The Vargas-Portocarrero Family Story

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Told by Rita Vargas (Mom)

The Jill’s House adult program is a dream come true. Ricardo is welcomed, engaged one-on-on, and growing in independence.

I’m Rita, mom to Ricardo. He’s 37, endlessly social, and lights up whenever there’s a chance to talk, play a game, or ride a bike. Ricardo was born in Bolivia and diagnosed with Kabuki syndrome. Over the years he’s had many surgeries—cleft palate repair at birth, spinal surgery at five months old, eye procedures—and therapy after therapy. We moved to the U.S. when he was just two months old, and Fairfax County Public Schools supported him from the time he was a toddler.

Life gets so much harder when kids get out of the school system. As a young adult, for a while Ricardo was in a day program that was not good for him. He had to sit around stuffing envelopes and my heart just broke.

Things got better when we got into the Adults with Disabilities Day Program (ADDP) at McLean Bible Church. Ricardo has a girlfriend who he met there years ago. Although she moved to Florida two years ago, he visits her during his summer and winter breaks. They talk on the phone every night.

We learned about Jill’s House because Ricardo met Jill Solomon at ADDP, just a stone’s throw from Jill’s House! But Ricardo was already too old to participate in Jill’s House programs, which were serving kids up to age 21. When I heard last year that Jill’s House was starting an adult program, I couldn’t believe it. A few of us ADDP parents went to the open house, and the moment I walked in, I knew it was for Ricardo. I signed him up right away.

Now, Tuesday nights at Jill’s House are Ricardo’s favorite. He loves the individual attention, the chance to talk and play, and the warm welcome he receives at the curb. Staff run up to greet him by name, and he beams. Before I can even park the car, he’s calling out, “Bye, Mom!” and heading inside with a big smile. The Jill’s House adult program is a dream come true. Ricardo is welcomed, engaged one-on-on, and growing in independence.

Ricardo’s absolute favorite activity is riding bikes. At home, he would ride for hours in our cul-de-sac, but his bike is broken right now.  Jill’s House has the same bikes as his at home. He happily hops on their bikes and rides with joy for as long as he can. He also loves to play “game show host,” asking staff to be contestants while he quizzes them. Chloe, one of his favorite staff members, has become a real friend to him. She accompanied him at the “Night to Shine” gala, making the evening extra special.

When Jill’s House started offering adult camp sessions of Weekend Adventures, we were there for the debut! Ricardo had such a fun time at Blue Ridge in Middleburg. He found it thrilling to go horseback riding!

As a single mom, when Ricardo is at Jill’s House, I can meet a friend for dinner without worrying about being home by 8 p.m. to relieve a caregiver. I can breathe, laugh, and come back refreshed. That kind of respite keeps me going.

Jill’s House helps Ricardo grow in independence. For each visit, together we make a checklist for his overnight bag—toothbrush, clothes, all the basics—and he now packs for himself. I double-check, of course, but he’s learning to take responsibility.

Community has been another gift. Through Jill’s House moms’ dinners and Zoom meetups, I’ve connected with other parents who understand this journey. At a recent dinner, I met another mom and we started dreaming together about future housing options for our adult children.

To the staff at Jill’s House, I want to say: thank you for answering God’s call. You could be doing a thousand other things, but instead you pour out love, patience, and joy for our children. When I drop Ricardo off, I feel complete peace. That is no small gift.

 

 

 

 

 

The Schutz Family

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Told by Erica Schutz (Mom)

When the world looks at Alex, many people see his challenges first. They see brokenness. But when the team at Jill’s House looks at Alex, they see a blessing.

When I look back on our family’s journey, I can hardly believe how far we’ve come. My husband Mike and I are the proud parents of two incredible boys. Our oldest, Charlie, is a sophomore at Liberty University. Our younger son, Alex, is 17 and has been visiting Jill’s House for the past nine years.

Alex has both intellectual and physical disabilities. He is medically complex and nonverbal, and he keeps us on our toes every single day. But more than anything, he is a joy and light of my life. His smile can brighten a room and his spirit is full of love.

The early years after Alex was born were some of the hardest we’ve ever faced. We were suddenly thrust into a world we hadn’t expected: feeding tubes, daily injections, countless doctor visits, and endless therapy appointments. It felt like we were living in survival mode. We were still trying to hold onto the picture we had once imagined for our family while raising a toddler whose life—and ours—had been turned upside down.

When we finally lifted our heads from the day-to-day scramble, we realized how different our world had become. We no longer fit neatly into the communities we had known. Our life didn’t look like anyone else’s around us. It was lonely. It was isolating. We loved our son deeply, but we felt adrift.

That’s when Jill’s House stepped in. When the world looks at Alex, many people see his challenges first. They see brokenness. But when the team at Jill’s House looks at Alex, they see a blessing. Where others might see limitation, Jill’s House sees purpose—a child created in the image of God with a beautiful plan for his life.

When our family wondered where we belonged, Jill’s House welcomed us with open arms. They didn’t overlook our differences or try to smooth them away. They said, because of your differences, because of your unique needs, you belong here.

That message changed everything for us. When Alex spends a weekend at Jill’s House, I can truly rest. I know he is being treated with dignity, kindness, and love. He’s not only cared for—he’s celebrated. The staff and volunteers delight in him for exactly who he is.

From the very first visit Alex’s favorite thing at Jill’s House has been the bounce house. In fact, he loves it so much that his sign for Jill’s House is “jump.”  He also loves playing basketball in the gym and coloring with the staff in the art room.

Jill’s House has also created space for Mike and me to nurture our marriage. Their retreats for parents of children with disabilities bring us together with other couples who understand our life in a way few others can. We share our stories, laugh, pray, and find renewal.

Even our older son Charlie has found a place of belonging. At family retreats, he meets siblings who “get it,” kids who understand what it’s like to have a brother or sister with complex needs. For Charlie, it’s a gift to see other families that look like ours.

Over these seventeen years of being Alex’s mom, I’ve learned that respite is more than a physical rest—though I cherish every quiet moment. True respite is a renewal of the heart, mind, and spirit. It is the deep comfort of connection, the healing power of belonging, and the peace of knowing you are accepted just as you are.  That is the life-changing gift Jill’s House gives our family.

To everyone who supports this ministry—whether through time, prayer, or financial gifts—please know you are making a difference far beyond what words can express. Because of you, families like ours can breathe, recharge, and remember that we are not alone.

Jill’s House has given us more than weekends of care. It has given us a home in the truest sense of the word—a community where our family is seen, loved, and celebrated. For that, we are endlessly thankful.

 

 

 

 

The Mickles-Bass Family

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JoJo cries when he has to leave Jill’s House. He counts how many days he’s been away and asks when he gets to go back. That’s how much it means to him. Jill’s House is the only place I trust to care for my son without me.

My name is Teresa Mickles, and my son, JoJo—well, Rodney Jolyn Bass, but we call him JoJo at home—has been going to Jill’s House for almost 10 years. He’s 16 now, and let me tell you, Jill’s House has been one of the biggest blessings in our lives.

JoJo is a one-of-a-kind young man. He’s got a big heart and an even bigger love for Super Mario. Everything in his room is Mario-themed—slippers, comforters, clocks, dishes, you name it. He even writes letters to Nintendo requesting new Mario products, and they write him back! He’s also written to President Biden and received a response. Besides, he buys stuffed animals for his friends, writes heartfelt letters, and makes everyone feel special. In short, he just loves to love.

JoJo has been fighting since day one. He was the baby I brought home after losing his twin in the womb. At the age of two, he was diagnosed with autism and epilepsy. He also has sleep apnea, a speech disorder, and a few other conditions. However, I always say that he has joy and happiness, and that’s more powerful than any diagnosis. Despite everything, he wakes up smiling and is always laughing to himself throughout the day. Everyone knows him for his smile. From the start, doctors told me what he wouldn’t be able to do, but I chose to fight for him, and he’s proved them all wrong.

JoJo and I had never been separated until he started going to Jill’s House. As a single mom, I’ve always been protective. But from the moment JoJo walked in, I saw the way the staff welcomed him like royalty. Ms. T on staff assured me that JoJo would be in good hands with staff trained to deal with JoJo’s autistic behavior and all his diagnoses.

The Jill’s House staff treat JoJo like family, saying “JoJo! We missed you!” whenever I drop him off. When I went on their single moms’ retreat, I was treated with love and care, too. I knew in my heart that if they treat parents this well, our kids are in amazing hands. We excitedly look forward to every visit, and the annual Christmas party is a highlight of JoJo’s year.

JoJo lights up whenever he knows he’s going to Jill’s House. He pre-packs his Mario swim trunks and counts down the days. The moment we walk in, he’s off! He checks who his caregiver is, and if it’s Chloe—his favorite—he’s over the moon. After a visit to Jill’s House, JoJo usually writes letters to Chloe and other staff, and they write him back! Chloe even came to his “King-Teen” birthday party and brought a framed picture of the two of us. She always goes above and beyond.

When he’s at Jill’s House, I finally get a moment to breathe. I go to a concert or comedy show, see friends, and just rest. Jill’s House even schedules JoJo’s visits around my birthday weekend every year. That’s the kind of care and consideration they give us. Meanwhile, JoJo is having a blast. He loves to swing, draw in the art room, play basketball, ride the scooter, and sing in a chapel.

So, to any parent  nervous about leaving their child with someone else: I get it, but trust me, your child will be safe, loved, and celebrated at Jill’s House. They’ve walked with us, supported us, and truly changed our lives.

JoJo cries when he has to leave Jill’s House. He counts how many days he’s been away and asks when he gets to go back. That’s how much it means to him. Jill’s House is the only place I trust to care for my son without me.

 

 

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 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 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!