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.

The Edelbrock Family

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Told by Laura Edelbrock

Before Emma was born, my husband and I both had full-time careers in music. I was a high school music teacher, and he had served with the US Army Band for 35 years. Then in 2000, God gave us Emma! We knew before she was born that she would have Down syndrome, and when she reached puberty, we learned that she was autistic as well. We moved from a lifestyle of practice, performance, and perfection to this lovely life we now have with Emma, which we like to call the real life!

 

When I was six months pregnant, we found out that Emma would be delivered in this beautiful package, and for the next three months we embarked on a journey to prepare our lives and our hearts for her. But we spent many sleepless nights worrying about the future of our family. One such night, when I just couldn’t seem to fall asleep, I decided to read the Bible, knowing that was where I would find the comfort my heart longed for. I was reading a passage in Luke about the two disciples on the road to Emmaus. This was a story I had read often, but that night, I heard God’s voice clearly speaking to me.

The two disciples were talking to each other, despondent, when they were met by a stranger. The stranger asked them, “So, what are you talking about?” They simply responded, “We had hoped for something different.” I had to stop reading. That was us! We had hoped for something very different with our pregnancy and with our family. But then as I continued to read the story, I was reminded that the stranger on the road was the risen Christ. Jesus had come for the brokenhearted. He had come for us! My heart cried out, and I started weeping. I looked down at the Bible, my vision so blurry that I couldn’t even make out the heading of the section I had just read—“On the Road to Emmaus.” Through my tears, I saw the word “Emmaus” split into “Emma” and “us.” God had given us her name, and I knew in that moment that we were exactly where we were supposed to be.

Emma was born on a beautiful snowy day. We could feel the peace around us, and on our ride home from the hospital, we felt the need to stop at our church, where we found our pastor in his office. We had been surrounded with love and understanding during our pregnancy, and that afternoon, with our pastor, we dedicated Emma and our life to the Lord.

We knew that from that moment on our lives would be radically different, and for 23 years, God has not stopped writing our story into a memorable tale.

Emma started attending Jill’s House in 2014, but it took us a long time to get to that point. In my mind, I thought Jill’s House was for families who had children with different needs than ours. However, as Emma approached puberty and we began facing new challenges, we were encouraged to reconsider Jill’s House. Not just for Emma but for us!

We cautiously moved forward with our decision. Our intake meetings were successful, but we were unsure how Emma would respond to staying overnight in a new place, away from us. We worked with our intake team to create a “social story” of Jill’s House on her iPad, uploading pictures and videos of the different rooms at Jill’s House and then inserting her own picture into those rooms. The story helped us introduce her to Jill’s House and all the activities she would participate in while staying there.

 

When Emma’s first visit arrived, we still weren’t sure how her time away from us would pan out. Would we get a call in an hour or late at night? We never received a call, and when we picked her up at the end of the weekend, she was so happy. The staff kept thanking us for allowing them to spend the weekend with her! After a few more overnight stays at Jill’s House, she would barely wait for the car to come to a complete stop before jumping out and running into the building.

The blessing of Jill’s House goes far beyond Emma’s overnight stays—they continue in the form of family retreats, Bible studies, women’s retreats, and marriage retreats. Now that Emma is 23 years old and out of school, we have established relationships with other parents who are in the same situation as we are. We encourage one another and share resources.

Emma is nonverbal, but she is incredibly expressive, so daily maintenance can get busy and jumbled. That’s where Jill’s House blesses us the most! God led us to Jill’s House—a place that lets Emma do what she loves the most while allowing us the time to rest. She would return to a quiet and peaceful home, and rejuvenated, we would be able to completely dedicate our time to her.

Our story took a big turn, but God was so good to prepare us for it, and he continues to keep us close. Emma is such a blessing to our family and to others around us, and through Emma, we have been blessed by Jill’s House.

Thank you for making stories like Emma’s possible.

The Edwards Family

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Told by Cathy Edwards

Keith is the youngest of our six grown children. We are blessed to have four grandchildren, with one more on the way. Every day, we are grateful for the ways God has shown his love for us, through our family.

When Keith was born, I could feel the grace and patience of Jesus’s love for him in my soul. Keith was born with Down syndrome and autism; but we all knew that Keith was God’s perfect plan. He is now 21 years old and has been attending Jill’s House since 2010. If Jill’s House had not been part of our lives for all these years, it’s hard to imagine how things would’ve been.

Keith’s first weekend stay at Jill’s House was two months after it had opened, in 2010, when he was 11 years old. We were so nervous, as we had never before considered the idea of respite or our child staying away from home overnight. But I’ll never forget the look on his face when we were driving home after the first weekend. He appeared to be in a kind of dream state, as if he were replaying the whole weekend in his mind. It was almost as if he couldn’t believe it was real; maybe he was wondering if it was going to happen again. He was quiet. And this type of behavior wasn’t typical for him; so I knew, at that moment, that Jill’s House was really something special.

Between each visit, Keith would mark the days on the calendar until his next visit. He had been going to Jill’s House for about a year, when we began noticing how comfortable he was. He would walk into the building and say, “POD two, please!” He was so at ease that it was almost as if he were checking into a hotel.

Though Jill’s House has mostly been for Keith’s benefit, it feels like God has used Keith and Jill’s House to impact the whole family!

After observing Keith at Jill’s House, our middle daughter applied to be a volunteer there. Later, she took a staff position. She said that she had never worked at a place where people just loved to be there. She had once considered going into Nutrition. But, observing Keith at Jill’s House and being on the team as a volunteer and an employee changed her heart, and consequently her career path. When you witness people come forward to help fund a cause or help serve, it replaces fear with love. It inspires you to step up and do the same. We feel that there is no other place in the world for families like ours. Our daughter is now a Special Education Teacher.

When Keith was younger and we were attending the McLean Bible Church (MBC), we were excited about Jill’s House opening in the community. Before that, Keith would participate in the Access Ministry at the church, while we would attend the worship service. It was during that time when our faith in God’s sovereign plan was really nurtured. We were attending the MBC, so Keith could participate in the Access Ministry. However, we believe that God provided a space for Keith, so my husband would return to church. It was while we were attending the MBC that my husband accepted Jesus as his savior.

God’s plan, for our lives, is always greater than our plan!

While we feel very fortunate that Keith has had all this time at Jill’s House, we also feel sad that he will be aging out of the program in a few months. Our dream is that Jill’s House continues to help families, even as kids grow into adulthood. Jill’s House brings such joy and comfort to families!

Keith loves interacting with people, using technology, and making people laugh. He loves kids and will be assisting us as we develop a Special Needs Ministry, at our new church. We are excited to see how God uses Keith to bless others in the future!

God’s plan is always greater than anything we could possibly dream of, and God’s grace is always sufficient.

Thank you for making stories like Keith’s possible.

The Winiecki Family

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Told by Jennifer and Scott Winiecki

Our daughter Wendy has such a funny sense of humor! She is entertaining and very interesting, but she is hard to get to know because she is nonverbal. Well, she’s not completely nonverbal. She does say one word, “Mom”. Wendy also knows about 6-10 words in sign language. Of the few words that Wendy signs, she will sign “dog” when she sees a dog. Well, one day we were sitting together, and we asked Wendy, “Who is this?” as we pointed to her mom. Wendy said “Mom”. Then we asked Wendy, “Who is this?” as we pointed to me, her dad. Wendy smiled at me and since she is unable to say the word Dad, she signed a word. The word she signed was “dog”. Wendy laughed and laughed at her joke.

 

Since Wendy is nonverbal it is hard to see what is going on unless you pay attention, which is why we love Jill’s House so much! Wendy’s Direct Support Professionals are always paying attention to her. Wendy would probably say her favorite thing about Jill’s House is that she gets her own personal friend for the weekend; a friend who plays with her goes to the different rooms with her and spends time with her. It’s a special time for Wendy!

Our family lives north of Baltimore, so we are only able to participate in Jill’s House Weekend Program. We would love to participate in Jill’s House Moms or Jill’s House Dads events, but we are just too far. But what we can participate in is so worth it!

When it is a Jill’s House weekend, we have learned to pack her suitcase while Wendy is at school. We pick her up from school and drive directly to Jill’s House. It might take us 2-3 hours to get there on a Friday afternoon, but she is so happy to learn that it’s a “Jill’s Weekend” she will sing the entire way. Even though we can’t make out the words she is singing, we know it is a very joyful tune. On Sunday when we pick her up, she is happy to see us, but there is no comparison to the joy she shows on Friday when we are dropping her off.

I am the secretary for the PTA at Wendy’s school and oversee the emails that are directed to the Board. About 8 years ago, a new family had moved into our community and had asked if any places offered respite. The President said that the family should contact Jill’s House. I had never heard of Jill’s House at that time, so I decided to look into it as well. We took a tour and fell in love with it! Wendy was about 5 years old at this time, so we got her on the waiting list so she could go when she turned 6 years old. She’s been going to Jill’s House ever since!

 

While Wendy is at Jill’s House, we enjoy doing activities with our 16-year-old daughter. We may choose to travel out of town, stay home and watch a movie at night, or simply sleep in. Our whole family is very active, and we are always together, but we also know that our activities can get boring for Wendy. Jill’s House is a break in our routine and very exciting for her!

Wendy has an iPad with a communication app called Proloquo2go. The app came with basic buttons for Wendy to communicate with us, and we have logged in to customize buttons for family members, school, and vacations. We have a whole page dedicated to Jill’s House!

In 2020 we went on a Jill’s House Family Retreat. We all had a great time! The Jill’s House shuttle bus was there, and since Wendy loves buses, we would often visit the bus throughout the weekend. I took a picture of the logo on the bus, and that is the picture we use on her iPad button for Jill’s House.

We know a lot of families with children who are medically fragile, families whose caregivers are battling sickness, and even some families who have lost their children. Some of these families, we know very well. And while they are waking up every morning in what can seem like really difficult circumstances, they still get up each morning. It’s so good to have perspective. So, we have a family motto. “Get up and do it anyway!” It might be hard, and the days might be long. But we only have one choice. So, get up and do it anyway.

What we want for Wendy are meaningful days, and that’s what Jill’s House does for her. We know that Jill’s House focuses on giving the kids like Wendy meaningful days.

Thank you for making stories like Wendy’s possible.

The King Family

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Baby Simon - Jill's House Stories

Meet baby Simon

Meet Simon and Family

“From the moment my son, Simon, was born, I felt like God had been preparing my family for Jill’s House.

Peter and I are longtime attendees of McLean Bible Church and participated in fundraising events to build Jill’s House. This was before we had children. We attended fundraising banquets and Peter participated in a marathon to raise funds for Jill’s House. I was pregnant with our first child at that time, and we were excited about Jill’s House coming to the community. While we were supporting Jill’s House financially, we did not know God was preparing us to experience Jill’s House firsthand!

Young Simon

Young Simon

Fast forward several years, and the organization we grew to love and support, is now a respite for our own family and a safe haven for our son, Simon.”

“When I was pregnant with Simon, the pregnancy progressed as expected, however, toward the end, the pregnancy changed quickly. Simon appeared to be in distress, and as a result of an emergency C-section, was born 5 ½ weeks early. Shortly after delivery, we were shocked when the doctor told us Simon had physical features consistent with Down Syndrome. The room became still and quiet. The doctor peeked over the curtain at me and I said, “He is my son, and I will love him forever!” I knew in that moment God had given him to me, to us, to our family; we trusted in the promise that God works all things together for His good. A few days following Simon’s delivery, I read in the birth file, “Mother has accepted child.”

King Family Skiing

When Simon was born, he had significant respiratory issues and remained in the Neonatal Intensive Care Unit (NICU) for 5 weeks. When we finally brought him home, we adjusted to life with our fourth child. In addition to the typical needs of an infant, we initially focused on managing Simon’s medical needs: numerous specialist appointments, medications, speech therapy, occupational therapy, and physical therapy. Over time, as his medical needs stabilized, and he developed physically and cognitively, it became apparent that he required constant supervision to keep him safe. The amount of supervision Simon required exhausted Peter and I and left us with little energy for each other, or for our other 5 children, ages 3-12.”

“Simon is now 7 years old and is extremely active. He enjoys playing outside, swimming, going to the beach, and building with Legos. In addition, he plays Challenger Baseball, which is for children with differing abilities, and participates on the neighborhood swim team. This fall he trying football, too. Regular physical activity is essential for Simon!”

Meet Simon King

Meet Simon King

“We enrolled Simon at Jill’s House when he turned 6, and this past Spring, he had his first day camp and overnight experience. The timing was perfect; we were physically exhausted from his high level of activity, coupled with mental exhaustion due to a constant fear of elopement. We were discouraged by our limited options for respite.

During Simon’s first overnight at Jill’s House, we took our other children to a Japanese steakhouse for dinner. Since Simon’s initial camp and overnight stay, he has participated in school weeknights stays, summer camp, and another weekend stay at Jill’s House. Jill’s House has revolutionized our life! When Simon is at Jill’s House, we know he has a blast participating in activities he loves, and we can spend more focused time with each other, and our other children.”

Simon King

“I joined the Jill’s House Moms Community Bible Study, and my husband participates in the Jill’s House Dads gatherings. Other Jill’s House moms have been an encouragement to me. On the weekend retreat, one insightful mom shared that we live our life forward and understand it backwards. Looking back on our life with Simon, I can see how God has guided us through each and every day. God has never let go of our family.

Because of Jill’s House, our church, and local community, we have established relationships that love and support our family. We are eternally grateful to be part of the Jill’s House family.”

Thank you for making stories like Simon’s possible.