Hawkins Family

Hawkins Family

January 29  |  3 minute read

Doug and I have two children, Charlotte and Cooper, who are affected by an ultra-rare genetic disorder. They are sweet, fun kids who both need specialized support with all aspects of daily living and have really significant needs, which is exhausting.

Charlotte and Cooper’s disorder is caused by a disruption to their FAM177A1 gene.  The loss of function of this gene has caused intellectual disability, autism, seizures, sleep disturbance, motor issues, congenital cataracts, and more.

We love the Pacific Northwest and have chosen to raised our family here but unfortunately, we don’t have family nearby, so there aren’t a lot of opportunities to get respite or family support—so I am always looking for ways to find rest. When I heard about Jill’s House, I was very interested, and it sounded just amazing. Having a place like Jill’s House to go is great for our kids and great for us. We were one of the first families to try it out in Seattle, and we were really anxious, especially for our little one, Cooper, who is nonverbal. Having met the Local Program Manager, who was so caring and wonderful, we were put at ease. Jill’s House met us right where we were: hearing our concerns and doing what they could to make it feel right for us. Originally, the plan was to drop our kids off at a meeting place, where they would be taken by shuttle bus to camp. We didn’t feel comfortable with that before getting a visual of what camp was like: where they’d be sleeping and eating and playing. So, Jill’s House let us visit camp, and it was so beautiful! After seeing it in person, we felt comfortable leaving the kids for the weekend although we were still newvous.  A few hours after that, we got a text from the Local Program Manager saying “The kids are doing awesome! They’re all smiles!” And she sent us a few pictures, which showed exactly that!

From that point on, our shoulders just dropped, we settled in, and we had an amazing weekend. We picked the kids up on Sunday and they were happy, wonderfully worn out, and had been so well cared for.

Months later, I was at a fundraising event for Jill’s House and shared our story there. A man came up to me after I spoke and said: “I know who you are! I work at camp and was heading out to go home when you arrived for your children’s first visit. My family says our prayers every night at dinner, and I asked the Jill’s House Local Program Manager if there was anything we could be praying for that night when I went back home. She pointed to you and your husband and said: ‘There is a couple who just dropped off two of their kids, and they’re really anxious about it. You can pray for that family.’ And so, I went home, went to the dinner table, and my wife and children and I prayed for those kids and for you.” Now he knows who he was praying for! It came full circle for us.

Once we got that first camp under our belts the questions turned into: “How often can we come?!”

Charlotte and Cooper loved camp from the first stay! Each time they have attended, Doug and I would pick an activity such as playing golf and going skiing—we are an adventurous couple but can’t always carve out the time to do these things. We have really enjoyed our time while the kids are at camp, and we are able to enjoy it because we know the kids are having a blast, too!

Charlotte has limitations in her language, but makes it VERY clear in her own way how much she loves it! She says all the time: “Go Jill’s House! Go Jill’s House!” She has pictures up in her room of her in the canoe with her counselors, and throughout the pandemic has been so eager to get back to them!

Caring for medically complex kids is extremely hard, especially during the pandemic.  And, having two severely impacted children is exponentially challenging. There is never a dull moment. The level of vigilance we must have is very high, as our children have huge safety risks, and don’t understand the danger of a busy road or wandering off. There is a constant need for supervision and care. They need help getting dressed, with eating, with everything. It is tough. It is a lot.

Typically, we have a robust team of people to help us: between Jill’s House, school, therapy, and caregivers, we are kept afloat. Even under the best conditions, it is a lot to coordinate.  When the pandemic began, all the help dried up. There was no school, and then when it became virtual learning, our kids could not access it. In fact, that exasperated things for them. We saw a significant increase in behaviors and seizures in our children, and the days were extremely long. Our kids are very, very dependent on predictable schedules and activities that keep their skills and interests up. During 2020, there was nothing to look forward to with no hope that change and relief would come.

We are grateful that things like school have returned, and cannot wait for Jill’s House Puget Sound Camp to phase from day camp to full overnight, weekend camp! Once that happens, we’ll be a good shape.

We have an older son, Nash, as well. He is 17-years-old and the weekends his siblings have camp are good for him, too!  Our pace of living mellows, the house is calm and quiet, we are all able to get some respite.

Charlotte is 15 years old and is hilarious—she is as silly as they come! She loves dressing up in costumes, she loves when things fall off her counselors’ heads, and she loves jokes. At camp, she sleeping in the cabins and loves animals, especially the horses. She has an amazing memory and will forever remember the really special moments at camp, like seeing a horse sneeze or getting to go in the canoe. Camp really is the perfect fit for her.

Cooper is 10-years-old and is like a little puppy-dog! He is super loving, communicates with his eyes and gestures, stares straight into your soul, and just you get wrapped around his little finger. He loves to stack up blocks and then knock them over, and he is nonstop! He is on the go and into trouble all the time! Camp is also so perfect for him.

The feeling Doug and I get when we drop my children off at Puget Sound Camp is priceless. We know that Charlotte and Cooper are going to be loved. It’s not just a babysitter and it’s not just “good enough”. The staff and volunteers are devoted to our kids and want to make a difference for them. Plus, the team has clearly been transformed by time with kids like ours. They know our kids! The level of care that comes from Jill’s House is exceptional, and I want to say thank you for making it that way! You have given us something we really could not find anywhere else, and for that we are so grateful.

Enjoy this story? Share it with your friends or read more like it!

Share on facebook
Facebook
Share on google
Google+
Share on twitter
Twitter
Share on linkedin
LinkedIn

 © 2018 Jill’s House

Enjoy this story? Share it with your friends or read more like it!

Share on facebook
Facebook
Share on google
Google+
Share on twitter
Twitter
Share on linkedin
LinkedIn

 © 2018 Jill’s House

2019 Volunteer Dinner

2019 Volunteer Dinner

January 29  |  3 minute read

On April 8th, the Jill’s House community had an incredible time celebrating the volunteers that help make this house feel like a home. Volunteers, staff, family, and friends gathered for a special dinner in honor of the men and women working behind the scenes. As they enjoyed a delicious meal, guests heard from Brenda and her son Brady, a cherished Jill’s House family. Brenda shared her experiences, challenges, and triumphs of raising a son with intellectual disabilities, while Brady joyfully expressed some of his favorite times at Jill’s House. Jill’s House has 200 active volunteers at our Tysons location that step into a variety of roles. They serve as Group Buddies, Kitchen Helpers, Administrative Helpers, and Receptionists on the weekends and weekdays. Within these roles, volunteers help create a welcoming, friendly, and loving environment for our kids to feel comfortable and free to be themselves.
“Jill’s House simply would not exist without our volunteers and their faithful service here. We could not run our programs, host our events, or complete our work without their help, and we are overwhelmed with gratitude for their choice to partner with us in this important mission.”  – Mary Rachel Robbins, Volunteer Program Manager
Thank you to all our volunteers for the invaluable work you do for our kids and families. We also want to recognize the tremendous work of Mary Rachel, who has served Jill’s House faithfully for over 6 years. She has continuously gone above and beyond to provide the best possible care for every member of the Jill’s House community. Thank you for your service!

Enjoy this story? Share it with your friends or read more like it!

Share on facebook
Facebook
Share on google
Google+
Share on twitter
Twitter
Share on linkedin
LinkedIn

 © 2018 Jill’s House

Enjoy this story? Share it with your friends or read more like it!

Share on facebook
Facebook
Share on google
Google+
Share on twitter
Twitter
Share on linkedin
LinkedIn

 © 2018 Jill’s House

Chessy

Chessy

January 29  |  3 minute read

A Moment of Joy

The lights shine faintly on a girl softly singing, “The sun will come out tomorrow” in the center of the stage. Lights are dimmed, the volume is lowered, and chairs are spaced out so the audience can move freely.

Isaac jumps up and down, moving with excitement as he watches his first sensory-friendly production of Annie. 

His mom is beaming with joy.

Motherhood

Chessy is a single mom taking care of her two boys, Isaac and Adrian. At an early age, Chessy’s oldest son Isaac was diagnosed with Autism. 

He is mostly nonverbal, and can sometimes exhibit self-injurous behaviors. In the midst of understanding this diagnosis, Chessy strived to reshape the future she once held onto for Isaac. 

“When you bring a child into the world, you have a vision for what their life is going to be. Realizing that vision won’t come true…you go into mourning. It was challenging coming to terms with the fact that my life would never be what I thought it would.”

Loving Support

Although the vision for Isaac’s life had changed, Chessy was so blessed to have the support of her loved ones through every circumstance. Even through times of hardships and moment of gladness, the love Chessy has for her son remained constant. And just like his mother, Isaac is a kid, caring person. 

He is not always able to express himself verbally, but Isaac communicates joy through his facial expressions. His face lights up when he sees someone he knows and cares for. 

“Isaac is mostly nonverbal, but one phrase he does say is, ‘I love you.’”

Jill’s House

Chessy loves her sons, and she is always seeking to provide new experiences that will cate to their individual needs. 

When Chessy takes Isaac to Jill’s House for a weekend, he gets to enjoy swimming, playing outside, and connecting with the loving staff. 

“The moment we walk through the door, you can feel the love they have for these kids. That’s why my kids love going there. That’s not something you can fake, it comes from a place of realness.”

Chessy uses her time away from Isaac to rest, recharge, and spend time with Adrian, her typical son. Knowing her kids are genuinely loved and cared for allows Chessy to rest and take some much needed time for herself. 

Her world revolves around her two sons, and they mean everything to her.

As someone who understands the world of intellectual disability, Chessy’s life is a reflection of the love she hopes to see in the world. She is not afraid to let Isaac try new experiences and meet new people. In doing so, Chessy teaches though around her that Autism is not something to be feared, and that people with Autism want to be accepted and loved for who they are.

Life for Chessy

Chessy enjoys working as the Finance Director of her local theater. Last December, her theater produced the sensory-friendly performance of Annie in hopes that children with intellectual disabilities could enjoy a show with their family.

Isaac was one of the enthusiastic audience members who got to appreciate a show that was suited just for him. Chessy was thrilled to share that experience with her son.

A life with autism was not what Chessy expected, but it has greatly impacted and shaped her view on life. Instead of focusing on what she can’t do, she focuses on what she can do. She focuses on those moments of joy she can share with her sons.

Chessy may not know what the future holds, but as she sits in the darkened theater, watching her son’s dace light up with excitement, she can’t help but feel like the song echoing throughout the audience is being sung just for her.

Enjoy this story? Share it with your friends or read more like it!

Share on facebook
Facebook
Share on google
Google+
Share on twitter
Twitter
Share on linkedin
LinkedIn

 © 2018 Jill’s House

Enjoy this story? Share it with your friends or read more like it!

Share on facebook
Facebook
Share on google
Google+
Share on twitter
Twitter
Share on linkedin
LinkedIn

 © 2018 Jill’s House

Spencer

Spencer

January 29  |  3 minute read

Spencer Whelan doesn’t remember his parents explaining Down Syndrome. His sister, Hayden, was just who she was- empathetic, strong-willed, hilarious, and kind.

In the Whelan family, she wasn’t treated any differently. She was a daughter, a niece, a cousin, and a sister- all the same.

And like any good older brother, Spencer took care of her, defending her on the playground when kids were cruel and loving her anyway when she put ketchup on her mac & cheese.

Hayden looked up to Spencer, and he was her protector.

Until he couldn’t be.

In their early teen years, amidst the already ever-present health struggles of a child with an intellectual disability, Hayden was diagnosed with cancer.

Suddenly, the role Spencer played shifted entirely.

“I didn’t really know how to address it when I was that young, so I just kind of did my own thing. She’s so tough.” Spencer explained, “She went in and out of the hospital getting chemo, and she was just so strong.”

Though it was a painful and confusing time for the entire family, after months of resilience and treatments, Hayden reached a full recovery. Once again life made sense.

Then came the fall of 2013.

Spencer had just made the big move from his Sacramento home to start his freshman year at Azusa Pacific University. The contents of his final moving box had been neatly put away, and the evening temperatures began to dip below the 80s, signaling autumn for California. That’s when he got the call.

Hayden had a stroke.

“It was one of the few times I cried in college,” Spencer remembers painfully, “and after a while I started to get depressed; because I also just had [this] transition, and I was trying to find my support…that was the first time I really asked the question, ‘why is there pain in the world?’”

So Hayden once again began her fight to recovery and Spencer began his journey of discovery.

Answers didn’t come easily, but slowly, the searching process started to transform Spencer.

“[Looking back], I can’t say that I understand it or that there’s a purpose in it,” Spencer admits, “but I can say God is good and he is just. Maybe I don’t get to see why it makes sense or if it does at all, but I know that Hayden’s still here and His faithfulness was shown through that.”

And it’s through that search for answers, Spencer began to find meaning in the struggle.

“Now I’m somebody who is passionate about people who are on the margins whether that be people with disabilities or people on the streets experiencing homelessness. That’s what I gravitate toward…. because of my sister.”

“I want her to experience love and community, and I want to work so others can have that as well.”

That’s why Spencer chose to spend his first post-grad year as a Jill’s House Fellow, making that happen for kids with intellectual disabilities.

For Spencer, the fellowship is more than just a year of learning about himself, it’s a year of learning to be selfless.

And it’s in that space of selflessness that he is free to be more confident and affirming, more empathetic and vulnerable. Free to love people for who they are without expecting anything in return.

A little more like his sister, and lot more like his Creator.

The best version of Spencer.

Enjoy this story? Share it with your friends or read more like it!

Share on facebook
Facebook
Share on google
Google+
Share on twitter
Twitter
Share on linkedin
LinkedIn

 © 2018 Jill’s House

Enjoy this story? Share it with your friends or read more like it!

Share on facebook
Facebook
Share on google
Google+
Share on twitter
Twitter
Share on linkedin
LinkedIn

 © 2018 Jill’s House

Brady

Brady

January 29  |  3 minute read

On the first warm day of February with the last rays of the afternoon streaming in through the trees of the playground, Jill’s House client Brady Boose places his fingers on the laces of a bright yellow football, brings his arm behind his head, and launches a perfect spiral into the air. With the word “Winning” displayed across his grey t-shirt, he bounces across the yard, ready to make a game winning catch.

“Goose Boose. That’s my name,” he says with a hearty laugh and a contagious smile that extends all the way to the corners of his eyes, wide with excitement as he begins to answer a series of questions about what it means to be Brady Boose.

At 17 years old, he stands at a height just above 6 feet and enjoys doing what you might imagine any teenager would, throwing a football, working on strength training, playing video games with his older brother, and watching TV shows like Drake and Josh and Big Time Rush.

Family is important. Though away at college, his brother is still an indelible part of his life. Just hearing a, “Sup, Brady!” on the other end of the phone fills him with joy and shortens the distance between them.

Brady lives with his mom, the person he loves most of all, and when he was asked what he loves so much about her, he beautifully responded, “Because she loves me, and she loves the whole world, really.”

He looks on the bright side. You can’t help but love life more just by being in his presence. He asks honest questions and gives honest answers, expecting the same from others. A McDonald’s lunch brings him joy, and a pesky leg cramp brings him pain. He thinks playing football and running fast are the two greatest things in the world and flying like superman would be the coolest. His goal is to become more sociable and strong, and his desire is to be more like Mr. Brad, a Client Care Specialist at Jill’s House. 

Sometimes it can be difficult to see the good in others, but Brady reminds us it’s not really that hard. Friendship with him has only a few requirements (an openness to tossing around the ol’ pig skin for starters), and his acceptance is refreshing.

After answering his last question, he returns to doing what he always looks forward to on beautiful, sunny days at Jill’s House. Racing through the grass, he looks over his shoulder once again for the flying yellow football, and it’s clear to see he isn’t defined by who he is not, but rather, who he is.

He is a young man with goals and a purpose; a son with a kind heart and loving spirit; a friend with an energetic and easy going demeanor. He looks at the world with hope and joy rather than skepticism and frustration. Written in silver lettering across his shirt, we see Brady Boose is more than just living. He’s Winning.

 

Enjoy this story? Share it with your friends or read more like it!

Share on facebook
Facebook
Share on google
Google+
Share on twitter
Twitter
Share on linkedin
LinkedIn

 © 2018 Jill’s House

Enjoy this story? Share it with your friends or read more like it!

Share on facebook
Facebook
Share on google
Google+
Share on twitter
Twitter
Share on linkedin
LinkedIn

 © 2018 Jill’s House