I had a flashback while reading Andrew and Rachel Wilson’s new book, The Life We Never Expected: Hopeful Reflections on the Challenges of Parenting Children with Special Needs. It was to a time when we were young and living far from home, sitting around with a bunch of other moms and dads, talking about the joys and struggles of being parents.
When you read The Life We Never Expected, you feel like you’ve been transported into the Wilsons’ living room to shoot straight with them about life and parenting—only with a twist.
God, in his great wisdom, saw fit to bless the Wilsons with two children with autism. It may be worth stopping here to say what autism is and isn’t. Some tend to think a few good spankings, more rigid discipline, and a parenting course or two will straighten things out, but you cannot discipline genetics. Autism is “a neurodevelopmental disorder characterized by impaired social interaction, verbal and non-verbal communication, and restricted and repetitive behavior.” Its cause is unknown, and it manifests in a variety of ways—Asperger syndrome, pervasive developmental disorder, not otherwise specified PDD-NOS, and childhood disintegrative disorder are all related disabilities on the Autism Spectrum.
In the case of the Wilsons—who are part of the leadership team at Kings Church in Eastbourne in the United Kingdom—both their children (Zeke and Anna) showed signs of autism around age 3. It was regressive autism, meaning both had been meeting typical developmental milestones, but then started going in reverse.
I still remember the day we received the diagnosis of my son’s disability. He was barely six months old. There was a kind of relief knowing the cause of his delays, but the Wilsons had a different experience. And Andrew isn’t ashamed to tell us how, when the second diagnosis came, he
was overwhelmed by the most sweeping, drowning sense of pain and anguish I had ever experienced, ran into the playroom, curled up on the floor, and wailed until I thought there was nothing left. It was, and still is, the lowest point of my entire life.
That’s the kind of raw honesty that pervades The Life We Never Expected. And that’s what I loved most about it. There’s a kind of denial the Christian church tolerates when it comes to disability. We often ignore things that scare us or we don’t understand. The Wilsons, however, bravely invite us into their world to taste their anguish and joys.
This book is much more than a lament. It’s that, but it’s also a vivid description of God’s dependability amid the sorrow and chaos of disability.
Care of the Local Church
The Wilsons humbly describe how the particular disabilities of their children exposed some of their own idols and taught them the value of the greatest commandment. As Andrew observes, “I love my kids most not by loving them the most but by first loving God.” They are a couple with extraordinary needs trying to learn to live with authentic gratitude to their Maker:
If what you think you have is greater than what you think you deserve, then that’s where thankfulness comes from. If what you think you deserve is greater than what you think you have, then that’s where bitterness comes from.
This isn’t easy. Ask Christian parents of a special-needs kid and they’ll tell you how all the temptations to sin as a parent are still there, just intensified. For instance, every parent gets tired, but when those short nights and long days stretch into months and years, a parent can lose hope. As the Wilsons elaborate:
It is the day-to-day challenges that you don’t remember, which are thoroughly unremarkable and which require no special mention, that are undoubtedly the hardest—the daily grind of early mornings, dressing your children, repeating instructions more times than you can count, trying to remain calm as they insist on buckling their own seatbelt and take 10 frustrating and tearful minutes to do it, collapsing in an exhausted heap at the end of the day. Crises are horrible, but they don’t last. Normality, meanwhile, rumbles on. . . . In our case, the most draining day-to-day reality is the lack of sleep. When people ask how they can pray for us or what would make life easier for us, sleep is almost always the thing we talk about first.
Isn’t it here where the church of Jesus can serve parents like the Wilsons with long respites, free childcare, fresh encouragement from the Word, or just taking the kids for a walk so Mom can catch a quick nap? We tend to look for big institutional, sweeping ministries to “take care of those people.” But our churches already have all the resources we need to care well for “those people.” All we need is a loving, interested, and humble group of friends who will take the time to ask, “How can we help?”
When you consider that close to 20 percent of the world’s population is disabled in some form, you realize how much we need The Life We Never Expected. Because God has such a heart for the destitute and marginalized, we need parents like the Wilsons telling us what that life is like, since so many churchgoing parents of disabled kids simply give up attending services. When life is already deeply draining, it’s easy to lose heart, especially if the church doesn’t try to understand or suggests your kid isn’t really welcome.
Courageous Writing, Compassionate Walking
I’d perhaps challenge the Wilsons on a few issues, but I’m hesitant to do so here. It takes a lot of courage to write a book on parenting special-needs children when you’re smack dab in the middle of it. The Wilsons do this remarkably well, and in so doing have served the church.
Whether you’re a pastor or a compassionate church member, I’d urge you to buy The Life We Never Expected and walk in their shoes a little. It will not only help you love those with disabilities, it will help you love your entire church and praise God for his all-sufficient grace.