Summer on Our Own Terms
Summer used to fill me with dread.
As the parent of a child with a rare disease, the season my other children counted down to was the one I quietly feared.
Summer was supposed to be carefree—filled with vacations, backyard adventures, and long days spent making memories together. Instead, it often meant hospital visits, medical appointments, treatments, and trying to balance the needs of all three of my children.
For several years, summer felt like something we simply had to survive.
Then one year, something changed.
I made a decision to stop waiting for life to feel "normal" and instead begin creating joy within the life we already had.
That decision changed everything.
When Summer Looks Different
Before becoming a rare disease parent, summer represented freedom.
It meant slowing down, spending time together, and enjoying all the little moments that make childhood special.
But after my daughter's diagnosis, everything shifted.
While her siblings looked forward to sleeping in, playing outside, and family adventures, she never really got a break.
She needed year-round tutoring just to keep up academically. Some summer days were spent lying in a hospital bed receiving eight-hour infusions. Others were filled with appointments or managing symptoms.
Even on her healthiest days, we had to carefully protect her from the sun with specialized clothing, wide-brimmed hats, and heavy sunscreen.
Life no longer revolved around spontaneity.
Everything required planning.
Choosing Joy Instead of Waiting
After several difficult summers, I realized something.
If I kept waiting for life to become easier before we started making memories, we might be waiting forever.
One of my favorite movie quotes comes from The Shawshank Redemption:
"Get busy living, or get busy dying."
I chose to get busy living.
That didn't mean pretending our challenges disappeared.
It meant asking a different question:
How can we make this work for our family?
Instead of avoiding vacations, I researched the closest children's hospital before booking our trip.
For beach days, I packed a pop-up shade tent so my daughter always had somewhere cool to rest.
Sometimes we flew instead of driving because long hours in the car increased her pain.
We stopped trying to recreate the life we thought we'd have and started building a meaningful one with the life we did have.
Were there disappointments?
Absolutely.
We had plans that fell apart.
Unexpected medical issues.
Plenty of moments that didn't go as planned.
But we also laughed.
We made memories.
And we found joy in places we never expected.
Six Ways We Reclaimed Summer
If you're new to life with a rare disease—or simply feeling overwhelmed by another summer—I want you to know you're not alone.
These are six strategies that helped our family reclaim the season.
1. Create Your Medical Safety Net
Before traveling, identify the nearest children's hospital or specialist.
Simply knowing help is nearby can bring tremendous peace of mind and allow you to relax enough to enjoy your time away.
2. Keep a "Summer Ready" Kit
Pack the essentials in one place so you're always ready for spontaneous moments.
Include items like:
Sunscreen
Cooling towels
Medications
Water
Snacks
Comfort items
Preparation makes flexibility much easier.
3. Choose Connection Over Perfection
Family memories don't have to look like everyone else's.
A shorter outing.
Extra shade.
Leaving early.
Changing plans halfway through.
Those moments still count.
Meaningful experiences matter far more than perfect ones.
4. Make a Family Summer Wish List
Invite everyone—including your child with medical needs—to share what they'd love to do this summer.
Then work together to find creative ways to make those experiences possible.
When children participate in planning, they also become part of the solution.
5. Give Yourself Permission to Pivot
Symptoms flare.
Energy changes.
Plans evolve.
Flexibility isn't failure.
It's one of the greatest strengths rare disease families develop.
6. Lean on Your Community
You don't have to figure everything out alone.
Other rare disease families have already discovered helpful travel tips, products, accommodations, and creative solutions.
Ask questions.
Share ideas.
Sometimes the greatest encouragement comes from someone who's walked a similar path.
Summer Doesn't Have to Be Perfect
Summer still doesn't look the way I once imagined it would.
There are moments when I grieve that.
But I've learned that joy isn't found in waiting for life to become what it used to be.
Joy is found in embracing the life we have today.
So this summer, I hope you'll give yourself permission to let go of perfection, celebrate what is possible, and create memories that fit your family's unique journey.
Because even in the midst of rare disease, beautiful summers are still possible.
Get busy living.
You don't have to navigate this journey alone. If you're parenting a child with a rare, chronic, or medically complex condition, explore the Resilient Parent Toolkit for practical guidance, encouragement, and support—or schedule a consultation to receive personalized support for your family's journey.