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!

The Mann Family

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Told by Lauren and Adam Mann

We met in high school at Bishop O’Connell in Arlington, VA. Although we attended separate colleges, we returned home after graduation, got married, and quickly welcomed Isaac into our family. Isaac is our firstborn, and he has three siblings. Family is very important to us! Our extended family lives in Northern Virginia. Our kids are growing up with multiple generations and get to spend a lot of time with the family and church. We believe this is also valuable for Isaac!

Isaac was a preemie and had an extensive hospital stay at the time of his birth. We found out that Isaac had a heart defect when I was pregnant, so he had to undergo surgery soon after he was born. When he was about two weeks old, we learned that he had a genetic condition, among many other diagnoses. However, we were told that its significance was unknown, so we focused on other areas of Isaac’s body that had greater, more life-threatening needs.

As Isaac grew older, he missed milestones such as crawling and walking. Initially, doctors told us that this was because he was a preemie. We were hopeful that he would catch up, but he continued to fall further behind. Isaac was one-and-a-half years old when our second child was born. As his sister grew, it became more apparent to us how delayed Isaac was. Finally, when Isaac was two years old, we saw a geneticist.

The geneticist ran tests and tried to assure us by saying that everyone has some degree of abnormality. What we were facing with Isaac could be nothing. We learned that Isaac has 4Q Chromosome Deletion Syndrome. It is estimated that only one in 100,000 children are affected by this syndrome. The amount of genetic information he is missing is minuscule, and the geneticist explained that the amount of information Isaac is missing in his genetic DNA is equivalent to a single page of a 3,000-page book. However, he was not sure how this would affect Isaac because what genes are missing in our DNA is of greater concern than the number of genes missing. This has turned out to be very significant for Isaac. He has relatively severe issues with the amount of genetic information he is missing.

He has been through many diagnoses over the years. So, it is hard to figure out what to attribute to the genetic condition and what could be related to the other diagnoses. Thankfully, a parent support group of other 4Q Chromosome Deletion kids has been very helpful to us in navigating through this relatively unknown journey. Jill’s House has also been a tremendous lifeline, providing a space for us to pause and take a breath.

We are both nurses at Children’s National in DC, which is where we learned about Jill’s House. The thought of sending Isaac to overnight respite care scared us because he can’t talk at all. We know what Isaac needs; but sometimes, even close family members have difficulty meeting his needs. However, when a coworker who also happens to work at Jill’s House shared how much she valued and trusted the organization’s mission, we decided to initiate the intake process.

He has done a few overnight stays, our other kids have attended the typically abled siblings’ night, and we have enjoyed a few mom-and-dad gatherings. The Jill’s House community seems really strong and close-knit! There are so many outreach programs for everyone in the family. We are excited to continue with Jill’s House!

The first time Isaac stayed at Jill’s House, we called a few times and were told that he was having so much fun. When it was time to pick him up, it was hard to get him into the car to go home! The joy on his face was so encouraging for us! For a long time afterward, Isaac used his communication device to say “House! House! House!”. So we knew he thought about Jill’s House often, and he now has his own “Jill’s House” button.

When you first look at respite care, there can be a little bit of guilt. But it’s nice to know that we can do something with our other children, or something for the two of us, and Isaac will also be having a good time with people we trust.

We are just so grateful for Jill’s House!

The Yao Family

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by Qin Li

We are a family of five—our oldest is a senior in high school and is processing his college admission; our youngest is in 6th grade; and Michelle, who goes by Mimi, is 14 years old and a regular at Jill’s House!

Mimi does not regularly interact with people outside of school and at home, so Jill’s House has become another home for her. Jill’s House has been providing stability and predictability for her since elementary school. She knows what she is getting and that she is being taken care of. Jill’s House helps provide Mimi with a good quality of life!

Mimi was born healthy, but when she turned one year old, we noticed some developmental delays. After a series of tests, we found out that she had a chromosomal abnormality. We learned that there could be a wide range of functional behavioral capabilities with this disorder, so we weren’t sure how her development would be. We started early intervention and tried different therapies. We even traveled out of state to see different specialists. We learned that there were different strategies we could try, and we were given lists of things to work on with Mimi, but nothing seemed to work. It was such a hard time for our family. We were exhausted, and so was Mimi!

Then, during Mimi’s annual visit with her pediatrician, we were advised to treat Mimi as a normal child. We were also told that her development curve was what it would be, and all we could do was bring her closest to what her curve was. Simply put, he told us to ensure she is healthy and happy with a good quality of life. We kept thinking, “Are we doing enough for Mimi? Are we pursuing all the answers? If we do more, will she be more functioning?” We needed to hear his advice. It was almost as if he had given us the freedom to simply love our daughter as God had given her to us.

Mimi started attending Jill’s House Weekend Program, then Summer Day Camp. We truly appreciate how Jill’s House’s team works together to support her! The amount of care and coordination is amazing. From the intake and program teams to the office staff—everyone works together to attend to and care for Mimi. We used to send food from home, but now we don’t even send her food because we are more and more comfortable.

We are relaxed when Mimi is at Jill’s House. We are comfortable with the high level of care she is given and grateful for how Jill’s House has impacted our whole family, not just Mimi.

Our older son was in middle school when Mimi started going to Jill’s House, so he can recall how exhausted and down we were before Jill’s House. Like us, he internalized the struggles that Mimi had gone through as a young child. With Jill’s House, he recognizes the difference Jill’s House has made in Mimi’s life and the impact it has had on our family’s journey. He volunteered at Jill’s House and made his independent financial contribution to Jill’s House. Jill’s House helped Mimi as well as the rest of us to find love, purpose, and peace of mind, we are very grateful for that.

We enjoy such peace of mind when Mimi is at Jill’s House, and we get to spend one-on-one time with our two other kids. That time is precious, and we appreciate it. We play games together or just play with our dog, Willow. We brought Willow home during the COVID-19 pandemic, he has been very kind to Mimi, and is such a great addition to our family.

Mimi expresses herself emotionally with smiles and cuddles. She can be very charming! While she is at Jill’s House, we believe she is at her best because she feels loved and very comfortable. The level of trust we have in Jill’s House allows us to truly rest! We have had a long family journey. I believe there is a purpose in everything, and Jill’s House has been such an important part of our journey and our family.

The Kalata Family

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Told by William & Maribel Kalata

We are a close-knit family! We watch movies together, we all talk about our favorite shows, and we spend a lot of time together at home. We are protective of our children, and our kids look after each other. Our kids are especially protective of their little brother, Ian!

Ian is 16 years old and full of life! Like other teenage boys, he enjoys his electronics and drawing, but because of Jill’s House camp, he has recently taken an interest in horses.

We have 2 cats at home, which makes him jumpy, and when he sees a dog outside, he will shriek back, but when he’s at camp, he becomes a different boy.

He not only enjoys the animals, but he also pets them. He has even gone riding on horseback! Jill’s House does that for him! Jill’s House helps him feel comfortable with new experiences and has helped him to be an adventurous boy.

Ian has been going to Jill’s House since he was 6 years old. The first weekend he stayed at Jill’s house was a nerve-wracking weekend for us! Leaving him for that first weekend was so hard. As parents, we felt guilty because Ian was never away from us. We were concerned that he would be okay, or that he wouldn’t understand what was happening. We worried about him eloping. We were very scared. But he had the most amazing time!

The second time he went to Jill’s House, he didn’t even look back at us as he walked through the doors!

Ian has been going to Jill’s House for 10 years. We know it’s less about how we feel when he is away and more about how much fun he has there and how comfortable he is. He loves Jill’s House so much, and we have grown to appreciate what Jill’s House does for him.

We think that Ian considers Jill’s House as an extended family. When we are talking about Jill’s House, whether it is going to the “big house” in Tysons or attending a camp weekend, his face lights up, and we know that he feels connected.

One of the nurses had the experience of being at both Jill’s House and at the camp, and she commented that when Ian is at Tysons, he is there to chill and hang out with friends.

But when he goes to camp, he is an adventurous boy! He is leading the charge and doing everything available at the camp. That is what Jill’s House has done for him. He has found relationships and connections, and he has gained confidence!

In terms of spiritual work—making sure the kids feel cared for, being kind and compassionate, and sharing God’s love—we think he understands all of that!

He’s not super verbal, but we will often hear him singing “Jesus loves me this I know”. We talk about Jesus and pray together, but we don’t attend church.

Jill’s House has helped Ian to feel the love of Jesus. I think he has made the connection between Jill’s House and Jesus, and he feels loved.

Jill’s House weekends are placed on Ian’s calendar, and we all do a countdown to these dates. Although Jill’s House is his special place, and the experiences are unique for him, we all feel like we have won the lottery. He looks forward to his visits so much that we can’t help but feel grateful in our hearts. We tell everyone about Jill’s House because of how much Ian loves it and what it has done for him.

The Wangsness Family

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Told by Stephanie and Jonathan Wangsness

We are an active family of four, if you include our family dog! We like to get outside, and we enjoy doing things together. We have a lot of love in our house! We say “I love you” a lot, which is so important to us.

We have extended family members who live nearby; however, we consider our whole family to be bigger than just us and our relatives. We have been blessed with many caregivers over the years, and they have all become part of our family.

These individuals are welcomed into our home and trusted with our daughter, Leksi!

We search very hard for compassionate caregivers who have the drive and empathy needed to be with our daughter. Although it has been very hard, and sometimes it feels like we are on an island, when we can step back and regroup, we realize just how big our family is.

Leksi received her diagnosis when she was seven years old, but our journey began when she was about twelve months old. Leksi wasn’t crawling, walking, or hitting her other milestones. We visited several of the top medical centers in search of answers, but test after test left us feeling uncertain and without clarity.

Finally, through a series of DNA tests performed by our geneticist, we received the answers we had been searching for and learned that Leksi has an STXBP1 Disorder.

Although we were relieved to finally learn of Leksi’s diagnosis, there had only been about 350 diagnosed cases worldwide. We love our girl, love that God has given her to us, and are so very grateful to be on this journey with her!

We found out about Jill’s House around the time we received Leksi’s diagnosis, when she was seven years old. Leksi is very social, and she craves being around other kids. She doesn’t have as many options for social interaction outside of school, though.

That’s where Jill’s House shines! While Leksi is at Jill’s House, she gets to hang out with her friends and enjoy time away from us.

Leksi can’t communicate what her favorite things are about Jill’s House, so we are immensely grateful for the written recap after her weekend stays.

Leksi loves music and friends, and we are always happy when we read that she enjoyed the music room, singing in the chapel service, and being with her peers.

When we first started taking her to Jill’s House, she would cry. But now, when she goes to Jill’s House, she is all smiles as she walks back to the POD by herself. We can see that she is happy!

We also can’t imagine what our marriage relationship would be like without Jill’s House. When Leksi first started going, we would call every couple of hours just to check up and make sure she was okay. But now, we no longer do that. We know she is safe and happy, and we are 100 percent comfortable, which means we can truly rest and enjoy our time together.

There is beauty in the blessing of having Leksi in our lives! Although caregiving has become more challenging as Leksi has gotten older, Jill’s House staff also see the beauty in her.

They don’t see kids like Leksi as a burden; they see them as blessings. We also hear from Jill’s House staff that they are honored to be with our kids. It is incredibly beautiful to know that Jill’s House loves our sweet Leksi and sees her as we do.

God gave us Leksi on purpose and for a purpose. Leksi continues to be a blessing to us and to so many, and we are grateful we get to share her with Jill’s House.

The Schaupner Family

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Told by Lindsey & Daniel Schaupner

Having a child with special needs was not something for which we had prepared. When Alex was born and the doctor told us she had Down syndrome, we didn’t know what to expect. It was a scary time! Being a family with a special needs child. Well, that was for other families. But that quickly became our family, too!

After Alex was born, our doctor gave us resources for our family. We were able to access support almost right away and enroll her in early intervention services. My OB suggested that I reach out to Jill’s House for support as Alex grows older, which was the first time we had heard about Jill’s House.

When Alex was around 18 months old, she contracted RSV and had to be hospitalized for 10 days. She was in the RSV unit of the ICU, where there were several other children with Down syndrome. RSV greatly affects kids with Down syndrome, and we learned that we could no longer enroll her in daycare because she kept getting sick so often. The hospital staff provided our family with additional resources, and that’s when we heard about Jill’s House again.

Since we were no longer able to enroll Alex in daycare, we had au pairs live with us, which allowed our whole family, and especially Alex, to build strong relationships. Although she was not enrolled in daycare to learn social skills in that setting, she thrived at home with au pairs who truly embraced her.

We became close with one au pair and later traveled, as a family, to Germany so we could visit her. We do a lot of things as a family, and our trip to Germany was special. Alex doesn’t just go along for the ride. In many cases, she IS the ride! While in Germany, she was more enthralled with castles and food than with history. We all enjoyed that trip so much that we were able to cater our trip to meet the interests of Alex — German food and cool castles!

When Alex turned five years old, we began the process of enrolling her at Jill’s House. The intake process took some time, but we wanted to be sure she was ready by the time she was the right age to go. We had family friends whose children had been going to Jill’s House and loved it. We knew Alex would enjoy it as well, and we couldn’t wait for her first stay! Alex is now 10 years old and loves staying at Jill’s House. She can be herself, enjoy time with her peers, and get a break from us! We truly appreciate the break, but Alex also receives respite when she is at Jill’s House. Jill’s House is her thing, her domain, and a unique experience for her!

Alex currently spends about three-fourths of her school day in a typically developing classroom, which amazes us! We know that many years ago, kids like Alex would not have been afforded these types of opportunities. The fact that she can have relationships with typically-abled kids is such a blessing. When we watch Alex interact with her classmates, we see that they genuinely enjoy her company. They may not completely understand Alex, and Alex may not completely understand them, but they know how their friendship makes each other feel. We cherish these moments when she interacts with friends at school, in our neighborhood, and at Jill’s House.

After school, Alex often meets a friend, and every time they see each other, Alex says “I know that girl from Jill’s House!”. The connections and friendships established through Jill’s House have made such an impact on all of our lives!

According to the form that comes home with Alex after her stay at Jill’s House, her favorite activities are swinging on the playground swings and swimming in the indoor pool. However, she is beginning to understand how to participate in a conversation. When we asked her what she enjoyed during her stay at Jill’s House, she immediately shared the weekend menu. She loves the chicken nuggets and fries!

Alex is a joy! We are grateful that Jill’s House recognizes how special Alex is, as much as we do. We are incredibly grateful for Jill’s House, not just for our family but for other families like ours as well!

Thank you for making stories like Alex’s possible.