Summer Looks Different Here: Between Hospitals and Happy Meals

Halle learning archery at Camp Boggy Creek. Special support from Nurse Kelley.

When most think about summer, you may conjure images of beach vacations, sleepaway camps, lazy afternoons, and Pinterest-worthy bucket lists. I know I did when I first imaged having a family. But our reality looked different from what was expected. The Heilman Summers were measured in therapy appointments, hospital visits, infusion schedules, and specialist calendars. They revolved around infusion supplies, medications packed in coolers, and carefully planned outings. But they were also filled with laughter, traditions, and memories that became uniquely ours. I learned early on that if I waited for life to be "normal" before making summer memories, we'd never have one. So we created our own version of summer.

B playing on the pirate ship at All Children's Hospital after a long Summer day in immunology.

One of our favorite traditions was stopping at the pirate ship on the patio of All Children's Hospital after a long day of appointments. The kids had spent hours getting lab work, meeting with the immunologist and running downstairs for a quick CT scan. Before we headed home, I'd let my three kiddos climb the ship and imagine they were pirates finding their next voyage. We would then continue the celebration with the ultimate bounty... a McDonald's Happy Meal, and if they were super good (and if the machine was working), a McD's icecream!

To someone else, it may have looked like an ordinary playground stop or a basic burger but to us, it was reclaiming the day. It was saying, Yes, you spent your summer morning at the hospital... but you still deserve to create some fun memories!

Fairy Camp with Gram and the cousins

When B was a little, our summer routine often looked like dropping Halle and Neeley off at Grammy's house before heading to the hospital for B's 8-hour infusion day. While I sat beside an IV pole for hours with one child, Grammy made sure the girls were building fairy gardens with their cousins, roasting marshmallows over the fire, staying up too late, and sleeping over.

I couldn't give every child the same day. But I could make sure every child had something special. The baby received the medical care they needed while the girls experienced the magic of childhood. Looking back, I realize those fairy camps weren't just fun, they were Grammy's way of making sure disability didn't define everyone's summer.

Shannon and Halle playing Hannah Montana dress up on a fun Summer day.

Of course, there were still afternoons in the pool, neighborhood adventures, and time spent with friends who simply understood. Some of my favorite memories when the kids were little were with Janine and all of our kids. She was raising children with medical complexities too, so there was never an explanation needed. We packed medications alongside sunscreen. We managed feeding tubes while the kids splashed. We celebrated the little victories together because we knew how hard they were won.

Traditional summer camps, however, were another story. The infection risk was too high. There were years Halle had a central line and a feeding tube. Sleepaway camp felt completely out of reach. But that didn't mean we stopped looking for ways to give her the experiences every child deserves. One of those opportunities came through Girl Scouts.

Halle loved her troop, and thanks to two incredible troop leaders, Tracey and Michelle, she was able to attend Girl Scout camp. There was just one small difference from everyone else's experience, I came along, and on one special adventure to Washington D.C., Grammy (and some box wine) came along too. I didn't join because I was a helicopter mom, but because I needed to be there to manage any medical emergencies. It was simply part of our family's reality. But again - this allowed me to create even more memories with Halle and all of Troop 5! I remember the girls giggling in the cabin, nights dancing, long/sweaty hikes wearing our bandanas, making crafts, and feeling like every other Girl Scout.

Halle's last trip with the girls of Troop 5, enjoying a little Butterbeer at Harry Potter World. Summer 2015

Her troop embraced her completely. They didn't see her as someone with a rare chromosome deletion, but they saw her with a wicked sense of humor and they saw her as their friend. Some of my favorite summer memories come from those camping trips. We laughed until our stomachs hurt, and somewhere along the way we came up with our unofficial troop chant: "Troop 5, Look Alive... Everyone Will Survive... Do a Little Jive...Do a Little Jive." It was silly. It was catchy. And before long, everyone was singing it. Looking back, that little cheer and the shimmy each girl did as they sang and hiked through the camp, brought some of the most treasured memories for summers with Halle.

Those weekends reminded me that inclusion doesn't always require removing every challenge. Sometimes it simply requires people who are willing to make room, adapt when needed, and make sure every child gets to join the adventure. Troop 5 gave Halle so much more than a camping experience. They gave her the chance to belong...to be a Girl Scout first, a friend second, and a child with medical needs rarely came on the list. That is a gift our family will never forget.

Halle and Neeley in front of the entrance to Camp Boggy Creek. We always tried to be the first ones in line to enter camp each Summer.

Then, one summer, we discovered a place that changed everything. Camp Boggy Creek, one of many Seriously Fun Camps. Founded in 1996 by actor Paul Newman and General H. Norman Schwarzkopf, Camp Boggy Creek was built on one simple but extraordinary belief: every child, no matter their illness, deserves to experience the magic of summer camp. And they truly mean it. For the first time, our children weren't the kids who needed accommodations. They were simply campers.

Neeley, her first summer at Camp Boggy Creek.

Both Janine's family, and the three Heilman kiddos were fortunate to experience this adventurous camp in central Florida. They went fishing, boating, swimming, practiced archery, made crafts, rode horses, danced, laughed around campfires, and built lifelong friendships with children who understood their lives without needing an explanation.

There was also something extraordinary behind the scenes. A fully staffed medical center. Nurses. Physicians. Crash carts. Medication rooms. Everything needed to safely care for children with complex medical needs. Halle was able to receive her infusion before one night's dance party... right there at camp! Medical care became part of the background instead of the focus. For the first time, I wasn't the only one carrying the weight. There was a team of "camp leaders" who took care of my kids and allowed me a week to just breathe - knowing my kids could simply be kids.

Popscicles at camp are always the way too cool off.

Each of the kiddos found something different at Boggy Creek. Halle found confidence. She wasn't the only one in the room with medical issues. She wasn't the one who stood out. She was simply Halle. She faced her fears and was able to be away from home and find the joy in her own independence. B found freedom. They could run, fish, swim, laugh, and receive their treatments without feeling different and without mom around to worry about everything. And Neeley found inclusion. As the sibling of kids with significant medical needs, she had often watched from the sidelines. At Boggy Creek, she got to experience camp alongside her siblings. She belonged there too.

Janine and her family in front of the theater at Camp Boggy Creek

Janine's family also found inclusion as her entire family was able to participate in one of the weekend Family camps at Boggy. Morgan was offered a one-on-one counselor while her younger sisters had a counselor to themselves and Matthew had someone to keep him busy through the weekend. They did all the camp adventures and even joined in the evening talent show! This camp was the only way Morgan could experience serious camp fun, with her family by her side!

Neeley and B painted a sparkly rock with Halle's name on it during the week at camp they attended after Halle's funeral. Processing grief through fun.

One of the greatest gifts Camp Boggy Creek ever gave my family came during the hardest summer of our lives. Just weeks after Halle died, Boggy welcomed Neeley and B back for summer camp. They knew our family. They knew our children. They knew our most difficult loss. And they knew exactly what Neeley and B needed.

For one week, my younger two weren't grieving children defined by loss. They were simply campers. They laughed. They played. They healed in ways words can never fully describe. That is the power of a place that truly understands. That is the power this camp holds.

When I look back now, I don't remember summers defined by hospital appointments.

I remember pirate ships outside the hospital after long clinic days. Happy Meals that tasted like celebration. Fairy camps at Grammy's house. Pool days with friends who understood. Girl Scout camping trips where everyone made room for Halle. And a sleepaway camp where all three of my children were finally free to simply be themselves.

Halle and I enjoying S'mores at a Girl Scouts' sleepaway camp. Troop 5 do a little jive!

Summer with medically complex children may never look like the picture-perfect version we see on social media. Sometimes it looks like therapy appointments before swim lessons. Medications packed next to beach towels. Medical supplies tucked beside marshmallows. Emergency plans folded into camping gear. Finding joy between appointments.

I've learned that summer isn't measured by how many vacations you take or how many camps your children attend. It's measured by the moments that remind them they are still children. That they are more than a diagnosis. That they belong. That they are loved. Because joy doesn't have to wait until life gets easier.

That joy sometimes it meets us on the archery range. Sometimes it's found while playing dress up at Ms. Janine's. Sometimes it's around a Girl Scout campfire with a troop chanting, "Troop 5, Look Alive... Everyone Will Survive... Do a Little Jive!"

The Harrity kiddos having serious fun at Disney during the Arthritis Conference in Orlando.

And sometimes it's discovered at placess like Camp Boggy Creek or medical conferences, where children with serious medical conditions aren't defined by what they can't do, but by all the incredible things they can.

Those summers may have looked different. But they were beautiful. And I wouldn't trade the lessons they taught us or the joy we found along the way for anything.

If you want to hear more about how summers are different for kids with medical issues, take a listen to Strength Happens' latest podcast: When Summer Looks Different: Finding Joy and Our Own Sense of Normalcy Raising Medically Complex Kiddos, where Janine and I have an honest conversation about raising children with medical issues and disabilities and discovering that the best summer memories often come from the moments we never planned.