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 Roland Family

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Told by Samantha Roland

Oftentimes, you hear something, and you can’t help but think, “Wow, that’s terrible. I didn’t expect that!” Our family has faced less-than-desirable diagnoses, depression, and fear. We have said, “Wow, we didn’t expect that!” but God used those moments; He has shown us that you can still be blessed. Our story is better and stronger, and we can’t help but say, “God is so good!”

When we were pregnant with Zoe, we opted to forego prenatal testing. We didn’t believe testing was necessary, as any result we might have received would not have changed the love we had for our unborn child. In hindsight, it might have been helpful from a preparation standpoint. We are older parents, but figured we were heading on a standard journey with a typically abled child.

When Zoe was born, we discovered she had Down syndrome, and our world became very confusing. We hadn’t received any resources and didn’t know how to care for a special-needs child. I remember a social worker speaking with us in the hospital, but even that meeting was discouraging. What we were facing was not at all what we had expected.

Zoe’s first year was full of medical appointments, and she had many seizures. She couldn’t even smile! We were in an unknown space, and I was unable to continue working at my job, as caring for my family was a lot of work.

Zoe is now 11, and though our journey was hard, we truly feel like we hit the jackpot with our sweet and tender girl. She is the most delightful person, and we are so grateful God chose her for our family story.

When Zoe was around 1 year old, God began to perform miracles in our family, as He began to heal us and knit us together! God healed Zoe of her seizures when she was a little over a year old, and my husband and I were strengthened as parents of a special needs child. Besides these miracles, the Lord brought Jill’s House to us!

I found out about Jill’s House from a mom at the playground. I was apprehensive, but excited to learn that Jill’s House is a Christian organization. Zoe has now gone to Jill’s House 3 times! She loves camp so much. Jill’s House is the most wonderful experience for her!

Zoe’s weekends at Jill’s House help her to feel like a grown-up girl. She gets to try on an independent life and enjoys doing things that other kids get to enjoy! She would probably say her favorite part about camp is sleeping in a sleeping bag, hanging out with friends, packing all her favorite belongings for the weekend, and spending a weekend away.

Families like ours don’t have much margin for anything outside our daily load. But we are also used to carrying it all. So, realizing that we aren’t carrying the load by ourselves, that we have a team of supporters and encouragers in Jill’s House, means so much. It’s just another way God has shown His faithfulness to us.

We have learned so much through Zoe! Walking through life with her and our community of friends has opened our eyes to the very special needs we all have. The team at Jill’s House has shown us that the most healing message anyone can hear is that even in your unloveliness, you are still loved! The team really covers everything they do for every child, with love and understanding. Having a team of people who love us, though we are different, is so healing to our hearts.

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 Anderson-Page Family

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Told by Pam Anderson

Born on the 25th of December 2007, Steven was a Christmas baby. He was placed with us when he was merely 6 months old. He was such a tiny baby—weighing only 6 lbs. when he arrived. Back then, I never could have imagined how radically he would change my life. He may not be my biological child, but I think of him as a precious gift.

At 9 months old, Steven was diagnosed with cerebral palsy, and we were able to get him into early intervention services. He went on to see different therapists and doctors. Over these last 2 years, he has had to undergo several surgeries. He has had bilateral hip surgery on both hips, developed contractures, has had to have surgery on one leg, and is about to have his other leg operated on this summer. He can no longer use a walker and is now primarily bound to a wheelchair. It has been hard, but he is a beautiful child and is taking on these challenges as well as he can.

Steven is very verbal. He speaks in phrases and can put words together to form sentences to tell you exactly what he wants and what he doesn’t. He is also very polite and charming, but he can be a pistol with me. I guess that’s what makes him a typical teenage boy.

I learned about Jill’s House many years ago through a friend on Steven’s T-ball team. I don’t know why it took me so long to inquire about it, but I’m so glad I finally did. I guess it’s because we as parents and guardians are so hesitant to send our special needs child into the care of someone else. We worry about our children and whether they will be all right or not. However, after observing Steven’s first weekend at the Rocky Top Weekend Adventures Camp, I wish I had enrolled him earlier!

Steven has now participated in the camp twice. As he was getting ready to go this last time, I heard him repeat to himself, “Make new friends.” As we arrived at the camp’s entrance, he rolled his window down and called out to his friends. It’s obvious that he loves the camp very much. When I picked him up at the end of the weekend, he went on and on about ziplining, water activities, and horseback riding. Yes, Steven went horseback riding! Who could have thought?

 

What I love the most about Jill’s House is that Steven can participate in various activities, and he is not made to feel limited in his ability. So many people are available to help each child experience all the activities, so if it was going to take 4 people to help Steven enjoy horseback riding, then that’s what they were going to do! One camp counselor told me, “Although Steven might forget about me, I will never forget about him.” In all honesty, I doubt Steven will ever forget how special the camp made him feel.

I suppose Steven would say that his favorite thing about camp is being able to see his friends. After all, being a special needs child can be very isolating; you can’t just run down the street and play with your friends. However, while at the camp, Steven gets to spend the entire weekend with his friends.

Since Steven is not my biological child, some people like to tell me just how good I am to be caring for him. What they don’t know is that he is the one who has been a blessing to me. He is a very special young man. I’m sure he would love to get up and run, but, unfortunately, that is never going to happen. I see him as a child sent by God, and I am committed to doing everything I possibly can for his sake.

Today, society has become more inclusive of kids and even adults with special needs by offering spaces for them to engage in a variety of activities; however, there is still a long way to go. Jill’s House does a beautiful job of helping these kids. I am so grateful for Jill’s House!

Thank you for making stories like Steven’s possible.

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 Perez Family

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Told by Coleen R. San Nicolas-Perez

The day Joaquin was born was one of the happiest days of my life. Holding my child for the first time filled me with indescribable joy. I gave birth to a darling, sweet, and perfect baby boy, and life at that moment was … well, it was blissfully perfect.

All the nesting I did beforehand, all the motherhood books I read, and all the stories I heard from moms of typical children did not prepare me to be the mother of my special son. Nothing really prepares you for that moment when a doctor sits you down and says the word “autism”.

Joaquin was almost 3 years old when he was diagnosed with autism. Before that, he was thriving, even excelling in some areas. He would easily match picture cards before the age of 2, and boy! he did babble nonstop while doing his best to articulate words. He could recite the alphabet and count to 100. More importantly, my dear son had a special sparkle in his eyes.

That began to change after his second birthday. He wouldn’t respond to his name, constantly walked around in small circles, and stopped making eye contact. What was heartbreaking was that he became very quiet—barely a whisper.

That sparkle in his eyes quickly disappeared. He was a shell of his former self, lost in a world I couldn’t penetrate as much as I wanted to.

It took many years of therapy, tests, school meetings, advocacy, prayers, and a lot of hard work on his part to get to where he is today.

He is considered non-verbal, although he does verbalize a handful of words. The popular word he says these days is “cheeseburger”, which is one of his favorite foods. He can write his name and trace other words. He knows how to make the sounds of many animals. I find it adorable, even today, when he says “moooo”. He can point at objects and usually says “that one”. He doesn’t read or write, but we know he is super smart.

Joaquin turns 17 soon. My little baby boy is no longer little and far from being a baby, but in many ways, he still is.

Several years ago, Joaquin was also diagnosed with intellectual disability. His IQ cannot be determined because he is unable to be evaluated using a standardized test. Even with modified tests, the data shows he is way below average in comparison to those of his age and those much younger than him.

Every year, we go through the data with his schoolteachers, and every year, I am left with an ache and void in my heart and soul. It is difficult to put into words how exactly it feels when educational professionals, across the table, basically tell me every year that my darling, sweet, perfect child is far behind where he needs to be. No parent wants to hear this, but many do.

My family’s story is not unique. As I write these words, I know there are thousands of moms and dads out there who are trying to do their best for their children with special needs. I also know that somewhere nearby, a mom is learning for the first time that her child is autistic. According to the CDC, 1 out of 36 kids are diagnosed with autism. That’s not a typo. 1 out of 36.

Data after data. Tests after tests. Results after results. This is a tough life. It is physically, mentally, and emotionally exhausting. This life has pushed me to the edge and will continue to do so. What keeps me and my husband going is and will always be Joaquin—our perfect child.

He is the sweetest young man you will ever meet. A gentle giant, many have said. When this boy loves, he does so with his whole heart and being. He is kind and respectful, and oh boy! Is he resilient? … more resilient than his independent, career-oriented mommy, that’s for sure.

He enjoys going to school and being with his classmates and teachers. He is all smiles and hugs when I pick him up after school, probably because we often grab a yummy treat on the way home.

Joaquin can also be impatient, vocal, and demanding, which he gets from me. As for his sunny disposition and good looks, he gets that from his daddy who happens to be my childhood friend and husband for 25 years.

As hard as this life may be, I would not want to be on any other journey. I am absolutely in love with my autism family.

Not only are we an autism family, but we are also a Jill’s House family. We joined Jill’s House a few years ago. In the beginning, I was very reluctant and nervous for my non-verbal son to spend a couple of nights under the supervision of strangers.

The first time he went to Jill’s House Blue Ridge camp, I was convinced the staff and volunteers would call me in the middle of the night to pick him up. There was no way he would want to stay. Plus, there was no way the Jill’s House staff would take care of him the way he needed to be cared for.

I was wrong. I was completely and utterly wrong.

That first weekend, the Jill’s House team never called. They did, however, texted me a few photos of Joaquin to reassure me that he was doing fine. He was more than fine. The pictures showed him smiling, laughing, and having as much fun at camp as he should, as any teenager should.

Fast forward to today, Joaquin now walks into camp as if he owns the place. If I could read his mind, I am pretty sure he says, “Hey, sup fam!” to every Jill’s House staff member and volunteer as he settles in for a fun, safe, and positive weekend.

Jill’s House is a place of “rest, renewal, and relationships for kids with intellectual disabilities and their families.” For me and my family, Jill’s House is also about saving lives, because that’s what they do. The founders, staff, board members, fellows, volunteers, sponsors, and contributors of Jill’s House save lives … and they bring life back into families.

Note: Coleen R. San Nicolas-Perez is employed with the Department of the Navy. The opinions stated in this editorial do not reflect that of nor is an endorsement by the U.S. Navy.

Thank you for making stories like Joaquin’s possible.

The Ver Hage Family

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Told by Kristy and Rich Ver Hage

Shane was born in 2010 and before his first 2nd birthday, he was diagnosed with Autism. Shane is now 12 years old, and such a great kid!

Recently, Jill’s House Weekend Adventure Camp came to our area, and it has made us and Shane so happy.

When the COVID-19 pandemic hit in 2020, his world stopped, just like everyone else’s. Around the time things started opening back up, he fell sick with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). In 2021, he didn’t feel well, developed brain inflammation, and started having seizures; his behavior had changed completely. Almost overnight, he went from being an active kid to not being able to walk for even five minutes without pain. It was such a shock to witness how aggressive PANS was, and how quickly it had taken control over his body.

We worked with our doctors for a long time to diagnose his condition and identify the right treatment for him. He feels much better now, and we are working really hard to help him regain his strength and energy. Due to PANS, he developed anxiety, so the Weekend Adventure Camp was very important for him! We were nervous about taking him to camp, but when we saw that volunteers who were part of our church were also going to be there with him, it put us at ease.

As much as we needed the weekend, he needed camp even more. We were so happy to learn that he climbed the rock wall! The encouragement and cheers he received motivated him, and he made it all the way to the top. He was so proud of himself for that accomplishment.

Shane attends a wonderful school, and he participates in a special needs Sunday School class at church. His world is pretty small. We know that he wants independence, but it’s hard. When he was at camp, he was independent and could do what a typically abled 12-year-old kid gets to do.

When it was time to pick Shane up on Sunday afternoon, we were so emotional and happy to see him. He was happy to see us, too. During camp, he received love, attention, and care. It was a truly special time.

Having a child with special needs is often a journey where you feel alone. We are very grateful to the many people who spent their weekend with Shane so that we could feel human again. It was amazing and a real blessing.

Shane kept saying, “I want camp,” for many days after the weekend. He has also taken on a new love of rock climbing, which we get to enjoy at a local indoor rock-climbing gym. We are so grateful for Jill’s House and look forward to many years of more weekend camp experiences. Thank you, Jill’s House, for coming to New Jersey!

Thank you for making stories like Shane’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.