Article by: Laura Dilly
Parents, particularly those of children with special needs, are bombarded with how-to books and advice. But a book that addresses the parent’s heart is a rare find. Andrew and Rachel Wilson provide just that as they chronicle their emotional and spiritual story as their son, Zeke, and then daughter, Anna, are diagnosed with autism in The Life We Never Expected: Hopeful Reflections on the Challenges of Parenting Children with Special Needs [review] (Crossway, 2016).
The book reflects on the Wilsons’s honest heartaches and comical joys. Each short chapter illustrates how the their story fits within God’s larger redemptive story. The Life We Never Expected offers gospel truth parents can cling to during the long days of parenting kids with special needs. The balance of family vignettes and heart struggles are sure to resonant with all parents.
I asked the Wilsons what role lament plays in their parenting, how churches can better serve parents of children with special needs, how having a child with special needs can challenge a marriage, and more.
With Zeke and Anna’s diagnoses you’ve seen many of your expectations change or die, and you mourn those losses. “Lamenting is a lost art,” you write. What have you learned about the art of lament through your circumstances?
Probably the most challenging thing has been learning to acknowledge that something can be a wonderful gift from God, and yet at the same time be very, very sad. Our church culture doesn’t naturally encourage this way of thinking. Typically we’re good at celebrating, and at thanking God for gifts, but struggle to do what the Psalms do so well (and so frequently): pour out our hearts in lament and sadness, grieving and crying, while remaining committed to the truth that God is good and that redemption is coming. And the hardest thing is learning to do that—recognizing the sadness, while still rejoicing in the wonderful persons God has given us, and all the marvelous things they do and say that other children never would. Paul talked about being “sorrowful yet always rejoicing,” and as different as his situation was from ours, I imagine it felt a bit like this.
Since becoming parents of children with special needs, what lies sneak into your thinking most quickly and what gospel truths are most compelling?
For me (Andrew), the biggest lies have been those of entitlement. This shouldn’t have happened to us, or to them. It’s not fair. Other people have it better than us, and they shouldn’t. When you take a closer look at anyone’s life, of course, you realize everyone is handling things that are, in a sense, the life they never expected. But self-pity manages to inflate how good their lives are and how disappointing yours is. In response, I’ve needed to see the gospel of grace again: how little we deserve, and how much we have. But the most compelling gospel truths have probably been eschatological, which I think we’ll probably come to in a moment.
Self-pity manages to inflate how good others’ lives are and how disappointing yours is.
For me (Rachel) the easiest lies to fall prey to are those with a smidgen of truth. The first was probably “I can’t do this,” which also reveals a fair dose of pride (I so wanted to be the capable, independent all-singing, all-dancing mom). I tried claiming Philippians 4:13 as I ran between them at the park and lived on my nerves, occasionally relying on a member of the public to help. But the true test of “I can do all things through him who strengthens me” in my parenting life has been: Can I, through his strength, humbly and thankfully accept the help of the rest of the body of Christ, and perceive and receive his grace in the gifts of respite, meals, and support? He has definitely strengthened me, not through making me a superhero mom, but by opening my eyes to all the heroes around me.
What would you most like the church to understand about children and families with special needs? How can we better serve such families?
All of us are different. That’s the main thing. Which may sound very unhelpful, but it can actually lead to the most practical advice we have: Rather than assuming a particular thing is what a family, child, or parent needs, just ask them. What does your child like? What don’t they like? What helps? Is there anything I can do? Right now, what Zeke most likes is playing with children about three years younger than him; three years ago, he was terrified of other children, particularly those who might cry (or, at one painful stage, even laugh). Some autistic children love noise, eye contact, and physical touch; others hate it. Some parents need respite, some need practical help around the house, some need support on Sundays, some need sleep, and some might need nothing at all. So if you assume children with special needs like X, or parents most need Y, you’ll miss a huge swath of people. Far better just to ask, see what they say, and respond if you’re able.
You mention that having a child with special needs can challenge a marriage. How do you stay connected with one another and keep focused on Christ?
Ha! At the moment, to be honest, that has become much easier. Our children have improved—we even have a third child now, a baby named Samuel—and we get lots of time together, especially in the evenings. But at its worst, it was very difficult.
The main change we had to make (and this took Andrew, in particular, a while to come to terms with) was to lower our expectations of all sorts of areas in our lives, to make sure we used our limited capacity to focus on the things that really mattered. Ministry contracted dramatically. Evening commitments all but disappeared, to ensure he could get up early in the morning with the children. Our social lives diminished. Some of our parenting aspirations (for behavior, discipline, mealtimes, and so on) had to be jettisoned or at least radically reconfigured as no longer appropriate. Many of those things have since been reinstated, actually, but abandoning them at the time was extremely important in ensuring we stayed married—and Christians!
How has having Zeke and Anna in your life influenced your thinking of heaven?
We’ve spent a lot more time daydreaming about eternity, especially when things were at their lowest. My (Andrew’s) travels around the world have made me suspect that the more challenging peoples’ lives are, the more they talk and sing about the new creation; Westerners will often go for weeks without mentioning it, whereas those in poorer and more war-torn contexts will focus on it all the time. In our limited way, we’ve found that too.
We’ve spent a lot more time daydreaming about eternity. . . . The more challenging peoples’ lives are, the more they talk and sing about the new creation.
Sometimes we’d just sit in the evening and talk about it: one day our kids will be able to play a game, enjoy a meal, laugh along, talk about hopes for the future, and so on. (As I say, though, in Zeke’s case in particular a number of these things are already happening, which is beautiful.) Suffering, however trivial or acute, throws the Christian into eschatology. The brokenness of this world is a very good motive for reflecting on the unbrokenness, and unbreakability, of the next one.
Laura Dilly is a licensed psychologist who specializes in the assessment of children with developmental delays. She previously worked in the public schools. She is a member of Atlanta Westside Presbyterian Church in Atlanta, Georgia.