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 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 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 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.