The Edwards Family

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

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

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

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.