When I was pregnant with Justin, I met a neighbor who was pregnant too. It turns out our children were due less than a week apart. We became fast friends. One week she invited us to attend her church. Todd and I had never attended church together in our marriage. I would go alone at times, but never a consistent practice. As Cindy shared about her church, I realized it was the same church a coworker attended and had invited me to in the past. I discussed it with Todd, and the following Sunday we decided to visit. We continued to go to church every Sunday after that.
While Todd and I rarely missed a service, we didn’t discuss our beliefs or faith. Todd knew I grew up going to church, but he did not. I vividly remember the Sunday morning we found out I was pregnant with Emily. I took a pregnancy test before church, and off we went. It was the first Sunday of the month, and Communion would be part of the service. Todd had never taken Communion, and I remember leaning over to him and reminding him what it would mean to take Communion. As the bread and juice were passed, he took both. In retrospect, it was a defining moment in solidifying my foundation in my faith. God knew that our family would need more than a good man, but a man of faith for the challenges we would endure. (And boy we have endured challenges.)
Our church family became an important part of our lives. When Emily was born, my church friends had my back. They supported us like no one else. Friends offered to help with Justin and take him on play dates. We had meals dropped by. I even remember friends coming to clean my house when I was struggling. They supported us through the loss of our business, financial struggles, mental health issues, and other monumental moments in our family. We had a place that was our home, and where we were welcomed with open arms.
As Emily aged, it became more challenging to take her to service. The nursery and preschool programs were on the ground level, but the programs for older children were on the second floor, and the church did not have an elevator. Since Emily depended on a wheelchair and was becoming too heavy to carry, the second floor was not an option. Emily was allowed to stay in the preschool class long past preschool age. As she got older, she became more distracting and disruptive in the preschool class.
I volunteered at the church on Monday mornings doing various office tasks while my kids were in school. One day I was approached by someone in leadership. She wanted me to know that at some point they would no longer be able to accommodate Emily. Due to the lack of accessibility and her disabilities (not her exact words), we would need to figure something else out for her. I felt like I had been punched in the gut. I held back tears as she explained the facts. She wasn’t unkind or cruel, but the hurt was almost unbearable. My heart was breaking inside, but I did not let it show. I was devastated.
When Todd came home from work, I shared the conversation we had. I could see the hurt and pain on his face. Often when my husband is hurt, it is expressed with anger, and this time was no different. Todd said that if they wouldn’t accommodate or accept Emily, we would not go back. And we didn’t. For almost ten years, Grace was our sanctuary. It was our second home, and overnight it was gone.
It still hurts to open this door and share the experience. God’s house is the one place where I thought Emily would always be accepted. Maybe I was naive. I remember my mom sharing a story about the day my Great-Grandfather left the Greek Orthodox Church. He was sitting in the service, and a baby started crying. The Priest asked the parents to leave the service with the crying baby. As they got up to leave, so did my Grandpa Nick. As he walked out, he said, “If crying babies are not allowed in God’s house, then I am not staying here either.” He never stepped into the church again.
I would love to say this was an isolated incident, and we found another place to worship that embraced ALL of Emily and our family 100 percent, but that is not how this story has gone. Todd and I have attended at least 5 other churches. They all welcomed us at first. Emily has sat in the main sanctuary with us at a Calvary church for weeks. She lasted through most of the service, and then I would walk her outside if she became too restless or disruptive. One Sunday, the Pastor greeted us after church. He mentions next Sunday is Easter and asks if we can sit in the room for nursing moms and watch the service on the screen. Our family did this, but then it was expected we would go there each week, and I refused to go back. I can watch a church service from the comfort of my home.
Other churches have special needs ministries for children but not older kids and adults. One church we attended had a ministry for disabled adults, but they were isolated from the congregation, and I could hear Emily’s vocalization from the main church. I was uncomfortable. We have not found any church that embraces Emily’s intellectual disabilities and behaviors completely and welcomes our family into the fold completely. After many attempts, we gave up, and I am content with that decision.
Our family hasn’t attended a church service together in over a decade. When Justin was in high school, he would sometimes get jobs playing the trumpet at a church. Todd or I would attend the service (one would stay with Emily). I never said that I was going to service. I would say that I was attending Justin’s gigs at the church.
Emily is almost 23, and church attendance is not a part of our lives or in our plans. For years I struggled with our reality, but now it is a loss I have grieved and moved on from. God is everywhere and I can find Him anywhere. There are no barriers or obstacles, and He knows my heart.
I pray one day established churches do better at meeting the needs of all believers. One day they will accommodate and embrace all of God’s children. They will fight for the rights of the born children as hard as they fight for them before birth. They will fight for children and adults that are challenged, disabled, and need others to care for them. They will make their buildings ADA compliant, not because the law requires it, but because it is the right thing. They will accept children and adults that are loud or even disruptive, because God has made them perfectly just as they are, and He accepts them. They will reflect God’s love for all of His people made in His image, including adults like Emily.
“The servant came back and reported this to his master. Then the owner of the house became angry and ordered his servant, ‘Go out quickly into the streets and alleys of the town and bring in the poor, the crippled, the blind, and the lame.’ – Luke 14:23
3 thoughts on “Disability and the Church: Our Family’s Story”
I never knew this story 😔 that’s where we met
We left Grace for Los Altos because Kyle attended pre-school there
I wasn’t even aware of the severity of Emily’s disabilities until we connected again on Facebook
One thing I know l… you are helping so many through your blogs and sharing
That’s what God wants most… not necessarily for us to be in church but to carry the message of hope and Gods love
I do that through AA ❤️🙏🏽
I’m heartbroken to read about your experience in church! I grieve with you that the very place that was intended (by Jesus…imho) to be the place where community would provide additional support for your family (Acts 2:45; Acts 4:34) was the very place that withheld that support and pushed you to the margins.
My daughter, Tirzah, will be 4 in June. She also has TBR1. I’m grateful that we have a church community that provides love and acceptance for our family that you also received when Emily was young. I do anticipate that things will become more difficult as Tirzah ages. Though, I am also hopeful that our community will progress with us on the journey. I think it helps that we are quite small (fewer than 100 adults… maybe closer to 50 on most Sundays).
I subscribe to a quarterly publication called Plough. Their Winter 2022 issue was called “Made Perfect” and most of the articles addressed the topic of ability / disability in some way.
Peter Mommsen wrote a beautiful editorial that gives me real hope that their are communities that embrace the Christian life as inclusive, where “bearing one another’s burdens” and “sharing all things in common” are more than just pie-in-the-sky ideals.
I pray that church will find you and receive the blessing of a life shared with Emily!
Thank you for your words and advocacy!
First, typos are the best. I love to be reminded I am only human and mistakes happen. Secondly, I appreciate you taking the time to respond. It has been a gift to get a diagnosis for Emily and find a community of parents that I can connect with that share similar journeys! Thank you for the information. I cannot wait to dig into the publication and editorial you linked in your comments.
With MUCH Gratitude,