The Haynes Family

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Told by Sean Haynes (Dad)

We are so grateful for everyone at Jill’s House Rocky Top Camp. You can see their hearts and how much they love our kids. Everything about Jill’s House is just incredible.

Beck was around 18 months old when we first noticed a lack of eye contact, and he was only able to communicate minimally. By the time he was 3, his daycare recommended that we pursue testing. After he was evaluated, we enrolled him in early intervention services through an ABA school, where he received support for two years before starting elementary school. This early intervention set him up for success.

Beck has been attending Jill’s House for almost four years. Before that, he had never been enrolled in an overnight program. He attended a day program through our church, but it didn’t offer overnight stays. We heard from other parents in our community group that Jill’s House could be a great option for Beck, so we decided to look into it.

It’s funny—when we were asked to consider sharing our Family Story, I immediately remembered that first time we dropped off Beck like it had just happened!

I remember driving away feeling so overwhelmed and crying. My wife was working that night so I dropped off Beck alone. I don’t really know if I was crying because I was so nervous or grateful. But I remember all those emotions hitting all at once, because Beck had never been away from us!

And, if I’m honest, I never believed for a moment that he would sleep away from us. He struggled with sleep for a long period of time, and I just kept thinking, “There is no way this is going to work!” I had all the doubts in my mind!

But Beck is very trusting of us. He and I hike a lot together, and I remember one time we got lost on the trail. I kept saying, “Just one more minute, we’re almost there.” Meanwhile, he was just so trusting of me. He kept following me.

So when it was time for him to go to Jill’s House for the weekend, he was so trusting of us. He was ready to go and trusted that this was right for him. That weekend was just awesome!

Now, when Beck goes to Jill’s House we look forward to sleep, waking in the morning and lingering while we enjoy coffee and talking to one another. We usually don’t plan to do a lot over those weekends except time together.

Beck’s favorite thing about camp is the camp counselors. He has formed a special bond with some of them. While he doesn’t participate in many activities—he’s not competitive and worries about his balance—he’s not interested in the high-energy weekends, and he doesn’t like crafts. But he loves spending time with the counselors. The social interactions Beck has while he’s at camp are so good!

We are so grateful for everyone at Jill’s House Rocky Top Camp. You can see their hearts and how much they love our kids. When we arrive at camp they are waiting for Beck and openly welcome him. Allowing Beck the space for him to build relationships is incredible. Knowing that Beck is safe, incredible! Everything about Jill’s House is just incredible. But the respite is invaluable!

The Dickerson Family

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When we first moved to Virginia, we attended McLean Bible Church, which had begun to outline the vision for Jill’s House and raise funds for its construction. At that time, we hadn’t started a family yet, and we joyfully contributed to the mission, believing it would immensely help families in need. We never imagined that WE would become one of those families.

Now, we have three children aged 11 to 16 years old. Our middle son, Joshua, has been attending Jill’s House for five consecutive years.

Joshua was born on time, meeting all his growth milestones, and eating well. When he was six months old, we accepted a posting in Morocco with the U.S. Embassy, where we would see a traveling doctor for well-baby check-ups. However, when Joshua was about 16 months old, he began to regress in some of his skills, prompting the doctor to recommend that we return to the States for a medical evaluation.

Joshua and I flew back to the D.C. area for a month so he could undergo testing and evaluation. As we headed to his hearing assessment, I remember praying for a clear and manageable diagnosis. Fortunately, his hearing was excellent! Later, we learned that he was on the autism spectrum.

We returned to Morocco and received virtual play therapy for Joshua, which was our only support until we moved back to the States permanently when he was 2 ½ years old. During this time, he wasn’t speaking, but he made eye contact and loved being around people. We were uncertain about how the autism diagnosis would manifest in Joshua.

After moving to Fairfax County, we enrolled Joshua in Early Intervention, where he received substantial support. It was a wonderful experience! He even began to say a word or two.

With three children, including one with special needs, Jill’s House didn’t cross our minds during this busy period. A friend later recommended Jill’s House when Joshua was about seven years old, and we thought, “Oh yes! That’s right.” However, we were unsure if Joshua would be ready to be away from us.

We began the lengthy intake process, but the day after we visited Jill’s House, COVID-19 shut ev erything down. Fortunately, just a few months later, we completed the intake process and scheduled Joshua’s first stay.

Since then, Joshua has participated in the Weekend Program and Day Camps. He enjoys all his favorite activities, especially lounging on the big comfy couch in the Great Room! He prefers to be at the center of the action, aware of everyone coming and going. At home, he likes to be on the couch in the living room, while at Jill’s House, he prefers to relax on the couch in the Great Room.

As Joshua approaches puberty, we realize that we must be vigilant about his facial expressions, body

movements, and vocalizations. His body is changing, and he is becoming larger and more assertive, requiring us to be extra watchful. When Joshua is at Jill’s House, we can relax, and our home becomes quieter. Our other children can have friends over for sleepovers, allowing us to focus more on one another.

Joshua will likely never live independently, and his life has revolved around us. His time at Jill’s House is crucial for fostering his independence and flexibility, which are vital for his well-being and future. Additionally, it helps him manage anxiety, as he learns that he can be cared for by others.

By all accounts, Joshua enjoys his time at Jill’s House! He sees familiar faces, and they know him well. It’s really nice to be known! Jill’s House is a tremendous blessing for our entire family!

The Card Family

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Jill’s House has been our saving grace!!

McKenna, now 13 years old, has been enjoying the love and care of Jill’s House for seven wonderful years. The quarterly weekend visits, day camps, and school night program have become a cherished part of her life and ours. It’s a space that brings her immense joy and provides her with opportunities to engage in activities she loves, which can be hard to find for someone with her unique needs.

McKenna is non-ambulatory, non-verbal, and has sensory processing challenges, which make social settings particularly overwhelming for her. These challenges don’t just affect her; they ripple through our family life. Socializing, spending time with neighbors, or building new friendships often feels out of reach because McKenna can easily become overstimulated. This is why Jill’s House is such a blessing—not only for her, but for all of us. While McKenna is at Jill’s House, we savor the rare opportunity to connect as a family in ways that aren’t always possible. Whether it’s going out to dinner, catching up with friends, or planning a special sleepover for McKenna’s brother, the time is precious and deeply restorative.

Though McKenna is non-verbal, she’s incredibly expressive, and her excitement for Jill’s House is unmistakable. She literally screams with joy when it’s time to go. After each of her visits she loves sharing her Jill’s House report with her classmates at school. It’s a source of pride for her and a way to connect with her peers.

McKenna’s love for Jill’s House extends to the activities she enjoys most there. She adores the water, so pool days are always a highlight. She also thrives on movement, whether it’s swinging on the playground or exploring the indoor play spaces. Even at home, she finds joy in watching the Jill’s House YouTube channel and Instagram stories. Her smiles while watching those videos speak volumes about how much she treasures her time there.

Jill’s House is more than just a place; it’s a safe, nurturing, and comforting sanctuary that blesses our entire family. It’s a rare and invaluable resource that we don’t take for granted. The care and love McKenna receives there have made a profound difference in her life and ours. We are deeply grateful for Jill’s House and the impact it has had on our journey.

The Charles Family

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As told by Joy Charles

Jill’s House has been an integral part of our journey for many years. Knowing we have a place just for us is food for our souls!

When our boys were two and three years old, we received diagnoses that both had autism; our younger son, Teddy, also had an intellectual disability, and my husband was battling stage 4 prostate cancer. In those early years, between fighting for services for Teddy, fighting for my husband’s life, and fighting for my mental health, I felt like I couldn’t get on top of anything. Teddy would often elope, and we were always in a state of heightened alert. I didn’t feel like I could engage with the world in the same way other people did.

Teddy was in kindergarten when we learned about the disability waiver that would allow us to receive special services. I was exhausted and overwhelmed, but completed the necessary paperwork with the help of the elementary school social worker, who also told us about Jill’s House.

I cautiously approached Jill’s House. I didn’t know what to expect and was very nervous. We were blown away by the tour, but I worried about how they would keep Teddy physically safe inside. I often say that physicality is his superpower; he could escape from anywhere! I didn’t know how he could possibly be kept safe.

When we entered the pool area during our tour, I was 100% sure Teddy was going to be denied access. Before we could blink an eye, he jumped into the pool fully clothed and swam to the center. The only thought that kept circling in my mind was how this would work. To my surprise, Teddy wasn’t denied access to Jill’s House!

Before Teddy’s first weekend stay at Jill’s House, we went to the store so he could pick out his own suitcase. He chose a Pokémon suitcase, which he still uses today! While Teddy was excited, I remained anxious. At drop-off, the team reassured me that I could call anytime to check on him. Of course, I did what any parent would do, and I called in the middle of the night, asking them to check in on him to make sure he was still in his room—and breathing. They lovingly addressed my concerns, and over time, I have grown more confident that he is safe at Jill’s House. I have learned to trust them and let go, and now we all look forward to our weekends.

Jill’s House has been an integral part of our journey for many years. Teddy feels welcomed and loved, and I have formed beautiful friendships with other moms. For parents of children with special needs, we often pass each other like planets in orbit, and rarely have a chance to connect. However, Jill’s House has worked hard to foster a sense of community among us. Knowing we have a place just for us is food for our souls!

I derive immense joy from Teddy and his zest for life! Whether he is feeding the wildlife in our backyard or joyfully watching the animals play, he is a happy kid. His heart is pure, and I am so grateful to be his mom.

We lost their father, and sadly, much of my boys’ lives have been overshadowed by cancer. I now honor my husband’s legacy by advocating for my boys and other children, believing that our world is a better place because of our kids!

The Zwiebel Family

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As told by Andrew & Kate Zwiebel

Jill’s House Weekend Adventure Camp is a place where Jack can be Jack, and we are so grateful that he has a place where he is welcomed and loved!

Jack…is…awesome! He is such a good-humored, curious, and good-natured kid. He makes us laugh a lot, like when he randomly puts on his blow-up dinosaur costume! He will often play jokes on us too, like playing hide-n-seek in construction equipment while we’re on neighborhood walks.

We were married in Lake Tahoe, Nevada, while living in San Francisco, and shortly after our oldest was born, we moved to Seattle, Washington. Although the move to Seattle meant leaving family and starting a new adventure, we felt God’s presence and have continued to feel His presence throughout our family’s journey.

When I was pregnant with Jack, I remember thinking there was something different. When Jack was born, he was unable to pass the infant hearing test while in the hospital. He also had feeding and nervous system issues. We knew that early intervention was very important for Jack, so by the time he was 4 months old, he was undergoing PT, OT, and speech therapy. He also had strabismus and underwent two surgeries to correct his vision. We were hopeful that these interventions would correct his balance and motor issues, but he was still unable to hit some of his milestones.

After a few years of genetic testing and no findings, we were introduced to a new genetic test that ultimately provided us with the answers we had been searching for. Upon receiving the test results, we learned that Jack had a change on the FOXP1 gene. The way it was described to us was that this change is equivalent to having a single misspelled word in a whole set of encyclopedias. We were also told that, at that time, Jack was the only kid on record with this genetic abnormality. We were shocked! Although there was not a lot known about the FOXP1 gene, we were told that the only physician in the world studying it was located near us, at Seattle Children’s Hospital!! Talk about God’s provision for our family.

We were so encouraged and relieved to finally have some answers! We are both athletes, so when we received Jack’s diagnosis, we kept saying he was going to “Varsity FOXP1.”  Soon after, we became involved with The University of Washington’s Haring Center for Inclusive Education and early childhood intervention for children with and without disabilities— ultimately, a community of like-minded families and teachers we have grown to love. This is the community that led us to Jill’s House.

Jill’s House has allowed us to further explore the extension of a community we were already a part of, while offering safe independence for Jack through overnight camp experiences. We were pleased to know that Jack would probably attend camp with friends that he had already made through our involvement with Haring Center, but also be able to make new friends. Additionally, the religious core and mission of Jill’s House were also very important to us.

Jack has been consistently going to camp for 3 years. He loves hanging out with Jill’s House staff for the weekend, and he talks about being able to stay in his own room! At the end of a weekend at camp, he comes home tired, which means he’s also engaging in all the activities!

There are so many dimensions to camp! From archery and horseback riding to paintball and all kinds of games, there are so many great activities for the kids that are, quite frankly, hard to replicate at home. Camp provides Jack with a ton of experiences that help build his confidence and his skills—even an opportunity to show off his blow-up dinosaur costume in the camp talent show!

The first time Jack went to camp, we didn’t know what to expect or how to prepare for our weekend without him. Over time, we have realized how valuable and important respite really is, to spend time with our other children and with each other. We all look forward to those weekends now!

There have been so many God-moments throughout our journey. Jill’s House Weekend Adventure Camp is an important part of our journey and a place where Jack truly belongs.

The Adams-Nagel Family

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As told by Jan Adams

“Never will I leave you; never will I forsake you.” Hebrews 13:5

Nico was born in Guatemala and entered our family through adoption when he was 6 months old. We were excited to welcome a baby into the world, but when we couldn’t conceive a child naturally or through multiple fertility treatments, we knew that adoption would be how our family would grow. Our process of adoption from Guatemala was so uncommon and totally orchestrated by God. Our names were added to a list, and we were emailed pictures and details of children seeking a forever home. For several months we received emails from the listserv, then in March 2007, we received an email with a picture of the sweetest little one-month-old baby boy. We knew instantaneously that we wanted to meet him and bring him home! We arranged to visit Guatemala and meet him in July 2007, and he came home with us on a Medical Emergency VISA in August 2007.

Nico was very ill. He was medically fragile and needed urgent care which we located in the DC area before we brought him home. He was born with severe pulmonic stenosis and had his first surgery within days of being home. He was diagnosed with failure to thrive and had plagiocephaly which required 4 rounds of Doc Band treatments. He received OT to help with the formation and use of his mouth as well as PT due to his hypotonia.  He is on the Autism spectrum.  He has hearing loss and wears bilateral hearing aids, and significant vision loss so he wears corrective lenses. Nico has Noonan Syndrome and femoral anteversion as well.

I had to leave my career in telecommunications in 2007 because I was taking Nico to 7-9 appointments a week. I fought, and still fight for Nico to receive the best care, services, and opportunities to thrive.

Before we adopted Nico, we used to volunteer with Access Ministries (a ministry for children with special needs) at McLean Bible Church. In fact, as a volunteer at MBC, I cared for Lon and Brenda Solomon’s daughter, Jill, whom Jill’s House is named after!  We remember the years of preliminary work that were so instrumental in building Jill’s House. God was working in and through our lives in preparation for Nico, long before he was even born!

When Nico turned 6 years old, we were excited to register him at Jill’s House. With no family to help in the area and having a special needs child that made staying with a typical sitter or overnight with a friend, a non-option, Jill’s House was THE OPTION.

We met and trusted the staff so much, and I knew they would love and care for him as I did. Jill’s House was going to provide Nico with his very own experiences and opportunities. Eleven years later, we have wonderful caregivers who have been a part of Nico’s life and will never be forgotten.

Between scheduling doctors’ appointments, communications with Nico’s education team (teachers, therapists, specialists), maintaining the care schedule at home, and managing my full-time work, it is hard to relax. I am also a single mom, so there’s hardly ever a moment I am fully relaxed. But the school nights when Nico is at Jill’s House are a huge blessing! It is nice to have a break during the week when I don’t have to think about meals or the schedule, I can unwind, or work a few extra hours if I need to. Those nights are such a gift. But truly, the gift is for Nico. Where else would a kid have the opportunity to swim in an indoor pool before dinner on a school night?!

Nico thrives with a schedule and when he knows what to expect. When the Jill’s House bus arrives at school, he is excited to climb on and greet his friends, and he anticipates all the fun he’ll have when they arrive at Jill’s House. At Jill’s House, Nico gets to build relationships with kids and have fun with the staff and volunteers. Jill’s House staff and volunteers treat him like a typical child. They treat him with honor and respect, and the special child he is!

Our life is very complicated! So overnight respite is truly what I need. Jill’s House helps me to relax. There are very few places where Nico feels comfortable, safe, and loved unconditionally. Jill’s House is one that truly gives me the freedom to pause, breathe, and relax.

The Damm Family

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As told by Nadia and Joe Damm

 

Jill’s House is a gift from God. We can’t believe we get to enjoy it multiple weekends a year! We are so grateful that this is something our family can benefit from for years to come. Thank you, Jill’s House!

Before we had our children, we befriended a woman who has since become Alyssa’s volunteer Buddy at Windy City camp. This dear woman would share her experiences as a camp volunteer, and it always amazed us that people like her were willing to give up their weekends in that way! It was by God’s grace that this sweet woman entered our lives almost 16 years ago.

We have had a variety of experiences raising a daughter with Down syndrome. From doctors who didn’t see the value of life and encouraged us to terminate the pregnancy to inconsistent and challenging respite services, at times, it seemed as if the world did not want Alyssa here. At least, that’s how we felt. But we have also encountered many people who genuinely love our daughter, and Jill’s House offers that to our family!

Alyssa’s siblings have enjoyed going to camp for years, and Alyssa began asking for the same experience. We kept hearing about Jill’s House from our friend who volunteers there, and since Alyssa, at nine years old, seemed to be at the right age, we decided she was ready to go.

Though the intake process took a while, it was extremely comforting and helped in building our trust. Indeed, an immense amount of trust was required to place our child in someone else’s care. All the questions we were asked made us feel like they understood our daughter, and nothing excluded her from participating in camp. Through the whole process, I gained a new perspective on our lives and what we work through day to day with Alyssa. Although we felt reluctant about entrusting her to someone else, aware of what goes into caring for our child, every detail about Alyssa was taken into thoughtful consideration by Jill’s House, and they were excited to have her at camp.

Alyssa is adventurous and outgoing. During our Meet and Greet before her camp weekend, she toured the grounds, saw where she would sleep, explored the activity spaces, and enjoyed the outdoor activities. She was excited for camp and raring to go!

When her first Jill’s House weekend arrived, the whole family dropped Alyssa off at camp. Her brother and sister really wanted to see where Alyssa would be staying. We also decided to stay near the camp that weekend. We relaxed, lingered, and just talked. We gave one another time to share. We couldn’t believe how much we all relaxed and bonded. The weekend was amazing! Our older kids kept saying how much they needed it!

Alyssa had a fantastic time at camp, too. While she is outgoing, she still feels her way through every situation. We were so happy to learn that she enjoyed playing with her Buddy and our good friend the whole weekend! She picked up on cues that everyone there was happy to have her, and she felt safe. She was given choices, and she thrived!

At the end of the weekend, we were all so excited to be together again! Alyssa came home wanting to say grace at mealtime and share the devotionals and prayers they said at camp. We all felt refreshed and renewed; it was just the right amount to reset.

The Nelson Family

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As told by Christopher Nelson, Emily’s Dad

 

Anytime something is thrown at us or spilled on me, I stop and laugh, “Alright, God, I probably had that coming!” In some subtle way, albeit sometimes messy, it’s a reminder for me to not be angry or too serious and just enjoy life. I’m so grateful that God chose me to be Emily’s dad, and I’ll take whatever days God gives me!

Emily has her mother’s straight hair and my love for ‘80s and ‘90s music! Emily sticks close to her mom, but she knows I’m always ready for her when she is hungry for a snack or looking for some fun. If you were to drive through our neighborhood, you might catch Emily and me cruising around in our golf cart. I’m sure it’s a funny sight. This big burly guy cruising in a golf cart while Emily’s favorite song is playing over the speakers, “Girls Just Want to Have Fun,” by Cyndi Lauper. Cruising around on the golf cart while listening to her favorite music playing, with her hair blowing in the wind, is one of Emily’s favorite things.

Emily was born in March 2003 and was diagnosed with Microcephaly when she was an infant. We were told that she would be epileptic, and sure enough, she had her first seizure in 2004. She was in and out of the hospital with bad bouts of epilepsy. I wouldn’t wish that experience on any parent. You feel helpless when your child has a seizure, and you can’t do anything about it. I’m a Gulf War Vet, but those moments when Emily was experiencing a seizure were the worst moments of my life.

By 2013, when Emily was ten years old, our doctor said, “I know this is scary, Mom and Dad, but we want Emily to have an opportunity to be medication-free.” Our doctor wanted to wean Emily off the medications that were keeping her from having seizures. It was scary! But by the grace of God, she hasn’t had a seizure since then.

We found out about Jill’s House when Emily was 14 years old. She has since aged out of the program, but she was able to enjoy weekends at Jill’s House for three years. We will forever be grateful for how Jill’s House lovingly cared for our daughter. We always knew she was being cared for and in a great place! At drop-off time, we were relaxed, and she would eagerly walk into Jill’s House. At pick-up time, although she was excited to see us, she would continue to look over her shoulder as if to say, “I want to stay!” For someone who didn’t say a lot, her actions spoke volumes!

Although Emily no longer attends Jill’s House, I still connect with other dads of Jill’s House kids. The camaraderie we find in Christ and the ways we are being fortified as men and fathers mean so much!

I pray for the most fulfilled, safest life possible for Emily. She knows no hatred. She knows no fear. Other than the fear of not having enough french fries. She loves french fries! But I wish people could live like her. What gets me is that God chose me to be her dad! Anytime something is thrown at us or spilled on me, I stop and laugh, “Alright, God, I probably had that coming!” In some subtle way, albeit sometimes messy, it’s a reminder for me to not be angry or too serious and just enjoy life. I’m so grateful that God chose me to be Emily’s dad, and I’ll take whatever days God gives me!

The Levine Family

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As told by Pam and Jesse Levine

 

To have Jill’s House available when before you had nothing, and then to have people who are so empathetic and gentle with your child. . . you can’t ask for anything more!

We always knew that we would adopt a child. Even when we were young and dating, we talked about adoption. We brought our first daughter home from China and quickly pursued adopting another girl so that the girls would each have a sister. Then after a couple of years, we adopted Jax!

We adopted Jax when he was three years old. We knew it would take some time for him to become acclimated to our family and to America. He had been in a Chinese orphanage for the first three years of his life. We noticed some developmental delays, but over time, we realized that there was more going on than just difficulty in adjusting to life with us. Originally, he was diagnosed with ADHD. Then after displaying further signs of delay, he received an intellectual disability diagnosis when he was about five years old.

As a family, we say, “Everything is figure-out-able.” We have moved a lot; we have faced frequent health concerns. We have received unexpected diagnoses, but we have always been able to figure it all out. We knew that no matter what we were facing with Jax, that we would be able to figure it out together!

Over the years we have had attendants to help with Jax after school, or for a few hours on a weekend, but we never had a full weekend of help or respite. As Jax grew older and we experienced new challenges, we also began to grow weary of finding relationships and activities for him to gain independence and help develop his social skills. One day, my husband did a Google search and discovered Jill’s House! We’ve never lived near family, and we always felt nervous about leaving the kids with anyone. But Jax would hear other kids talk about overnight sleepovers at a friend’s house, and he would ask if he could have those same experiences.

We decided to complete the paperwork for Jill’s House. Before Jax had his first overnight there, we were invited to the Jill’s House Family Christmas Party. We were able to see other families, and I was able to meet other Jill’s House moms. I enjoyed chatting with them and felt comfortable asking my burning question, which was, “Is it really safe there?” I wasn’t sure if Jax could verbalize if things weren’t right, and I was nervous. The moms understood my concerns without judgement and plainly said, “We’ve been here for 12 years, and it’s the safest place for our kids!” These moms explained that there are so many eyes on the kids while they are at Jill’s House, between the nurses and the program staff, and that it is just as safe as my own home!

Jax finally had his first weekend at Jill’s House in January. We were so nervous! We let him take his phone so he could text us at any time. The first night, he sent us a text saying, “Good night. I love Jill’s House!” We were so excited. The next day, he ignored us! We sent him a text in the morning, and again in the afternoon, but we never heard back from him. We decided to call later that afternoon just to see if he was okay and ask if his phone had been taken away. The supervisor shared that Jax was having a great time. He was busy, engaged in fun activities and was doing great! We were relieved, and we were finally able to fully relax! Now, when we drop him off, he barely says goodbye before jumping out of the car.

We attended the Family Retreat and had such a great time! Seeing the other Jill’s House families and knowing that, even though our families are all different, we all face some of the same things, was awesome! We were able to connect with other parents and get to know the staff even better. Jax also had such a great time with the staff. He really loves them!

Jax is going to high school next year and is very excited. He is part of a teen boy’s group with Boys and Girls Club of America, but he says his favorite activity is going to Jill’s House, where he feels so loved and welcomed! To have Jill’s House available when before you had nothing, and then to have people who are so empathetic and gentle with your child. . . you can’t ask for anything more.

 

The Butler Family

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As told by Maura and Christopher Butler

 

Life can get messy, full, and tough, but at Jill’s House, we can rest assured our special kids are treated with dignity, respect, and love. This blesses our whole family. It is incredible!

When Dorothy was born, we weren’t aware she would have special needs, but my maternal instincts were telling me that something was different. When she was about six months old and not able to sit up, I brought my concerns to our pediatrician. I was encouraged not to worry and was told that each child develops at a different pace. But when Dorothy was almost one year old and only barely able to sit but certainly not crawl, I became her advocate. I educated myself about terms such as “low muscle tone,” “occupational therapy,” and “speech therapy.” I had never heard of a developmental pediatrician but learned and then fought for her to be seen by one.

As grateful as we were to be on a path with both a new pediatrician who listened to my concerns and a developmental pediatrician, we still didn’t have a diagnosis for Dorothy. She was receiving medical care, multiple therapies, and undergoing dozens of tests, and we discussed a variety of treatment options, but there was no clear diagnosis. I continued to advocate for Dorothy through this difficult season. (I’ve never really stopped.) I trusted that the Lord was in control and certainly grew in faith without knowing what Dorothy’s diagnosis was. Abandoning my earthly desires “to know” was not a one-time act of will; it was put on repeat.

When Dorothy was nine years old, we were finally able to understand the unique way in which God had knit Dorothy together. Through genetic testing, we discovered that Dorothy has Mowat–Wilson syndrome, a rare genetic condition with only a few hundred known cases worldwide. The moment I was told her diagnosis, I was overcome with joy. We couldn’t help but praise God. Our joy might not have made sense to our medical team, but we had been searching for answers for nine years, and in a way, I felt like God had blessed us for our faithfulness.

God made Dorothy intentionally and on purpose, without mistakes or hiccups. Dorothy has a role to play in salvation history that only she can fulfill, and Mowat–Wilson syndrome is part of that story.

Jill’s House is also part of the story!

We found out about Jill’s House from a family at Dorothy’s elementary school. We didn’t have support or family nearby, and we were tired. I remember freaking out during her first weekend overnight stay. I called many times, and I kept thinking, “Who needs respite from her own child?!” A woman I didn’t know very well (we have since become friends) had come to our home for a mom’s group that weekend, and she helped me understand that my children, including Dorothy, needed respite, too. Dorothy needing respite from us hadn’t crossed my mind. When I began to consider how Jill’s House was providing a time of respite for our whole family, it radically changed my perspective.

While Dorothy is at Jill’s House, we plan activities our other five children do not get to do otherwise. Our kids don’t feel that Dorothy needs to be somewhere else so they can have a good time. On the contrary, they feel free to have fun because they know she is having a blast at Jill’s House! Dorothy is so happy at Jill’s House; she wants to go there, she has friends there, and she gets to do things she loves with wonderful people.

The constant vigilance one must have on a child with special needs gets exhausting, not in an exasperating way, but mentally and physically exhausting. While Dorothy is at Jill’s House, though we may be involved in busy activities, I feel relaxed. That is what respite is! Several years ago, I sat on a panel discussion with other Jill’s House moms, and I remember all of us shared that other than Jill’s House, we had nowhere else for respite. I am so grateful for the impact Jill’s House has had on so many families!