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.

The Allard Family

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Charlie and SisterMeet Charleigh and Family

“As a military family we have moved a lot, but we have been able to call Virginia our home since 2015. This past spring my husband retired from the Army, which means we could live wherever we want. But Northern Virginia has so many great resources, schools, and of course Jill’s House. There’s no reason we would leave!”

 

“We have 2 daughters, and my mother lives with us as well. Our oldest has gone off to college which means Charleigh, our 15-year-old daughter is the center of all our attention.

Charleigh is a happy, healthy girl who loves her iPhone, taking rides in the van to school, playing outside, and eating good food.”

Charleigh and Sister Younger“Before moving to Virginia, we lived in Oklahoma, which is where Charleigh was born, New York, and Texas. Charleigh was much younger when we received the first diagnosis of Severe ASD.”

“When Charleigh was 10 years old, we received an official genetic diagnosis. She has CDK13 which is an incredibly rare genetic disorder, with only 231 known cases worldwide. When she was younger, we actively pursued different therapies and doctors. We researched the genetic components of her diagnosis to provide the best care for her, and to help her achieve her milestones. Then when we moved to Virginia, a lot of opportunities opened for us. The resources are incredible! We had never really considered the scope of supports available for us here in Virginia.”

 

Charleigh and Ronald McDonald“Shortly after arriving in Virginia, Charleigh’s developmental pediatrician asked if we had heard about Jill’s House, which of course we hadn’t. Hearing about Jill’s House was a complete blessing!! We were so focused on providing the best care for Charleigh, that the idea of respite had never entered our minds.

Charleigh first started going to Jill’s House when she was 8 ½ years old. Her first visit was a weekend stay and she loved it! Our whole family loved it. She has been going to Jill’s House for almost 7 years now, so we have all grown to really appreciate and value those weekends.”

 

Allard_ Charleigh _4_“Jill’s House is set up to meet all Charleigh’s needs. She enjoys different activities and transitioning quickly between those activities. The staff are so attentive, kind, and patient with her. Charleigh is provided a mini vacation with play on the moon bounce, swimming in the pool, and fun outside on the playground. While Charleigh is at Jill’s House we enjoy a slower pace at home. We eat dinners while watching movies and enjoy quiet mornings.

Charleigh attends a private, day placement year-round school. Her school is so great, and best suited for her and her needs. Another benefit is that Jill’s House partners with her school and provides weeknight stays for students. Jill’s House staff pick up the students from the school, the students spend the night at Jill’s House, and then staff return the students to school the next morning. So, during the school year, Charleigh also gets to stay at Jill’s House one night a week.”

“Jill’s House has been the one constant in our lives for so many years. In fact, Charleigh has been going to Jill’s House for so long and she knows where her suitcase is, that whenever she’s angry with us or simply wants to go, she will grab her suitcase and drop it in front us as if to say she wants to go. Now! We love how much she loves going to Jill’s House.

Charleigh is safe and happy at Jill’s House, and we can relax knowing that she is receiving such wonderful care!”

Thank you for making stories like Charleigh’s possible.

The Knowlton Family

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Meet Margot and Family

“To describe Margot in one word it would be, tenacious! She is a great friend, and a strong advocate for kids with special needs. She is sensitive to the needs of others and has such a great spirit! Margot was born with Down Syndrome and has always had to work extra hard to do simple things. But she is wonderfully tenacious.”

“Margot considers herself to be an average 15-year-old high schooler and she has a good group of friends. She has an older brother who will be going off to college in the fall, and a 4-year-old brother we adopted after fostering him when he was a baby. We know Margot sometimes feels left out, being a girl with special needs in the middle of her brothers, but she truly loves her family.”

“As a toddler we received in-home therapy support and the therapists would often come to the home with their bags of toys and treats. Margot quickly learned that bags were like a treasure chest! You never know what is inside. If we were at the beach or with other friends, she would often go through bags hoping to find something fun. She had such a light even as young toddler that her inquisitiveness wasn’t a bother! She has always been very curious of people”

“Now that Margot is 15 years old her curiosity has turned into compassion. Margot was crowned Miss Illinois Amazing Junior Teen and she will be going to Nationals in July. This is an advocacy event that empowers young women with special needs to speak up for themselves, to gain confidence, and to inspire others. Margot wants to be a writer when she grows up and has been doing a lot of writing. She also volunteers, does charity events, and advocacy work for kids with disabilities. We are so proud of her!”

“Margot has a great friend group of kids who have special needs and some who do not. Margot would say that she and her friend group are ‘Really cool!’ . They do typical teenage things like go to the movie theater, go to McDonald’s, or hang out at each other’s home. Though she has great time with her friends and her family, we also know that she needs something special and just for her. Margot’s special place is Jill’s House Windy City Camp!”

“We were so happy to learn about Jill’s House around 4 years ago. A friend of ours shared that she was working at the Windy City Camp. I had no idea this camp existed! We connected with the camp staff and immediately enrolled her.”

“Now that Margot has been going to camp for several years, she has developed some favorite things about camp. For starters, Margot considers herself a foodie and says the food is really good! She also loves having a camp buddy. But hands down, her most favorite thing about camp is the Talent Show. Margot will carefully prepare for the Talent Show. She plans what she will do and what props she will bring. She will sometimes dance or sing along to a favorite song.

“Camp has been so great for Margot! She knows a few of the girls who attend camp regularly, and she loves being able to spend time with other kids who have different special needs than herself. In our family with an older brother and a younger brother, camp is Margot’s special place where she gets her special attention. While Margot is at camp, we spend one on one time with our other kids. We are relaxed because we know that Margot is cared for. The nurses really show love and care for Margot, and that means so much to us. When we pick up Margot from camp, she chatters about her camp experiences for the first few minutes of the 90-minute car ride home. She will sing her favorite camp song, “Father’s House” and share about the talent show. But camp is also exhausting! It never takes long before she is fast asleep.”

“We are so grateful for Jill’s House and the Windy City Camp and providing Margot a place to be herself and feel special.”

Thank you for making stories like Margot’s possible.

The Smith Family

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January 29  |  3 minute read

“Jessica and I are missionary kids from Southeast Asia and high school sweethearts! After getting married, we spent some time in Alaska—in fact, on our first Sunday at our church there, we announced that Jessica was pregnant! We had lost our firstborn shortly after she was born, so we were very excited about this next pregnancy. Lo and behold, our son Trevor came two weeks early that summer. 24 hours after he was born, he started turning blue, so we were medevaced off the island to a children’s hospital in Seattle. A few days later the doctors found out Trevor had Down syndrome, which was a complete shock to us. No one in our extended family was familiar with Down Syndrome in any way—so not only were we surprised, but we were also unequipped and very much alone.”

“Trevor has transformed our life in many ways and has given us a passion for the special needs community. A door opened when we heard whisperings about the Jill’s House Windy City camp. When we found out that was an option, we pursued it, hard. Once it opened, we were at the very first Windy City Camp weekend and have been at almost every camp since!

Respite opportunities are very hard to find—especially in Illinois. There is very little funding for it, especially in Illinois. Children who have special needs carry their own challenges, so that certainly impacts the options for someone to provide respite care. There is no other organization we know of that facilitates nights away like Jill’s House does. Jill’s House is tackling and pioneering a very challenging task, and for that we are very grateful.”

“It is a bigger ask to request family to stay with Trevor overnight and he doesn’t have friends that he goes to have sleepovers with. Knowing that we could send him away for a whole weekend, that he would have a total blast, and that we could do something together or take our other kids on special adventures was HUGE. It really is something that he looks forward to in a big way—he is such a huge fan of Jill’s House, and it is a very special privilege to have something so cool that he really loves. He has a great time, every time.

Trevor is very unique—I don’t think we’ve ever met a child with Down syndrome like Trevor. He is very high-functioning, very verbal, very involved in all parts of life, and is very athletic (he loves doing high intensity workouts!). Trevor loves to play his drums, he is deeply loyal to his high school (he is super proud to be a Tiger!), and absolutely loves movies. In fact, at Windy City Camp he will organize the entire Jill’s House staff into all the parts and characters of movies, and then they reenact the entire film, wearing costumes, as Trevor narrates!”

“Besides running camp like he is the prince there; Trevor tells us that his favorite things about camp are ‘his buddy and the s’mores’. The buddy he is paired with each weekend becomes his new best friend for life!

We had a nearly year-long break during the pandemic, but once Camp Windy City opened back up, Trevor was able to go again! He verbally expressed several times how much he missed Windy City Camp during that time.

Another thing that we are so grateful for about Windy City Camp is the staff: they are just fantastic to interact with. They are enthusiastic and professional and joyful all at once. The paperwork they do is proof that they are tracking Trevor so closely: an indicator of how intentional the staff try to be. Jill’s House does everything they can to make each weekend a special weekend.

At home, there is pressure on our other kids to include him, or on me to entertain him. While he is having his own weekend adventure at Windy City, we can all relax. We don’t have the added level of “Well, what’s Trevor going to do? How is he going to engage?” We miss him when he’s gone, we are always ready to have him back, and we love hearing about his fun times at camp, but it is very lovely to just have that brief time of relief from the ongoing stress and tension we feel each day.”

“Churches are often looking to bless families like ours. They have big hearts, they are well-intentioned, but the ways they are typically able to help is not what we truly need at the core. They will do a big Saturday morning activity or show a movie for families affected by disability. But that limited time is not true respite. What our family really needs is a weekend off. That is too hard for a church to pull off without the help of a place like Jill’s House.

That being said, Trevor has gone to a full week-long camp before. He had the time of his life, but he was out of his routine, and we ended up doing damage control at the end of it. For that reason, a weekend is a very reasonable amount of time to entrust others to care for Trevor. Jill’s House is not long enough that things will get overlooked, but long enough that we all get that true respite: Windy City Camp is the perfect amount of time for Trevor and for us.

Unless you have a child with special needs and live the day-to-day underlying stress that that places on a family, and then feel the relief when that is taken away temporarily, I think it would be hard to understand exactly how amazing Jill’s House is for a family like ours. All we can say is a huge thank you to you for making this opportunity possible and accessible for us and for Trevor.”