The Church calendar is moving us into the Lenton season and this can feel ominous to parents raising families affected by disability. My husband, Larry, and I still groan at the memory of a drama that unfolded for our family one year on Good Friday. The stressful evening has become a representative story about how children grow up with very unusual church experiences when they have a sibling with special needs. And this was especially true around the holidays.
It was late in the week before Easter and our oldest daughter, Alex, announced that she was serving with friends in the youth group of another church during all of their Good Friday services. Larry and I were excited to see her involvement and were eager to enjoy getting to know her friends and their families. We also knew that taking Carly along was going to present some challenges and require special care. Little did we know, the excitement of walking into an unfamiliar, dark, and noisy auditorium would excite Carly enough to trigger her chronic reflux. As she and I were walking through a crowd of people moving in all directions to find seats, Carly threw up on the carpet and all down the front of her jacket.
Larry and I locked eyes in horror. The service was starting momentarily. There we stood with quite a dilemma and just seconds to solve the problem! In a flash, our satisfied relief with having actually arrived on time for a service became a tsunami of emotions ranging from embarrassment and worry that Carly’s symptoms would be misinterpreted as contagious to resentment and straight-up grief. I stood straddled the mess on the floor to prevent anyone from stepping in it and Larry grabbed Carly’s wrists to keep her from playing in the food she had regurgitated. We frantically threw together a plan and Larry headed to the car. I would attend the service with our middle daughter, Erin, then Larry would return alone for the next service while I took Carly home.
Larry cried angry tears while driving around in the car with Carly for the hour. I sat near the back of the church with Erin and wept. Robbed. That’s what we felt. The enemy was stealing another of our opportunities to enjoy Jesus and a faith community together. All around us, life went on. For better and for worse, nobody seemed to notice what was happening. And as I sat there distracted from the meaningful worship, I looked at our Erin beside me. There she sat patiently and quietly, but in her own world of disappointment.
That was a very lonely day. Yet it was a rude replay of many other days when the world of Jesus-lovers around us seemed oblivious—or worse—intimidated or apathetic about our world.
Thankfully, for every story of heartbreak like this, our family has had remarkable experiences in Christian community too. Unfortunately, for many families like ours, the positive church stories are few to none.
These are some of the ways our children missed out on having a typical church experience when they were growing up with a sibling who has special needs:
We rarely arrived on time so they often missed the fun opening portions of Sunday school.
They grew to be acutely aware of how their sister’s noises and excessive movements during a church service may be disturbing others.
Family worship was regularly interrupted by one of us taking Carly for a walk in the hallway or a trip to the bathroom.
They finished a lot of services feeling either self-conscious, resentful, or just plain weary from helping to minimize their sister’s disruptions. The well-meaning compliment, “she is SO good in church” would sting when they knew their dad was sweating through the sermon ensuring that Carly didn’t grab the hair of someone within reach.
They celebrated spiritual milestones (e.g., first Bible, first communion, baptism, confirmation) while wondering when their sister with special needs would get her turn and what that would look like.
When other families rallied together for a fun lunch at a nearby restaurant after services, we were seldom able to join them. Eating in a restaurant, let alone with a large group, required layers of planning ahead and various accommodations.
We are grateful that our neuro-typical children experienced unusual blessings from their church involvement as well. A few examples include:
During the earliest season of Carly’s life and diagnosis, our family received much practical help at home from our church family (e.g, household chores, meals, therapy assistance). Alex and Erin saw the love of Jesus modeled and those dear people took extra care to give attention and encouragement to them as siblings who could easily have fallen through the cracks of a family crisis.
As youth, each of our children had the opportunity to thrive in their own community apart from the “shadow” of any other sibling or parent.
A couple of key adults stepped into our daughters’ lives as informal mentors to encourage them and be supportive. I believe this effort was initiated with Alex more intentionally because people recognized she was without family, attending a youth group at a different church. And they were sensitive enough to appreciate there were unique things about her life experience that meant she needed extra emotional support.
Let’s give some thought to how we can help write more of these positive stories. As leaders, we model and inspire our church families to get to know one another and move toward each other’s worlds. In so doing, we will find our churches celebrating community that increasingly reflects the heart of Christ.
And let us consider how to stir up one another to love and good works, not neglecting to meet together, as is the habit of some, but encouraging one another, and all the more as you see the Day drawing near. Hebrews 10:24-25