The Buttie Family

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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.

 

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Your generous gift of any amount helps bring joyful adventures to special needs kids, rest and support for parents, and renewal for entire families.

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The Green Family

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Told by Kara (Mom)

I expected Jill’s House to give me rest. What I didn’t expect was that it would become my son’s favorite place in the world.

Life has a way of taking unexpected turns.

I’m Kara, a single mom to two incredible kids: Eva, 15, who is a driven, compassionate big sister, and Johnny, 13, who is quite simply the center of our universe. Johnny is funny, loving, endlessly energetic, and almost always dressed in orange, his signature color. Around our house, we joke that it’s Johnny’s world and the rest of us just live in it—and, honestly, that’s pretty accurate.

When Johnny was two and a half, everything changed. He suffered a traumatic brain injury. In those first terrifying moments, I was just grateful he survived. What followed was something doctors still can’t fully explain. Johnny’s recovery—his resilience, his progress, and his very presence—is nothing short of miraculous. Still, we were told he would never develop beyond the level of a nine-year-old and would always require full-time care—my full-time care.

The dreams I once had for my life shifted overnight. I had once imagined becoming the first female president of the United States. Now, my world revolved around doctor’s appointments, therapies, IEP meetings, and constant vigilance. Every day starts early and moves quickly. There are good days and very hard days. As Johnny grew, the weight of doing everything alone became overwhelming. I couldn’t take my eyes off him, not even long enough to take a shower.

During one particularly long, exhausting weekend, I found myself searching online late at night, unsure of what I was even looking for—just hoping there might be something, anything, that could help.

That’s when I found Jill’s House.

Even though I desperately needed rest, the thought of leaving Johnny somewhere was terrifying. Would anyone else know how to care for him? Would they see only his challenges, or would they recognize the abundant love and joy in his heart?

But Jill’s House is different. Every single person there loves him exactly as he is. They truly see him and delight in him. Much of Johnny’s life is spent in environments focused on his progress—school, occupational therapy, feeding therapy, and behavior therapy—but at Jill’s House, they meet him right where he is and love him fully in that space.

While at Jill ’s House, Johnny’s first stop is always the playground. He loves riding the bikes and setting up races and “parades” with as many people as he can gather.

I expected Jill’s House to give me rest. What I didn’t expect was that it would become my son’s favorite place in the world. Johnny was once asked if he’d rather go to Disney World or Jill’s House, and he chose Jill’s House. This is a child who dressed as Mickey Mouse for twelve straight Halloweens. When I pick Johnny up after a Jill’s House stay, he asks if he can stay for 100 days.

Johnny doesn’t get invited to birthday parties or sleepovers. Jill’s House is his place to belong, to be celebrated, and to have fun.

For Eva and me, Jill’s House offers something equally meaningful: time—time to reconnect, talk, attend her field hockey games uninterrupted, and simply be mother and daughter. With her approaching college, that time feels priceless.

Jill’s House has also provided me with community. Through parent support groups and retreats, I’ve found friends who understand without explanation—people who celebrate small victories and share in difficult moments. They’ve become our people, our family.

Jill’s House has been part of our lives for six years now, and I truly can’t imagine life without it. To everyone who supports Jill’s House: please know that you are uplifting entire families—families like mine. For that, I am endlessly grateful.

 

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The Escoto Family Story

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Told by Lisa (Mom)

Jill’s House gave us something we’d never had before:  rest and trust. For the first time, I knew [Elena] was completely safe and surrounded by people who celebrated her, who saw her light. I could finally exhale.

My daughter, Elena, can best be described as joyful. She wants to connect with everybody. She has a bright light in her, but not everyone sees that.

Elena has Angelman syndrome, which affects her mobility, communication, and sleep. In the early years, she slept only three hours a night. And so did I. Life felt like survival mode.

When Elena was six, other parents encouraged me to let her go to Jill’s House for her first overnight. I was terrified. How could I trust anyone else with her care? But they said, “She’ll love it, and you need the break.” They were right.

Jill’s House gave us something we’d never had before: rest and trust. For the first time, I knew she was completely safe and surrounded by people who celebrated her, who saw her light. I could finally exhale.

I used to call Jill’s House midway through the weekend, on Saturday afternoons, just to check in. The staff would say, “Hold on,” walk up to her, and hold up the phone. I’d hear her squealing and laughing in the background. Then they’d say, “She’s got the biggest smile on her face, and she’s having a great time.” Hearing her joy in real time meant everything to me.

Elena loved her weekends at Jill’s House in Tysons and later experienced camp weekends at Blue Ridge, where she thrived being outdoors. Blue Ridge was her happy place—smaller, quieter, and full of exciting experiences like hayrides and visits from therapy dogs. She especially loved seeing the horses (from a safe distance—they’re a little too big for her taste!) and spending time with staff who shared her excitement and energy. She felt completely at home there.

I loved the reports I’d get after each Jill’s House visit. They always began with“We love Elena because…,” followed by all the wonderful things about her. When you spend years hearing what your child needs to work on, hearing what others love about them means everything. At Jill’s House, no one told her to calm down or be different. They simply delighted in who she is.

When Elena was away on weekends, I finally had space to breathe. On Friday nights, I’d pick up takeout for me and my older daughter, Sofia, and put on a movie that we could watch, uninterrupted, in peace. For years, after Sofia went to bed, I’d end up crying until Saturday afternoon—all the emotions I’d been pushing down finally had room to surface. (Sofia would sleep in, on teenager time!). For the rest of the weekend, I would read, sleep, and enjoy one-on-one time with Sofia and with friends. Little by little, I began to feel like myself again. Jill’s House gave me that space to process and heal.

That’s what makes Jill’s House different. They don’t just meet needs; they see the whole person. Raising a child with special needs can be isolating. The world doesn’t see the unique stressors, the constant logistics, and the exhaustion. Even when people try to help, they can’t fully understand unless they’ve lived it. That’s why Jill’s House—and the community I’ve found here—means so much to me.

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 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!

The Sullivan Family

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Told by Sarah Sullivan

When our first child was born, we were living in California. Shortly after she was born, I stopped working, and we decided to move into my parent’s home in Illinois. We had planned to stay with them for a short time, so we could save some money. But then Kate was born, and our plans changed.

When I was pregnant with Kate, we decided not to do any prenatal testing but we had ultrasounds throughout the pregnancy. I remember during one ultrasound the lab technician took extra time looking at the space where her heart was, but we were not told about any problems. Kate was born with two holes in her heart and she was also diagnosed with Down syndrome. She had to undergo open-heart surgery when she was just three months old; then a pacemaker had to be put in, as some complications occurred because of the surgery. She was in the hospital for two weeks! Gratefully, we were with my parents during that time as they helped with taking care of our older daughter. God knew what we needed when He moved us to Illinois!

I had studied early child development before our first child was born and worked with kids with special needs—even those with Down syndrome, but we didn’t know what Kate’s diagnosis would mean for her or our family. Looking back, I believe God was preparing me for Kate, and I think God knew that I needed to see her and hold her in my arms before we received the diagnosis.

Those first few years of her life were filled with so many visits to doctors. At one point, she had eight different doctors! She is quite healthy now and doing very well.

In Illinois, Kate was involved in a program for children with Down syndrome, where she received most of her early support. The program was so wonderful and it offered profound encouragement to her and our family! I remember thinking about how much we were going to miss the program when we moved to Virginia after a few years. But then when we moved to Virginia, we found Jill’s House!

When I first learned about Jill’s House, I visited their website and read Brenda’s testimony there. I remember being so touched by her words! In her testimony, Brenda shared about their busy life with their older boys, and when Jill was born and later developed very special needs, she felt she couldn’t leave Jill’s side. They were all in desperate need of rest, but Brenda prayed that God would use Jill’s life for a greater purpose. When I read her words, all I could think was that when Jill was born, God was also thinking about Kate, our family, and all the other families that are being served by Jill’s House today. God is sovereign over all, and I’m so thankful to Lon and Brenda for their faithfulness in trusting The Lord with Jill’s life.

God IS good, and He has a plan! Life can be hard, and we don’t always understand what is happening, but when you step back and trust that He is faithful, you can see that He is working. Brenda’s words really touched my heart and helped me to trust that God is working in our lives too.

Kate started going to Jill’s House when she turned six years old and has been going there for the last 10 years. When she was younger, Kate was quite active. So, we found it hard to do our daily chores or even take her to the park. We would often avoid engaging in certain outings as a family because it was such a challenge. Kate is 16 years old now and full of life! She has a wonderful sense of humor, and she loves her family. She enjoys going out to eat, playing basketball, and putting on dance shows (for us) at home and Jill’s House.

Kids with special needs might be overwhelming or intimidating to some people. But everyone at Jill’s House sees these kids for who they are. God doesn’t make mistakes, and He has a plan for every single person on this planet. Everyone at Jill’s House seems to know that; they embrace that, and they love and serve our kids and families so beautifully! Also, from a practical standpoint, we can truly rest knowing that while Kate is in Jill’s House, there are on-duty nurses and excellent staff to tend to her medical needs and any situation that may arise. Everything about Jill’s House is such a blessing to our family!