who sit next to her while she does her mask and vest treatment.  Who rub her back just to feel the jiggles and sit extra close so their voices tremor when they talk.  One friend has even renamed the vest the “Jiggle Jaggle.” 

Some nights, we take the vest machine onto the porch so my daughter can feel like she’s still a part of the outdoor action while she does her treatment.  There’s something about being in the fresh air that makes it finish faster, I think.  And before she knows it, she’s back in the game.

Every one of these moments brings me a smile.  Because they are examples of how my daughter is just like all the other little friends on our street.  She laughs, she plays, she fights, she loves, and she just is.  Her CF doesn’t define her or hold her back. 

I know that she’s only five, and that we have many more decades ahead of us, but I really hope that we can hang onto this feeling of normalcy.  Yes, she has to do mask and vest.  Yes, she has to swallow her pills.  Yes, she has to wash her hands before she eats and doesn’t partake from the communal bag of chips.  But she doesn’t let any of that slow her down.

This week, our Indiana community experienced an awful dose of reality at one of our local schools.  There is so much happening in the world that is bad.  There is so much talk about what’s happening to our kids.

But on our street, I see little ones who are loving and accepting.  Little ones who patiently sit by my daughter while she counts down the minutes until she can race out the door again.  Little ones who would do anything for each other and who are doing a darned good job at just being kids. 

My daughter included.

Life isn’t perfect.  But that doesn’t mean that it can’t be hopeful and filled with joy.  To everyone out there who is also touched by CF, here’s to summer.  Grab a glass and enjoy the moment.  I hear they don’t stay kids for long.