Sisterhood Spotlight

Can you share about your family and your daughter, Jill?

My husband, Lon, and I are the parents of four children: James, Justin, John and Jill. We have eight grandchildren. Jill was born in 1992 with a genetic disorder called Dravet Syndrome and has profound intellectual and physical disabilities.

How did you learn of Jill’s diagnosis with Dravet Syndrome?

My family went from a mountaintop of joy and excitement when Jill was born to the lowest valley in a matter of three months, which is when Jill had her first seizure. She would seize all the time. We couldn’t sleep through the night; we had 911 calls, hospital stays and desperate searches to find any medication to make these seizures stop. A constant state of emergency marked the life of our family for many years.

Jill was 17 when she was diagnosed with Dravet Syndrome, which causes a catastrophic form of epilepsy. Our local neurologist had gone to a medical conference and met Dr. Dravet. I think that's how he learned about the syndrome. I was happy to get a diagnosis, but it’s not a good diagnosis to get. You're never going to cure it. The most you can do is semi-control it. Jill is ambulatory, she’s nonverbal, and she functions like a 24-month-old. She needs someone to care for her 24/7, and she always will.

What would you say to other Virginia families who are caring for children with intellectual disabilities?

I would personally say, “Get in community. Don’t live in isolation.” I think that’s what we’ve tried to create at Jill’s House—we’ve tried to build a community for the parents, not just the child. It’s easy to live in isolation but there’s a lot of resources in Virginia, and when you get in community with other parents, you learn what’s out there that you didn’t know about.

I’d also encourage families—regardless of their faith background is—to make sure the place of worship you choose to attend embraces children with disabilities and see them as gifts from God who are fearfully and wonderfully made. The whole family will need that encouragement and support.

What is Jill’s House?

Jill's House is a nonprofit organization that loves and serves families of children, adolescents and young adults (ages 6-22) with profound intellectual disabilities through short-term, overnight respite care and holistic family support services. Regularly throughout the year, parents send their children with disabilities to our "respite resort" in Vienna, VA, or to one of our camp locations around the country (Middleburg, VA; Chicago, IL; Nashville, TN; Seattle, WA, and northern New Jersey…with more to come!) for 24-48 hour stays. The kids get an amazing experience in a safe, fun, loving, and celebratory environment.

Meanwhile, their parents get a break. They get to sleep through the night. They get to go on a date. They get to give undivided attention to their other children. Most families take these things for granted. But for Jill's House families, these are rare and precious gifts—they're a lifeline.

We seek to love the whole family (i.e. mom, dad, kids with disabilities, and typical siblings). We do this in simple ways (e.g. gathering for a meal, book clubs, social outings, etc.) and in more "formal" ways (e.g. retreats for the whole family, retreats for moms, retreats specifically for single moms, retreats for dads, support groups, workshops for typical siblings, etc.).

At Jill's House, all families are welcome. As long as someone's child has an intellectual disability and can safely stay at Jill's House, they will be unconditionally welcomed, loved and served.

Here are a few videos that will provide a taste of the families Jill’s House serves, who Jill’s House is and what Jill’s House does.

Jill's House | Together - YouTube

The Gift of Rest - YouTube

Unwavering Strength - In Memory of Nick - YouTube

What led to the founding of Jill’s House, and what has that journey been like for your family?

About two years into Jill’s life, Jill was having one of her many seizures, and I was on the ground with her in a puddle of tears. I cried out, “Lord, don’t waste this pain. I only ask that you use Jill’s life in a mighty way.” I didn’t know what to do. Later that same day, something happened to me that had never happened to me before. This lady named Mary Doremus called out of nowhere and she said, “I don’t know why I’m calling you, but God told me to call you.” She formed a group of people around us who helped us get occasional caregivers to let us get a good night’s sleep or do something with our boys.

That was my start in learning about respite. I didn’t know how crucial rest was until I was deprived of it. Respite made a huge difference in our lives, and that is what laid the foundation for Jill’s House. We felt God calling us to do something big for other families raising kids with disabilities. We didn’t know exactly what that “big” thing was going to be, but that was the beginning of what has become Jill’s House.

Jill’s House was incorporated in 2003 and we opened our doors in 2010. It took years of believing and trusting. How would people ever understand the vision of a place like Jill’s House unless they were raising a child with disabilities? How would we get a respite center building through the zoning commission? How would we get the money to build and maintain a facility like Jill’s House? There was a lot of blood, sweat, and tears that went into making it happen.

One thing that most people don’t know is that Jill herself has never stayed at Jill’s House. We built it not to bless our own family, but as a love gift to other families. And when we built it, I always kept in mind that I wanted it to be a place that I would love to send my own children. I wanted it to be the best. I wanted them to have an indoor pool, a gym, a computer room, the best medical attention, the best caregivers. I wanted parents to know that we were going to cherish their child.

This video tells the story of the founding of Jill’s House: The Story of Jill's House - YouTube

How have you found balance and encouragement in your life as mother to Jill and co-founder and board member of a nonprofit organization?

Mary Doremus gave me hope that rest could make a difference. Mary was helping me, saying, “Jill has a purpose, you have caregivers now—use this to help other people just like yourself.” That gave me hope and energy to keep working. I get encouragement from hearing the stories of the families who are benefiting from respite at Jill’s House and knowing that Jill’s life has made a difference in this way. It was a calling and a passion and that's why I kept going.

What resources would you direct other families with children with intellectual disabilities to for support, from your own experience?

Sign up for any waivers in the state of Virginia to help you get respite hours. There are many services through these waivers that many parents don’t know about. Every child with a disability should have a caseworker, so ask your caseworker about waivers and other resources. Get your name on that list. It’s a lot of paperwork, but it’s worth it. A good place to start is by connecting with your local Community Services Board. They can point you in the right direction.

I’d also encourage anyone to check out jillshouse.org and see if this is a place that would work for your child. Look into Access Ministries at McLean Bible Church or get connected to another place of worship that will welcome you and your child.

About Brenda Solomon

Brenda Solomon is the co-founder of Jill’s House, a Christian nonprofit organization that loves and serves families of children, adolescents, and young adults by providing them with overnight respite care and holistic family support services. Brenda grew up in Hagerstown, Md., and attended Washington Bible College in Lanham, Md., where she met her husband, Lon. After she graduated with a degree in elementary education, they married. Lon and Brenda moved to Northern Virginia when Lon became the pastor of McLean Bible Church in 1981. While there, she and her husband founded Access Ministries to make their church more welcoming to people with disabilities and their families. She continues to serve as a Board Member Emeritus of Jill’s House. Brenda and Lon have four children—James, Justin, John and Jill—and eight grandchildren.