Andrew and Rachel Wilson begin their short but powerful book, The Life We Never Expected: Hopeful Reflections on the Challenges of Parenting Children with Special Needs in an arresting way: “This is a book about surviving, and thriving, spiritually when something goes horribly wrong.” Their somethings are two children, apparently normal at birth, who developed regressive autism, losing over time their ability to do the ­normal things that children do. The Wilsons invite readers into the messy reality of their lives, their exhaustion, and the strains on their marriage. They paint a picture of difficult yet delightful children. And they show how they make sense of their lives in the light of Christ. The book—WORLD’s 2016 Book of the Year in the Accessible Theology category—­carries the reader through cycles of weeping, worshipping, waiting, and witnessing. It’s theologically rich and full of hope that in the face of many unknowns “the future will include the grace, blessing, and goodness of God.” Below we offer two chapters from the book, one from Rachel and one from Andrew, courtesy of Crossway. —Susan Olasky

The Day of Deep Breaths

Rachel

Some days require a lot of deep breaths. That’s true for every parent, but my guess is that it’s intensified when you have children with special needs. For me, Thursday, August 4, 2013, was one of those days. Remembering it, even months later, brings on a weird combination of shudders, tears, and giggles.

We’re on vacation, but it’s an early start anyway. Zeke wakes at 4:30 a.m., and Andrew starts the day with him. (Vacations with our children are usually more exhausting than normal life, partly because the kids have their sleep routines messed up by being in a new place—in this case, a house belonging to friends who are away on vacation—and partly because the normal support, from school, nursery, parents, and friends, isn’t there.) After an hour or so, Anna is up, the first DVD of the day is nearly finished, and breakfast is about to get started: Cheerios with milk for Anna, dry Weetabix (yes, I know) for Zeke. So far, so good.

Then Andrew wakes me up to tell me he’s just vomited.

This happens sometimes, obviously. Men get sick. I suspect men who have been tired for two years get sick more often than most, and those surrounded by the kind of antics I’m about to describe get sick more often still. But this is now round three of the second sick bug of the summer holidays—as in, Anna, then Zeke, then a two-week break when nobody is sick, then Anna, then Zeke, and now Andrew—and I’m beginning to find it annoying. I stare at him in dismay, hoping he’s joking. He isn’t.

I take a deep breath, get up, and go downstairs.

My appearance somehow makes it a matter of intense urgency that the Oliver and Company DVD case be found and handed to Zeke. We’ve now gotten used to the randomness of Zeke’s obsessions, but it can still be wearing—the Oliver and Company DVD case, not the DVD itself, and certainly (God forbid) not the video; the branded cover inside but removable; the location of the case in Zeke’s carefully laid-out line of twenty other cases; the explosive reaction to any interference with said line, especially from his sister; the unique and often incomprehensible words that summon the case to be brought (“Hoffer and Pumpnee! Hoffer and Pumpnee!”); the bouncing up and down and hand flapping that follow its arrival; and the rest. Knowing that a no will cause an outburst but a yes will cause repetitive behaviors for several hours, and it’s still only 6:15 a.m., I deny the request. Zeke repeats it. I deny it. (Bargaining at this stage is pointless.) Zeke repeats it. I deny it. Repeat eleven times. The inevitable outburst comes.

I take another deep breath.

After a few minutes of successfully engaging Zeke in a “normal” activity—sorting his cases, pulling the dog’s ears, or some equivalent—it occurs to me that Anna has been in the living room for a while but that things have gone suspiciously quiet. I walk down the hall to investigate. On entering the living room, I find Anna with her face submerged in the open-lidded fish tank, happily blowing bubbles into the water, while floating fish flakes bob about on the surface and bewildered guppies swim around her cheeks in confusion. I knew that Anna loved the sensory experience of face dipping, having done it all summer with paddling pools and occasionally even sandpits, but it never occurred to me that she would do it in something so aromatically unpleasant and manifestly dirty as a fish tank. No wonder everybody in this family gets sick so often, I muse to myself. Another deep breath. For a moment, I wonder if it’s worth grabbing a camera but decide instead to retrieve my three-year-old from the tropical waters and then set about drying the walls.

I return to the kitchen. Zeke, who had been happily rummaging through his cases, has somehow managed to slide a carving knife off the countertop and is running around the kitchen with it, whooping with delight. Another deep breath. At this point I have some difficult choices to make. Anna is dripping wet, and Zeke is at serious risk of either slicing his forearm or beheading the dog. Yet I know from experience that either shouting at him or running toward him to retrieve the knife will make him think we’re playing a game and run away laughing, and that will instantly make matters much worse. So I amble nonchalantly toward him, with my body language saying, This isn’t a life-or-death thing; it’s no big deal, while my mind is racing with the thought, This might be a life-or-death thing, and it’s a very big deal. Remarkably, it works. I retrieve the knife, put all the other knives out of reach, and head upstairs to get Anna into some dry clothes.

A few minutes later, more suspiciously quiet behavior, this time from Zeke, leads me back downstairs to the hallway, where I find the front door now wide open. I run out into the road in a panic, looking up and down the street for him, and then notice that he is sitting behind the car in the driveway playing with stones. Another deep breath. I take him back inside and double-lock the front door. The next few minutes pass without incident, and I manage to finish packing lunches, pile the kids into the car, and head off to a nearby adventure farm, where we arrive just as it opens in order to avoid Anna’s greatest enemy: other people.

All things considered, the farm trip is a success. The children cope, the meltdowns are limited, and although I’m on my own with them, nobody dies. But there are still a few incidents. The jumping cushion is surrounded by the shavings of recycled car tires, which are perfect for Zeke to sit there and chew while he decides whether he feels like jumping or not. Anna, who is mid-regression at this point, marches onto it with confidence and starts bouncing, but then another child makes physical contact with her, and she withdraws into shutdown mode, refusing to make eye contact, speak, or play for the rest of the morning. We go on a beautiful tractor ride: Zeke loves it and shrieks throughout, not because of the animals but because of the enormous rotating tires, but Anna buries her face in my shoulder and notices nothing. I carry her for the next two hours and reflect on the fact that, for all the face dipping, vomiting, front-door opening, and carving-knife waving my day has involved, much the hardest part of it is to fight the tears when I think of how my little girl has gone backward in the space of a year, from a chatty little person who plays and sings to a frightened baby who has lost nearly all her vocabulary and most of her social skills. Another deep, painful breath. I change her diaper, trying to give her a little privacy behind some play equipment, and while I’m there, Zeke obstructs the slide for the many other children who have now arrived, causing frustrated parents to look around for a responsible adult. It’s tempting to pretend it isn’t me.

Before heading home, we enjoy a picnic lunch, and the kids are peaceful and settled. While they’re eating, I phone the hospital for the third time to hunt down a pair of reinforced Piedro boots1 for Zeke, which no hospital department seems to be taking responsibility for losing, and check my messages to see if the latest blood test results for Anna are back, which they aren’t. Another deep breath. On the way home, I think about buying milk, but since I can’t take the kids into a shop on my own without—well, by now you can probably imagine—I decide that tea with soy milk isn’t so bad after all, and we go home without any dairy. I make sure to double-lock the front door when we get inside, check that the fish have survived their close Anna encounter earlier in the day, and then all but cover the tank with plastic wrap to make sure it doesn’t happen again. I put on a DVD for the children and take one more deep breath.

One day, I say to myself, I’m going to laugh about this. I may even write a book about it.

Lament

Andrew

Up until I was about thirty, I couldn’t fathom why so many of the psalms were about pain. Now I’m thirty-five, and I can’t fathom why so many of them are about something else.

Lamenting is a lost art, at least in Britain. In many cultures, when someone dies, those who have experienced loss are expected to process their pain loudly, corporately, articulately, publicly, and perhaps musically: a noisy, guttural, wet, salty lament is widely acknowledged to be the best way to handle the emotion of the moment. In my culture, on the other hand, we weep in private as a family, reflect on happy times, put a good face on things, have measured discussions with funeral directors, tell our friends that we’re going to be okay, and then go about arranging a “celebration service” (which must under no circumstances give the impression that anybody is sad about anything). Instead of letting the emotion out, we hold it in, push it down, and often find, a few months or even years later, that we haven’t really dealt with it at all.

That’s why lament is so valuable, and that’s why so many psalms in the Scriptures show us how to do it (not to mention Lamentations and Job, which add a huge amount more material). There’s something about expressing what we feel in words and music that helps us to come to terms with it and to take it before God in anguished prayer. Christians, in particular, can feel like we ought not to vent our emotions at God; we prefer tidy prayers like “God, we don’t understand, but we trust you” to the chaotic, confused, howling prayers we find in the Psalms. But those songs are in the Bible because we are supposed to express ourselves that way. “How long, O Lord? Will you forget us forever? What are you doing? Can’t you see we’re in agony down here, banging our fists against our tear-soaked pillows and eating dust for dinner? If you ever loved us, O God, come and fix things! Now!” If God is big enough to be worth yelling at about your situation, he is big enough to take your pain, hear your lament, and somehow use it to comfort you in the confusion.

And so it was, in November 2012, that I found myself lying on our playroom floor, in the fetal position, sobbing uncontrollably. (I have always had a taste for the theatrical.) For a year, we had been dealing with the fact that Zeke was quite severely autistic and all that this meant: flapping, humming, and repetitive behavior; losing dozens of skills he had gained; going to special school rather than mainstream school. We were coming to grips with the fact that, barring a miracle, he would never take an exam, drive a car, leave home, or get married. The biggest loss had been the death of our dreams, one by one—the myriad of little daydreams you have about being a parent, from sports days to holidays, graduation days to wedding days—but we had consoled ourselves with the thought that we would at least have those things with Anna, even if we wouldn’t with Zeke. It was a small comfort at the time, but it was the best we had.

Then we began to notice that something was wrong with Anna too. Initially, it was a few little things: playing with the sand for longer than normal, performing the same motion repeatedly and being intrigued by it, humming gently to herself as she played outside in the late summer. But as the autumn kicked in, it became clear that things were getting worse, and rapidly. She lost the ability to sing. She lost the ability to form sentences and to string words together. She stopped making eye contact with almost everyone. She got more and more upset about other people being around. One day, she literally woke up and could no longer make star shapes with her hands. Floundering in denial, I refused to believe that it was happening again and insisted to Rachel that Anna was imitating Zeke, rather than experiencing regression herself. And then one day, just after returning from a trip during which I had seen my friend have a very normal Skype conversation with his two-year-old son, I walked into the kitchen, saw Anna flapping and humming—exactly like Zeke had done for the past year or so, only (if anything) worse—and it suddenly hit me. I 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.

Lament is more than crying, of course, although it is certainly not less. It also involves putting into words the depth of feeling and sadness we’re experiencing: in prayer, in a journal, in a song, or whatever. Doing this forces us to give due weight to our emotions, which many of us (particularly the English among us) are not always very good at; articulating them carefully helps us understand them, as well as handle them wisely. But it also forces us to take our pain to God, first and foremost, before we take it to other people. Lament, you see, is about bringing your sorrows to God, in painful description, petition, and confusion, and throwing all your doubts and questions at him. Rushing to dump them on friends, on family, or on Facebook, without having gone to God with them first, is not lamenting but venting, and in the long run it doesn’t do nearly so much good. With the best will in the world, people aren’t big enough to absorb your grief. God is.

Not all of us will find this easy. In fact, very few of us will. Writing poems about sadness or songs that never leave the key of D minor feels unnatural to most of us, since the society we live in spends most of its time avoiding pain at all costs and is emotionally unprepared to cope with the waves of grief that sometimes crash across our lives. It will feel tempting to jump to the chorus or to launch straight into a don’t-worry-be-happy routine, but it is important to give the sorrow a voice, even when it seems strange or self-indulgent. If you’re stuck for ideas, read Lamentations.

As someone who has done his fair share of crying and lamenting over the last couple of years, let me conclude with a couple of encouragements. The first is, lament does help. Whether you’re wired like me, whereby hysterical crying brings an emotional release that quickly makes you feel much better, or wired like Rachel, whereby you deal with sadness in a slower and more drawn-out way, lament—crying, writing, praying, or singing it— helps you handle it. And the second is, it gets easier. I have never experienced depths like those I felt in November 2012, and perhaps I never will; all the familiar clichés about time healing and grief passing do seem through experience to be true. So if you’re mired in despair at the moment, wondering how you’re going to get through the week, let alone the year, it’s worth bearing in mind that, in all probability, it won’t always be like this. The old dreams die, but new ones form. The clouds close in, but the sun finds a way, eventually, of breaking through.

Content taken from The Life We Never Expected by Andrew and Rachel Wilson, ©2016. Used by permission of Crossway, a publishing ministry of Good News Publishers, Wheaton, Il 60187, www.crossway.org.

ENDNOTE ______________

1. Piedro® boots are orthotic shoes designed for children with disabilities or children who require extra arch or ankle support.