How was a family like ours supposed to live out the practice of discipleship? The instruction in Matthew 28:19 seemed impossible for us.
Roughly six years ago, a miserable “stomach flu” turned into cause for celebration; I was pregnant with my second child. My husband and I had previous miscarriages, so we held our breath through the first trimester. After a few months of a normal, healthy pregnancy we apprehensively picked out a name for our daughter: Katherine. At 35 weeks, however, my unremarkable pregnancy turned perilous. A sonogram revealed our baby had developed fluid on her brain, building up dangerous pressure under her skull. Further inspection also uncovered the evidence of a stroke. Katherine was delivered within 24 hours of the frightening discovery, and throughout the next year she was diagnosed with Cerebral Palsy, Epilepsy, Blindness, Autism, heart defects, and much more.
Our lives changed almost immediately. Medical bills and appointments began to stack up, and my husband had to pick up a second job. Meanwhile, I quit my career to chauffeur Katherine from hospital to hospital. Our parenting debates even changed; instead of cloth versus disposable diapers, we were discussing whether our infant should take Klonopin or Valium. By the time Katherine was two, my husband and I were mostly adjusted to this new reality, and these once-intimidating tasks were almost easy.
We were still stumped by one problem not medical in nature, but missional. How was a family like ours supposed to live out the practice of discipleship? The instruction in Matthew 28:19 seemed impossible for us. “Go, therefore, and make disciples of all nations.” Jesus couldn’t have meant all Christians, right? In addition to the responsibilities all families juggle, Katherine had an average of ten appointments per week and a dozen medications to keep track of. We felt like we had too much on our plate to be effective disciple-makers. We believed our family was the exception to Christ’s commandment, and so for several years we were only on the receiving end of discipleship. Friends would serve us, counsel us, encourage us, and teach us. It seemed unlikely we would ever pour back into anyone other than our kids. Eventually we realized our perspective on discipleship was too limiting and that Christ’s call was for everyone—even special needs parents.
Modern evangelical culture has painted us a somewhat narrow picture of discipleship. When most of us think about discipleship, we imagine the weekly coffee shop cliché where we quietly discuss the Bible and swap prayer requests with ease. This style of discipleship will probably never be attainable for me or my husband.
The Bible provides us with more than one method when it comes to discipleship. The disciples of the Bible learned from Jesus while they worked and ate meals together (Luke 5:27–32), as they traveled together (John 7:1–13), as they celebrated holidays together (Matthew 26:17–30), and more. We are not limited to the peaceful coffee shop Bible study but are free to make use of our everyday routines to build up the church body. When we understood discipleship is a way of living rather than a specific event or meeting, making disciples seemed much more attainable despite our situation. For our family, “life on life” discipleship now included medical appointments, wheelchair fittings, and IEPs. In fact, bringing other people into this unique world of ours has become our primary discipleship methodology. When others enter our most vulnerable spaces, they aren’t just spending time with us but get to witness struggles they never considered before and are brought into contact with people they never would have met otherwise.
For example; several church members have sheepishly admitted to me that they once felt uncomfortable around those with intellectual disabilities, but spending time with Katherine has reduced their unease. Confessions like these showcase the fruit of our discipleship efforts. These friends were once afraid to love freely and engage an unreached and isolated people group, and now they are able to simply because I had them tag along for a few appointments. As our community lives alongside our family, they are being equipped to share the Gospel of Jesus Christ with everyone. If we had refused others access to our unique experiences, we would have denied them an opportunity to grow as disciples.
Making adjustments for the mission
Even with this new perspective, discipleship as a special needs parent still requires some practical adjustments. Participation in our church’s missional communities was a challenge. Our daughter can’t walk, and most MC leaders don’t have homes that are easily accessible for her. It was tempting just not to participate at all, but we decided to host our missional community at our apartment instead. This is somewhat unique for families like ours, who tend to sequester themselves into their houses with limited community contact. If someone had asked me five years ago if I would have a dozen people over for dinner and fellowship once a week, I would have laughed at them. God used our unique challenges as parents to push my husband and me out of out comfort zone, and now sharing our home is typical for us.
Teaching our daughter
It’s a challenging reality that our daughter may never be able to read the Bible or understand exactly what Jesus Christ did for mankind. My husband and I are supposed to teach her the Gospel as well, but she may be the toughest one to teach! While there are many unknowns when it comes to her discipleship, I do know this; Katherine is beloved by our church family and is constantly surrounded by disciples who are trying to make more disciples. By merely opening our lives up to our brothers and sisters, our disabled kindergartener has seen discipleship and community more clearly than many adults have. That communicates something powerful to a little girl with limited understanding—that community living and discipleship is God’s desire for those who love Him.
If you’re a special needs parent, how can you learn from Rachelle’s experience and invite your community to be a part of your disciple-making, day-to-day activities?
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