Our understanding of children with special needs (which involves a wide range of developmental or genetic challenges such as autism spectrum disorder, Down’s syndrome, ADHD, disabilities etc) is still growing across the world. This is probably why there have not been many books reflecting on the experience from a Christian perspective. The dearth of books is even worse in Africa. We lack solid general biblical titles, not to mention Christian books which specifically address living with disability.
So, I was thrilled to discover this helpful reflection from the Wilsons, a Christian couple living in London. The Life We Never Expected speaks straight to the heart of disability and the theological truths that transform and inform our parenting of special needs children.
Discerning a Special Needs Diagnosis
Andrew Wilson writes about his agonising experience when he realised his daughter might also be autistic (this was some years after his son had already been diagnosed):
The Life We Never Expected
Andrew and Rachel Wilson
The Life We Never Expected
Andrew and Rachel Wilson
Sometimes life throws you a curveball.
Andrew and Rachel Wilson know what it means to live a life they never expected. As the parents of two children with special needs, their story mingles deep pain with deep joy in unexpected places. With raw honesty, they share about the challenges they face on a daily basis―all the while teaching what it means to weep, worship, wait, and hope in the Lord. Offering encouragement rooted in God’s Word, this book will help you cling to Jesus and fight for joy when faced with a life you never expected.
“I was overwhelmed by the most sweeping, drowning sense of pain and anguish I had ever experienced. I 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.”
This brings to mind how my wife and I came to the semi-official awareness that ‘something’ was wrong with our son, Daniel. We had just changed his school and the School Head called us in to discuss their observations. He was approaching 3 years at the time. Up until that time, he had a very limited vocabulary, made little to no eye contact and did not interact with anyone beyond keeping to his normal daily routine.
His former school had no clue something was wrong. We felt at the time it was just a delay in his development and that he would eventually come around.
Several months later after numerous tests, scans, and consultations, he was diagnosed with mild autism and attention-deficit hyperactivity disorder (ADHD). From that point our pressing need has been to better understand what this means for him, for the family and how to navigate this reality.
Faced with Disappointment
The Life We Never Expected does a good job of being realistic about the disappointment of having a child with special needs. Nothing prepares you for it.
One moment you are rejoicing that you are now a parent – with all kinds of expectations that this child will call you ‘Papa’ every day, you will teach him all you know and encourage him every step of the way as he competes with peers. The next moment you are not so sure how this all will play out.
As parents facing a diagnosis we were faced with “the death of our dreams, one by one.”
You are forced to come to terms with the reality expressed so well by the authors, “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.”
As parents facing such a diagnosis we were also faced with “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.”
Embracing the Special Needs Diagnosis by Faith
Having acknowledged this reality, what should we do? This is not an easy question. For it is a condition you are still trying to process and understand. Each child and family will experience this differently.
Nevertheless, Andrew and Rachel Wilson have offered some steps which every Christian family will find essential as they navigate this journey. By God’s grace, this book helps us in handling this experience with faith without sinking into despair.
Remember God is Sovereign Even Over What We Don’t Understand
The first question that confronts one after a diagnosis is ‘Why?’ Interestingly, this is not a unique question. As Andrew Wilson points out, the universal response has been that we simply don’t know: “When tragedy strikes, almost everyone who believes in God, along with almost everyone who claims they don’t, asks the same question: Why does God allow suffering?”
We see in the gospel a God who, while not giving us clear-cut answers about why we are suffering, does enter into it with us (Hebrews 4:15). And he assures us that we will never be abandoned (Hebrews 13:5; Matthew 28:20).
Accept Your Calling in This Unique Mission Field
Parenting a child with special needs requires energy, sacrifice, and patience. You often have to hold yourself back from lashing out in frustration. As the authors remind us, we must see it as a mission field, though a special one. Much emotional, physical and mental energy will be spent, but it must not be seen as effort better spent elsewhere. It is simply where God has called us to serve. And as with the woman of Bethany (Luke 7:36-50), it is an expense that Jesus finds precious.
Whether it is the unseen and unvoiced tears of being misunderstood or frustrated, the new world will be free of both.
“God wants us to esteem the field he’s given us. It’s not a tiring distraction from the true mission field we should be tilling; these are our people for us to reach and for us to be trained and transformed as we do.”
As we engage all the help and support we can find, enlist the assistance of relatives and friends, invest in resources and tools as needed and as are affordable, we must do so with a missional mindset. God has called us to this. And he goes along with us every step of the way.
The Hope of the Gospel will Help us Rejoice in Spite of our Pain
As Paul reminds us, “If in this life only we have hope in Christ, we are of all men most miserable” (1 Corinthians 15:19). There is a future where there will be no need for special needs parenting. There will be no children with special needs. It is a world in which all tears will be wiped away (Revelations 21:4).
Whether it is the unseen and unvoiced tears of being misunderstood, or the hidden tears of a frustrated mother who does not know how to go on, the new world will be free of both.
And as we go along on that journey, God does not leave us with only glimpses of future glory. We can look at every detail of our lives from an angle of thanksgiving. And then, even our very challenges take on a new perspective.
If we believe the Biblical truth that we have all sinned and come short of God’s glory, then we know that every single thing we have is a blessing. And this is what a grasp of grace fosters: “Grace, by revealing how much I have and how little I deserve, helps bring me to a place of humility and thankfulness.”
Cultivate a life of prayer which anchors our lives on God’s wisdom.
A Heart of Thankfulness
So there may be a lot my son cannot do. But there is a lot he can do. I can be grateful that he can walk, run, play, and jump around on his own. He can read several simple words (and this is still growing). He can do arithmetic sums and recite some of the multiplication tables. When prompted, he can tell you his name and say many other things. He generally sleeps and eats well; he also co-operates well in bathing and cleaning up.
As the authors say, “By choosing to celebrate how much I have and deciding to remind myself how little I deserve, I can sever the root of bitterness and give thankfulness for the soil it needs in order to flourish, both at the same time.”
Further, James reminds us to rejoice when we encounter various trials (James 1:2-4). Because the testing of our faith makes us steadfast. And the experience of parenting a special needs child is itself a trial. So like in all trials, God can work through it to produce patience, courage, and character in us for his glory.
A Life We Never Expected, but Nevertheless Glorious
The book is a great reminder that we should lament the unpleasant reality we are faced with. However, we also should accept our unique calling and depend on God to help us navigate the journey. We should be grateful to receive the help he provides through therapy, support groups, etc. And lastly, cultivate a life of prayer which anchors our lives on God’s wisdom.
So, while it was not a life we (or any other parent) expected, through God’s grace we can find it to be one he intended. A life that is written for our good and his glory.