Nicole’s journey living with chronic illness highlights how family, support, and accessibility can transform everyday life. From reimagining summer days to finding joy in the small moments, her story shows how bridging gaps in care can make a real difference.
Read on to learn how Nicole balances health challenges, family connection, and the small adaptations that make life brighter.
Cherishing Simple Moments
Currently, a typical day consists of spending time at home with my son. Because heat worsens many of my symptoms, I usually stick to indoor activities and save my outdoor energy for special moments like family gatherings or watching my son’s baseball games. The most meaningful parts of my day are often the simplest—snuggling my baby niece, watching my son and nephew play, and cherishing every good day I get.
Even though these moments may seem ordinary to some, they are filled with warmth, laughter, and a sense of gratitude that makes every day feel special.
Adjusting to a New Normal
Since my health has declined, I’ve had to completely adjust from my old “norm.” I haven’t experienced a typical summer since my son was born because of my severe heat intolerance. I used to love soaking up the sun, so losing that has been difficult. But it’s also taught me to cherish the smaller moments and truly appreciate any activities I can participate in.
Each small victory or good day now feels like something to celebrate, and I’ve learned to slow down and savor the little joys that I may have once taken for granted.
Creating Special Memories in New Ways
In the past, summer meant long days outdoors—camping, going to the lake, or grilling with family. Now, I’ve had to redefine that. My son and I spend more time indoors when it’s too hot, doing things like going to the library, visiting a museum, building Lego sets, or playing games. These moments may look different, but they’re still special memories.
Even with limitations, we’ve found that creativity and flexibility can open the door to laughter, connection, and meaningful family time.
The Power of Accessibility and Speaking Up
I know how isolating it feels when illness limits what you can do. My advice is to reach out to your loved ones and suggest activities that work better for you. Sometimes people don’t realize how hard things are, so it’s important to speak up. Accessibility options can also make a huge difference—like renting a scooter or using accessible seating and parking.
One of my favorite memories with my son was going to the zoo and using a scooter; without it, I wouldn’t have been able to enjoy that day. Accommodations aren’t a weakness—they’re what allow us to keep creating joy and memories. It’s empowering to know that small adjustments can open the door to big experiences and cherished moments.
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