Blood Draws and Movie Days: Finding Balance in the Chaos

 

If you’ve ever had to coax a kid into the car knowing they’re headed for something unpleasant, you already know the unique mix of dread and determination that comes with it. For us, that’s every four months when it’s time for Dot’s lab work at Dell Children’s.  

Dot, my 10-year-old firecracker, has adrenal insufficiency, which means her body doesn’t produce certain life-sustaining hormones. Routine lab work isn’t optional, and while she’s a trooper, let’s be real: no one *likes* getting poked with needles.  

The Lab Day Ritual  

Here’s how it goes:  

First, there’s the pep talk. “You’ve got this, Dot! Starbucks after—venti caramel ribbon crunch, your pick!” (Bribery? Absolutely.) Then the drive, where I try to keep things light with bad jokes and her favorite songs on repeat.  

The lab itself is hit or miss. Some days, we’re out like pros. Other days, veins play hide-and-seek, and it’s a circus act. Thankfully, the PICC team at Dell Children’s is incredible, complete with a vein-finding scanner (magic!) and endless patience.  

The Need for Balance  

As much as we stay positive, there’s no denying that life with a rare disease can feel heavy. Appointments, medications, and emergency plans take a toll. That’s why I’ve learned—sometimes the hard way—that we need balance.  

Enter: Moana 2.  

When the trailer dropped, Dot was obsessed. “We HAVE to see it!” she declared, practically bouncing with excitement. My first instinct was the responsible parent move: “Maybe we can catch it this weekend after school?” But then I thought about everything she handles daily—doctor appointments, medications, blood draws. If anyone deserved a midweek escape, it was her.

So, I emailed her teacher, cleared the afternoon, and said yes. Because sometimes, life isn’t about sticking to the schedule—it’s about making memories.

Movie Day Magic  

Skipping school to see a movie felt like the mom version of sneaking candy into the theater (which, yes, I also did). Dot was glued to the screen, belting out songs and fully immersed in the adventure. For two hours, there were no labs, no meds—just Moana, Maui, and a boatload of magic.  

The Takeaway  

Parenting a medically complex kid is a constant tightrope walk. You want to keep them safe, but you also want their life to be more than doctor visits and prescriptions. It’s exhausting, yes, but also beautiful in ways I never expected.  

Dot’s rare disease has taught me to cherish the little things—the Starbucks runs, off-key car karaoke, and those moments when she forgets she’s anything but a regular kid.  

So, if you’re in the chaos of appointments or life’s other challenges, here’s my advice: make time for the fun stuff. Play hooky. See the movie. Eat the popcorn. Because these are the memories that matter most.