“We don’t know if he will ever walk, talk, or see.”
Those were the words of the hospital staff as we prepared to take our newly-adopted son home. He was born at 24 weeks, weighing just one pound and two ounces. After his 100 days in the neonatal ICU, we were about to step into the unknown, becoming the parents of a child with significant disabilities. We were not experts.
What we were to learn along the way is that God does not demand experts when he sets us into difficult situations. He asks only that we lean on him.
The one thing we were certain of when that fragile, tiny baby was laid in our arms is that we loved him. But for the first couple of years, we’d hit the pillow at night exhausted, thanking the Lord that somehow we managed to keep the little fellow alive one more day.
This was our second adoption. The first was an adorable baby girl born three years earlier. We remember going into that first adoption process with a specific fear: How could we love her as much as we would if we were her biological parents?
But our adoption worker at the time assured us that loving the baby would be easy. She also wisely pointed out that there are three different ways we can come into a family—through childbirth, adoption, and marriage. All are legitimate, and all can be the basis of deeply loving relationships.
Since then, we have marveled at the fact that we come into God’s covenant family not in just one of those ways but in all three. We are born again, adopted as his children, and become the bride of Christ.
With that as our foundation, we were amenable to the idea of a “special needs” adoption the second time around. We would be ready for whatever God would have in store for us. After all, isn’t that what we would say if we were going to give birth to a child naturally?
But soon enough, we found that being open to the idea and being prepared for the reality were two different things. Other than being willing and loving, we were entirely unprepared.
Feeling Overwhelmed
As soon as our “special needs” baby came home to us, we were introduced to an abundance of unfamiliar phrases, terms, and acronyms. I (Kathy) took them on because, well, that’s what a mama does! There would be various therapies, social services, case workers, least restrictive environments, mobility evaluations, and adaptive learning. There’d be retinopathy, behavioral modification, and spasticity clinics. There’d be AFOs and RSV, IEPs and ITPs, FAS and SSI. The kid’s binder of all the paperwork would grow heavy and feel overwhelming.
Consequently, most of the time, life felt overwhelming. And we hadn’t even yet begun to consider what our son would do one day for a job . And where would he live? Could he ever get married? Should the Lord have chosen other, more capable, parents to raise him?
Still, never once through the days and years did God abandon us to figure out the world of disability on our own. Often, we have learned only by making mistakes. But God’s faithfulness and provision through family members, friends, pastors, medical professionals, educators, therapists, neighbors, and so on have been such a comfort to us that at times it nearly takes our breath away.
Despite the difficulties that accompany raising a child with multiple disabilities, we have seen the Lord’s perfect designs for our family. He has used us to encourage one another and to be a blessing to others. We have delighted in the many relationships and have had a home filled with laughter. Over the 26 years since our son arrived, we’ve seen that the Lord has always gone before us and never leaves us or forsakes us (Deuteronomy 31:8).
Has it always been pleasant? No. But has he steadfastly held us in his hand? Yes.
Pastoring With A New Perspective
Just over 10 years ago, while I (Kevin) was serving as a full-time associate pastor, one of our church members, whose two boys have autism diagnoses, asked me if I would help him disciple his sons. These young men were a part of our church family, and we loved them, so I said, “Yes.” But I had no idea how to disciple a teen with autism. That conversation led to the formation of a Sunday School class for a group of six young men (including our son) with developmental delays.
We studied God’s Word, tailoring every lesson from Genesis to Revelation for their understanding. I wasn’t an expert by any means. My only experience came from being the dad to our son with cerebral palsy.
Over time, my skills improved. I found I could teach this group in a meaningful way. They, in turn, taught me week after week what it looks like to have childlike faith. That class is now a mid-week Bible study for a growing number of adults with intellectual disabilities. Some are from my church; some are from the community. We continue to study God’s Word, grow in grace, and share humor and joy with each other.
Along the way, my own church has expanded in its capacity to enfold kids, teens, and adults with disabilities. We are at ease during worship and sermons with the sounds of our friends with limited expressive vocabularies. We understand that those are what Charles Spurgeon once called “the sweet sights and sounds of a holy hubbub.”
We don’t have a big, formal disability ministry. We are not experts, but we are learning what it looks like to step into the unknown and love our friends with disabilities.
Equipping Churches
I (Kevin) have had the privilege of serving on the team at Engaging Disability With The Gospel since 2021. In that time, I have met with hundreds of PCA churches and have noticed a recurring element: they all have become aware of one or more families in their church impacted by disability and want to do something to better enfold those families into church life. But they know they are not experts and fear they will do or say the wrong thing. As a result, they often have done nothing.
I have also learned that many of the families touched by disability wrestle with fears. They worry that their church will eventually say their needs are too much, and they will need to find a new church home.
Our churches can proactively address that unspoken fear through affirmation and conversation. Our feelings of incompetence vanish when we make simple efforts to reach out. Tell the families at your church touched by disability that you love them. Let them know you’re glad they are part of your congregation. Show them through acts of kindness and friendship. Get to know them, hear their stories, learn what they enjoy doing and what gifts every member of the family has. You do not have to be an expert to do these things!
From there, you can begin to learn more about the barriers they face at church. Are there things that limit or prohibit a family’s participation and inclusion? These might be actual physical barriers (like the lack of an elevator or hearing assistance devices). Or they might be social barriers (like struggling with making small talk or not being a very proficient reader). Together, you can begin to remove those obstacles, one at a time.
Most importantly, I believe that Romans 15:7 can encourage us to move forward in faith. Along with Paul’s exhortation to pursue peace and bear with one another—both the strong believer and the weak, the Jew and Gentile—he writes, “Therefore, welcome one another as Christ has welcomed you, for the glory of God.”
How has Christ welcomed you? He has welcomed you with all your spiritual disabilities. Truly, you and I can’t be more disabled than dead: “You were dead in the trespasses and sins in which you once walked” (Ephesians 2:1).
We mirror the way Christ has welcomed us when we act in faith and intentionally love our friends impacted by disability. We don’t have to be experts in disability to love well.
A Lifetime of Learning
Nearly 30 years into parenting, we are still in awe at how our heavenly Father leads us by the hand to be the parents he wants us to be. We are at home with the understanding that we’re not experts, but we know the One who is.
Our good King walks beside us, redeeming our feeble and flawed efforts and then crowning us with his steadfast love and compassion (see Psalm 103:4). We, in turn, can bless our friends with disabilities with that very same love and compassion, bearing their burdens, showing grace, and giving God the glory.
Kevin Daane is a PCA minister who serves as director of disability ministry coaching with Engaging Disability with the Gospel. Kathy Daane serves as an editor with Haven Ministries.