The Life We Never Expected

I was wiping down high chairs for the millionth time when the call came through. The day felt normal, typical of the blur of other days that had gone before and would come after, but it wasn’t a normal day.

The developmental psychologist my son Zeke had seen was on the line. She wanted to go over the results of his recent brain MRI. Her voice sounded encouraging but she wanted us to come in to view the results in person. I put the kids down for a nap and attempted a quick shower to make myself look less disheveled than I felt. I didn’t know much about the new world I was about to enter, but I did know this—having to go into a doctor’s office for test results is never a good sign.

She handed us a report where the only words I recognized felt like gut punches. Catastrophic. Atrophy. Damage. Severe. My late night Google searches hadn’t prepared me for this conversation. In hindsight, I’m not sure anything could have.

She projected an image of my child’s brain on the screen. I had only a high school level understanding of anatomy but didn’t need more to identify why she was concerned. I bit my lip but my eyes betrayed me and dripped tears on my son’s head. I held him tighter, trying to shield him from the diagnosis and hard things being spoken over his life. Like all parents, though, I couldn’t and can’t protect him from difficulties.

She asked if we had questions. I had a million but words for none. She talked about medication, a list of new appointments, and a blur of things about Cerebral Palsy I don’t remember. We walked out and got in the car. My husband grabbed my hand and we drove home in silence.

In a recent podcast, Keith Simon and Patrick Miller shared five reasons to read including this one—books can become mentors. While having a person in the flesh who has experienced what we are living is ideal, sometimes it’s not easily accessible. In that moment, my life and parenting journey felt foreign to most of the people around me and so I did what I’ve always done, I tried to find books. More specifically, I tried to find books that gave words not just to my experience but to who God is in the midst of it.

To be honest, there aren’t very many resources that do both of these things that I would recommend which is why The Life We Never Expected: Hopeful Reflections on the Challenges of Parenting Children with Special Needs by Andrew and Rachel Wilson has meant so much to me. The Wilsons lead a church in England and have two children with autism. I’ve never met them and likely never will this side of heaven, but through words written an ocean away, they have become mentors.

The book is broken down into five cycles of short reflections. The authors share lament and laughter, hopes and fears and what they describe as, “a mixture of our story and God’s story, and the way in which his shapes ours.” Combining raw personal stories with theological depth, they tackle topics like the unresolved “why,” suffering, entitlement, marital strain, how to think about prayers for healing, rest, sacrifice, eternity, living in survival mode, and more.

While reading, I found myself weeping often not (usually) out of sadness but out of feeling understood. It felt like having coffee with friends one step ahead of me in a process few understand so personally. Their words are helping me figure out what it means to grieve, to worship, to embrace the unexpected given by a God who is for us and with us in the midst of never-ending therapy appointments, orthotics fittings, surgical waiting rooms, insurance headaches, and an uncertain future that might not include an empty nest.

This book is for more than just other parents of children with special needs, though. It’s a book all in the church could benefit from as we consider the perspective of those whose family and life might look different than their own experience. It’s a book that highlights the Imago Dei and the God-given inherit dignity and worth of every person. It’s a book that I think might give us eyes to see, love, and care for all of our neighbors the way that Jesus did. It’s a book that I think helps us better understand and live in his upside down Kingdom, a place that includes deep joy but also, deep lament.

If you need additional reasons to read The Life We Never Expected, here are a few short excerpts.

“We worship a crying God—a God who became like us, suffered bereavement and loss, wept at gravesides, and cried out in anguish as he died. So when we experience suffering and face all the unanswered whys, we may never know what the answer is—but we know for sure what the answer isn’t. It isn’t because God doesn’t love us. It isn’t because God doesn’t care. It isn’t because he is distant or unsympathetic or cold or merciless. The Lion has tears in his eyes, and although I will never understand all that he’s doing, I know that he isn’t doing it because he doesn’t love me. The cross proves that.” (p. 80-81)

“The one-off challenges are the ones you remember: diagnosis, seizures, hospital admissions, unusually spectacular meltdowns, and so on. Something especially bad happens, you hit a new low, and you cry out for help from your friends and family, who rally around to help in a short, intense, and irreplaceable way. But 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 ten 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.” (p. 63)

“We’re designed to search for reason in the seemingly senseless events that torpedo our lives, and we want to make sense of them as soon as they happen. So we set up support groups. We volunteer for charities. We raise awareness. We start foundations, we hold fund-raisers, and we cook things and make things and write things…We strive daily to make sense of the senseless, so that the pain we’ve experienced will not be in vain. In other words, we write our own happy ending. But we are not the storyteller. We don’t have the power to resolve the twisted plot and bring triumph out of tragedy. Only God does. And his timing is often very different from ours…So I have to remember the story is not mine to save. The pressure to write a story that makes sense of what has happened to us must be resisted; God is the great storyteller, the divine happy-ending maker, and I’m not….My parenting life may be a continual journey of struggling, learning, praying, crying, laughing, loving, and trusting with no dramatic resolution and no end in sight. But that’s why I cling to the Storyteller, and his unbreakable promise to put the world right. In the end, he redeems it all.” (p. 88-89)


  1. Judy Sheppard said:

    Everyone, especially believers, should read this article. Inspirational and so biblically accurate. God is good.

  2. Robb Bong said:

    Thank-you for this message. I work with a man who has two autistic children and shares these same struggles, fears, and pain. I am giving him a copy of this book as a resource to speak to him and his wife. Thanks again and my prayers are offered up to you and your family.

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