The Buttie Family

Told by MarCi & Steve (parents)

Jill’s House has given us a “tribe”—a community of families who understand our world without explanation. There’s no judgment, just shared experience and support. Most importantly, Jill’s House doesn’t just care for our children—it’s like they celebrate them.

We’re Marci and Steve, parents to two incredible boys—Isaac (10) and Jacob (7). Both of our sons have complex medical needs. Isaac has Down syndrome and autism, and Jacob has Prader-Willi syndrome and autism. As we sometimes joke, our family could fill a “diagnosis bingo card”—but humor is one of the ways we keep ourselves going.

From the very beginning, our journey as parents has been intense. We knew before Isaac was born that he would have Down syndrome, but we didn’t expect how sick he would be. He spent weeks in the NICU and was so fragile that we didn’t know how long we would have him. When Jacob was born early, we faced another round of uncertainty, including hearing at one point that he might not survive.

Those early years shaped us. We quickly learned that advocacy would become a lifelong role and that “typical” parenting wasn’t our reality.

For a long time, we simply pushed through. We balanced two full-time careers, two medically complex children, endless therapies, feeding tubes, oxygen, and constant hospital visits. Life felt like survival mode. We didn’t have family nearby, and we weren’t used to asking for help. But eventually, we reached a point where something had to give. For the sake of our family, we made career changes and began to rethink how we could sustain this life long-term.

That’s when Jill’s House came into the picture. At first, we were hesitant. The idea of leaving our child—even for a weekend—was overwhelming. We worried about everything: What if they got sick? What if they couldn’t communicate their needs? What if something went wrong?

But we took a leap of faith.

That first weekend, we were on edge—but something amazing happened. We didn’t get a call. And we later learned that no news is good news.

Jill’s House is one of the greatest blessings in our lives. For our boys, it’s pure joy. Isaac loves playing basketball in the gym, and Jacob talks nonstop about Chapel, Adventure Heights, and even the elevator. They come home exhausted in the best possible way because they’ve been so engaged, so active, and so loved.

Even now, getting ready for a Jill’s House weekend takes strategy. Our boys love Jill’s House so much that we can’t even say the name out loud without them immediately getting excited and ready to go. So we’ve learned to operate a little “under the radar,” dropping off their special bed bags ahead of time, almost like a stealth mission, so they don’t spot them and start packing days early.

And for us, the impact is just as profound. It’s the ability to breathe. It’s having a conversation after church without interruption. It’s running errands together without a rigid schedule. It’s sitting in a quiet house. It’s going out to dinner for the first time in nearly a decade, even if it felt a little awkward at first.

It’s also something deeper. Jill’s House has given us a “tribe”—a community of families who understand our world without explanation. There’s no judgment, just shared experience and support. Most importantly, Jill’s House doesn’t just care for our children—it’s like they celebrate them. Every part of who our boys are feels seen, known, and loved. Jill’s House loves Isaac for Isaac, and Jacob for Jacob.

To those who support Jill’s House, please know that your generosity has a direct and tangible impact. It doesn’t just help our children—it strengthens us individually as parents and together as a couple. It gives parents like us the chance to rest, reconnect, and keep going.