The daily experience of raising a child with disabilities is impossible to fully grasp unless you’ve lived it.

“I thought I would never smile again because I had a daughter that was hurting so much,” said Brenda Solomon, recalling the devastation she felt when her daughter Jill began having seizures at just three months old. “My husband used to say that it sucked the laughter out of our family.”

For Erica and Mike Schutz, exhaustion has been a constant presence for 16 years. “There’s a weariness that never goes away,” said Mike. Their son, Alex, has a rare genetic disorder that weakens his immune system and causes physical and intellectual delays. 

“For me, it’s always his health,” Erica explained. “We’ve almost lost him three times. I’m constantly thinking, ‘Am I watching him? Am I catching something? Is this an illness?’ It keeps me in survival mode and stress that has not changed since he was little.”

Despite the immense challenges, families like the Solomons and Schutzs will tell you their lives are not defined solely by hardship. There is also deep love, resilience, and joy. 

“We celebrate Alex all day, every day,” said Erica. “He’s the happiest person we’ve ever met. I want him to know how special he is. I want him to know how proud we are of him. I want him to have a life that he wants to have.”

Brenda understands this balance of struggle and love all too well. As she navigated life with Jill, she often wondered how other parents managed. “My biggest question as we were living through the crisis was, ‘How are other people making it? Are they a hot mess like I am?’” she recalled.

Those questions led Brenda and her husband, Lon, to create Jill’s House — a nonprofit dedicated to loving and serving families raising children with intellectual disabilities. 

Jill’s House provides a one-of-a-kind experience for children with intellectual disabilities, offering joyful and enriching 24- to 48-hour stays in a nurturing environment designed just for them. With a focus on welcoming and celebrating each child — not in spite of who they are but precisely because of who they are — Jill’s House provides engaging games and activities tailored to their abilities and interests. Meanwhile, parents and siblings can rest, recharge, and deepen their family connections, knowing their loved one is in a place filled with care and joy.

Throughout the year, parents send their children with disabilities to the main campus — some call it a “respite resort” — near Washington, D.C. By collaborating with camps nationwide, the nonprofit extends its respite experience to children with intellectual disabilities across the country.

Jill’s House seeks to nourish the whole family — parents, children with disabilities, and their typical siblings — including support groups, social outings for parents, activities and workshops for siblings, and retreats for the whole family. Through these efforts, the organization fosters connections among families that share similar experiences, ensuring they feel wanted, seen, and heard in a loving community.

The journey to building this refuge wasn’t easy — but for the families it serves, the impact is undeniable.

How Jill’s seizures reshaped the Solomons’ family life

The first few years of Jill’s life were a blur of medical emergencies. Paramedics and hospital staff became a regular presence in the Solomons’ home as Jill’s seizures worsened. Soon, she was experiencing as many as six or seven a day.

“We kept changing medicines, and nothing — absolutely nothing — was stopping these seizures,” Brenda recalled. “That was the moment I realized: If these neurologists don’t find the right medicine, this is going to damage her brain.”

The relentless medical crises reshaped the Solomons’ entire family dynamic. Jill’s three brothers, all significantly older than her, had grown up in a lively, social household filled with activities. But as Jill’s condition worsened, everything changed.

“We had been very involved parents,” Brenda said. “We had sports, music, church events, school events — we were carpooling them everywhere. I loved it. But that all stopped. My husband and I both lost the ability to be present for our other kids.”

More than two years in, after yet another sleepless night caring for Jill, Brenda reached her breaking point. “I cried out to God,” she recalled. “I said, ‘God, you’ve got to step in and do something. I have nothing left — physically, emotionally, spiritually. Please, just use Jill’s life in a mighty way. Don’t waste this pain. It hurts too much.’”

Later that day, an unexpected phone call changed everything. A woman from church — someone Brenda barely knew — reached out and asked how she was doing. That simple question broke through the isolation she hadn’t realized was consuming her. They talked for two hours.

By the end of the conversation, the woman, Mary, introduced Brenda to the concept of respite care — the idea that it was not only OK but necessary to let others step in and care for Jill so that she and Lon could rest.

Mary didn’t stop there. She organized a group from their church to help care for Jill on occasion, giving the Solomons their first real moments of relief in years.

“It made such a difference in our lives,” Brenda said. “Just getting sleep changed everything. It was such an eye-opener — when you get rest, you can make decisions for your child. You can think clearly, especially when you’re making critical medical decisions every day. And most importantly, it gives you hope.”

Why it’s hard to let others step in

These families love their children deeply, unconditionally, and with a fierceness that words can hardly capture. The exhaustion, the challenges, the heartache — none of it diminishes the love they feel. If anything, it strengthens it.

“One of the things we’ve loved about life with Alex — as much as it can sometimes feel like a burden — is that we’ve never been able to take anything for granted with him,” said Mike.

Caring for Alex is a full-time commitment. He wakes up as many as four times a night, and his parents consider it a good night if he sleeps until 4:30 a.m. Mornings are a team effort: Erica gets him up and spends time with him, then Mike steps in to dress him while Erica catches a bit more sleep. Afterward, Erica prepares his things for school — packing his backpack and food before walking him to the bus stop. After school, they continue to take turns.

As exhausting as it may seem, it’s sometimes difficult to let anyone else take over, even briefly. No one knows Alex like his parents do, and for years, trusting someone else to care for him felt impossible.

When they first heard about Jill’s House, it sounded promising, but they weren’t expecting much. “We thought, ‘There’s no way we could leave Alex anywhere,’” Mike recalled. “Even our family doesn’t always get it right. It takes living it to truly understand how to care for him.”

But when they walked into Jill’s House for the first time, they were stunned. It didn’t look anything like the medical facility they had imagined. Instead, it felt like a cozy lodge, with a warm fire in the middle of the common room. They felt like they belonged there.

“We could tell that they viewed Alex and children with special needs as gifts, as people to be celebrated and loved in every single way,” said Erica.

Even the registration paperwork brought them joy. “It was all about things like, ‘What does he love? What does he need when he’s sad? What brings him comfort? What brings him joy? What does he like at night if he’s afraid?’” Erica said. “They asked about everything. Considering Alex can’t speak, it meant so much that they cared to ask those questions.”

His first weekend there was transformative for Alex, his parents, and his brother Charlie. While Alex was at Jill’s House, Erica and Mike focused entirely on Charlie — doing things they couldn’t do with Alex, like going to a loud restaurant, staying out late for a movie, and even sleeping in. Though Erica called to check on Alex countless times, the staff reassured her that he was doing great.

“I couldn’t believe how rested I was,” she said. “When we went to pick him up, he was so happy. He came out dancing and clapping, with a group of staff cheering his name. It was so wonderful to see him experience that sense of belonging and joy and to know he was thriving without us there.”

Alex has been going to Jill’s House four times a year since he was 8. During the summers, he spends several weeks at day camp, and he loves it. He enjoys playing in the bounce house, swimming, and making new friends. For him, it’s a relief to be in a place designed to meet his needs. Using his communication device, he tells his parents he wants to go to “my place.” 

What matters most to the Schutz family is that Alex has fun and feels at home there — and because of that, they no longer feel guilty about leaving him.

“As long as a child with a disability is having a great time with us, it’s a positive experience for the whole family,” said Joel Dillon, president and CEO of Jill’s House. “It’s not like they’re being sent somewhere they don’t want to be for the weekend. It’s more like they’re going to Disney World, having new experiences, making new friends, and being surrounded by people who love them.” 

“There’s a lot we can’t control,” he continued. “We can’t take away all the mental anguish — but we know we can ease their stress. That relief has powerful ripple effects, impacting every part of their lives and strengthening the whole family.”

‘Who could even begin to grasp this?’

Life for the Schutz family became so focused on caring for Alex that they found themselves isolated from the outside world. This is common for many families caring for children with intellectual disabilities.

“You think, ‘Who’s going to understand what I’m going through? Who could even begin to grasp this?’” Brenda said.

“I didn’t realize how isolated we were,” Erica explained. “It was true for Charlie, too. Just seeing other families like ours and having someone recognize how special needs have touched his life — I think Charlie really needed that.”

Joel pointed out that society isn’t designed for people with disabilities and their families, not just in terms of physical barriers but social ones as well.

“These kids don’t get invited to birthday parties or sleepovers,” he said. “Maybe it’s too hard to bring your family to church, or you don’t have time to take your kids to youth groups. Invitations to go on vacations with friends or family might not come as often. All these things add up to a lot of social isolation.”

For years, the Schutz family hesitated to join any disability community. The support groups they attended often felt discouraging, focusing on the challenges of caregiving and obstacles to accessing services. Instead of feeling uplifted or supported, they left disheartened and frustrated. More importantly, these groups weren’t meeting the Schutzs’ deeper needs — for hope, connection, and a space that recognized the joys of caring for Alex, not just the hardships.

But the families they meet at Jill’s House retreats are different. “The purpose is to celebrate these kids,” said Erica. “It’s about coming together and giving support through hard things while we raise special kids.”

“Jill’s House has shown us that we can live a life that’s not all about special needs,” Mike added. “Special needs are part of our life, but the focus is on appreciating and adoring our children — not in spite of their needs but almost because of them.”

A father once told Joel, “I’ve never seen anybody who loves my child the same way I do.”

“Our core belief is that every human being is created in the image of God and has eternal value,” Joel explained. “You can’t do anything to diminish that. You can’t add to it, and you can’t take away from it. That belief, plus our love for these kids, translates into an atmosphere where it’s not just about how hard everything is. It’s about love and fun and celebration — all those good things.”

Brenda acknowledged that she never fully grasped the challenges faced by families raising children with intellectual disabilities until she experienced them firsthand. She and her husband channeled their journey into creating Jill’s House.

“I needed a Jill in my life,” she said. “Jill opened my eyes and my heart to another community that so needed my help. I love my healthy children, but I love Jill just as much. I told my husband early on that I knew what I was supposed to do. I told him, ‘I’m going to fight for respite and services for these families because I don’t know how they’re making it.’”

Jill’s House is supported by Stand Together Foundation, which empowers individuals to reach their full potential through community-driven change.

Learn more about Stand Together’s efforts to build strong and safe communities and explore ways you can partner with us.