A Place to Belong: One Family’s Search for Community
“By this everyone will know that you are my disciples…” John 13:35
When Raelene and Dan talk about life with Simon, “Our gentle giant,” love flows through their words—a harmony unifying the complexity of their life. At 21 years old, Simon, who has a rare chromosome duplication known as Dup15q, is the eldest of Raelene and Dan’s three children. And for Sydney (19) and McKenzie (16), Simon has always been there, the beloved big brother who needs full-time care.
“Life with Simon has never been easy. It’s been a blessing and it’s been amazing, but it’s never been easy,” says Raelene.
Simon’s condition causes significant developmental delays, autism, intellectual disability, limited communication capacity, sensory processing challenges, pica (which means he eats non-food items), epilepsy, digestive difficulties, and mobility challenges.
Dan describes his family’s wholehearted approach to caring for his son: “Simon requires 24/7 care. He needs to be within eye distance at all times. It is very much a team effort.”
Growing up as part of a family caregiving team, Sydney and McKenzie have been formed by Simon’s needs. Caring for Simon is not just a role for each of his family members, but a calling. Every moment of the day requires selflessness and intentionality: managing medications, navigating hospital stays, interpreting Simon’s unique ways of communicating, and making sure he feels safe and loved.
“As a family, we’ve all felt the weight of Simon’s needs—emotionally, financially, and spiritually,” says Raelene. “It affects our time, our choices, our energy, and sometimes our ability to simply be present for one another… There are days when it feels like we are barely holding things together, and others when Simon’s joy, his laughter, or a quiet shared moment reminds us just how much beauty exists even in the hardest circumstances.”
A Struggle for Belonging
With routines and experiences drastically different from those of most peers, Simon’s sisters sometimes feel marginalized.
“A lot of our life revolves around Simon’s care,” says McKenzie. “There have been so many times we’ve had to leave events early because he was overstimulated or had a meltdown. And sometimes… we didn’t even get to go at all. Having friends over has always been tricky too. Some get uncomfortable, others don’t know what to say, and it just… makes things complicated. So, we learned to keep certain parts of our life private.”
And even though Raelene worked for decades in children’s ministry, after years of investment in their church community, the pastor demonstrated that there was no longer a place for Simon in the congregation—or others with disabilities.
As Raelene recalls:
“The pastor began asking me to ask individuals with special needs to no longer come to our church because it was distracting and people were feeling uncomfortable. When we left the church, I really struggled to find where my faith was and who I was in Christ. It took us about two years to be open to joining a community again…”
Finding Community at Family Retreat
“Family Retreat was the very first experience we had back with a body of believers,” says Raelene. From the moment they arrived at their first Family Retreat, the whole family felt something shift… they felt seen, understood, and unconditionally embraced.
At Family Retreat, Raelene and Dan had their first experience letting someone they hadn’t previously known care for Simon. And as they saw Simon smile and laugh, ride the zip line, giggle through a dance party, and light up during worship, Raelene and Dan discovered refreshment and peace like never before.
“Family Retreat is very special to us,” says Dan. “It gives Simon a time to feel celebrated. He got to do the all-terrain chairs on the beach. He loves the horses. If he wants to shake sticks, if he wants to make noise, if he just wants to lay down on the grass, no one looks at him like, ‘Why’s he doing that?’ It’s been a great time of rest and rejuvenation here for us.”
“My entire family benefits from Family Retreat,” Sydney says. “They all get to do what they enjoy. My brother really enjoys the dance party. He was giggling so hard.”
An Extension of the Heart of Jesus…
Within the Joni and Friends community, Sydney and McKenzie laughed, played, and talked late into the night. They didn’t have to worry about what people thought of Simon or hide parts of their story.
“Everyone just… got it,” says McKenzie. “We were normal. We were welcomed—not as broken people to be fixed, but as image-bearers of God, uniquely created, fully seen, and deeply loved.”
Both sisters also loved volunteering at Family Retreat, serving as one-on-one buddies for participants in other families.
Best of all, McKenzie shared, “Joni and Friends reminded us of God’s love lived out through action. It reminded us that the body of Christ, when functioning with love and humility, is beautiful and healing. The people at Family Retreat live out the Gospel—not with words alone, but through service, compassion, and joy. It’s truly an extension of the heart of Jesus.”
Spread the Hope of Jesus in Northwest
Your gift today will provide belonging and joy in the body of Christ to families living with disability! Learn more about Joni and Friends Northwest.
