The Washington, D.C. suburb of McLean, Virginia is one of the most affluent areas in the United States. It is also a community of rare and remarkable power, where politics, military might, and corporate interests converge to create the perfect environment for successful non-profit efforts.

On any given day of the week, there is a charity ball or fundraiser for one cause or the other, each tapping into the deep pockets of a community that has more than its share to give. Unfortunately, however, the needs of children with special needs have been largely overlooked in a town that has served as an incubator for some of the nation’s greatest grassroots organizations. In a town bursting with wealth and success, more than 40,000 children with disabilities and their families have been left behind.

I know; we are one of those families.

Before the birth of my fourth child and only daughter, Jill, I could never have known the incredible difficulties faced by families when a child with special needs is born. Like most mothers of typically developing children, I was grateful that my boys were healthy, and I never considered for a moment what it would be like if they were not. I never knew that as many as 80 percent of the marriages in such families fail. I never knew the financial burdens created when medical insurance doesn’t begin to dent the doctors’ bills or how cruel the stares of even well intentioned people can be. I never knew about the bone-numbing exhaustion that sets in after years of caring for someone with chronic illness.

For the first three months of her life, Jill was a normal, healthy baby. But soon after, she began developing seizures, which started with a small twitching in her arm and eventually evolved into full-body, grand mal convulsions. By the time Jill was a year old, she was having multiple seizures daily.

In those early days, the rescue squad arrived at our house so many times we knew the paramedics by name. They’d race in, insert a Valium drip into Jill’s arm and rush her to the emergency room. I had assumed the burden of this crisis was one that my family had to bear alone. What could anyone else do? My husband, who is the senior pastor of McLean Bible Church, would kneel with me beside our baby girl and pray to God for help, but we never knew exactly what sort of help could possibly relieve our family’s pain. I simply knew I was broken.

On Jill’s first Thanksgiving in 1992, she has 19 grand mal seizures and ended up in the pediatric intensive care unit for the holiday weekend. Fearful of giving my family false hope, the doctors predicted that the seizures would cause her mental development to never exceed that of a two-year-old and her life expectancy to be even shorter. Years later, she would be diagnosed with mitochondrial disease, a genetic problem that keeps the body from producing enough energy to meet its needs, one of the major symptoms of which is massive numbers of seizures. Thankfully, Jill outlived their predictions and is now 15. But they were correct about the seizures and about the severe mental retardation she would develop. We didn’t sleep through the night for the first eight years of her life.

I began to do what so many mothers do – lose myself in the fight to save my child. I was, I know now, winning the battle and losing the war. I no longer had interests or hobbies or time alone with my husband. I barely had time for my three boys as the inexhaustible need to care for Jill consumed every waking minute. The guilt I felt from neglecting our boys was unbearable at times. I felt like I was trapped at the bottom of a big black hole, without the energy or the ability to climb out.

But an answer to our prayers came when friends showed up at our door with an offer to help. Their selfless gift, we came to know, was respite. The rest provided through respite became the break and opportunity we needed to recapture some of what we sacrificed through our care for Jill.

One of my friends told me: “Jill is not going through this for nothing. God will use it, and his pain will not be in vain.”

I eventually came to believe that she was right. The generosity of our friends grew into a respite care ministry at our church, where we now serve more than 500 children with special needs. This ministry is our gift to the community. It is our way of helping to save marriages at stake, the siblings on the sidelines, and the children themselves as we care for them in our programs. The families come from all around the Washington area and from all walks of life. We’re proud of the services we office, of the two-to-one ratio for children made possible by an amazing team of volunteers; we are pleased with the visitors we get from churches all over the country looking to replicate our program. But our humble operation, now in its tenth year, is not nearly enough to help the thousands of children with disabilities in our area.

We have bigger dreams. Our goal is to build Jill’s House – a respite center on five acres of land on our church property. Our vision includes a day program, therapy services, and overnight accommodations in a safe place for children, like Jill, and their families. In addition to respite, we hope to eventually become a hub for the many services families need but can’t find for their children – everything from hair stylists trained to serve children with special needs to dentists, therapists, caregivers, tutors, and coaches. The center will offer affordable care to all children, no matter what their religion or background, and it is our hope that Jill’s House in McLean will become a model for centers across the country.

Like so many other obstacles confronting children with special needs, the path to Jill’s House is long, tiresome, and difficult. It is a battle of education, of resources, and of determination. But it is a journey well worth taking.

Determination is a word that has taken on new meaning in our family’s life, and as I see Jill fight through her seizures and my family fight through impossible odds, I am convinced that the dream of Jill’s House is possible. I cannot wait for the day that children with special needs play and learn at Jill’s House. I cannot wait to see the look of rest on the faces of parents able to take a break from the intense demands of their everyday life. And I cannot wait until I hold my precious daughter in my arms and point to the house that declares her suffering has not been in vain.

For more information or to help Jill’s House: www.JillsHouse.org, 703-584-7255, info@jillshouse.org, PO Box 9104, McLean, VA 22102. Brenda Solomon is president of Jill’s House and the mother of four beautiful children.

Published with the expressed consent and approval of Exceptional Parent, a monthly magazine for parents and families of children with disabilities and special health needs. Subscription cost is $39.95 per year for 12 issues. Call (877) 372-7368. Offices at 416 Main Street, Johnstown, PA 15901