Made in His Image, part 2

The Diagnosis 

Before I answer this lady’s question, let me continue with a bit more about our son. After we visited with the cardiologist, we met with several other specialists for a variety of other reasons—a GI nurse because he was diagnosed as “failure to thrive”; an urologist because he had several urinary tract infections, an endocrinologist, radiologist . . . I once calculated that of the 45 disciplines that our local children’s hospital featured, we had been to over a quarter of them within the first nine months of Buddy’s life. In fact, when we requested his medical records when he turned three, they sent them on a CD-ROM because there were over 500 pages of records on him.

When Buddy was nine months old, we visited with a geneticist, who did some blood tests to find out if there was an underlying condition that would explain all the problems he’d been having. The geneticist diagnosed our son with a rare genetic disorder called Williams syndrome. Williams syndrome is caused by a deletion of about 25 genes on the seventh chromosome and can lead to physical and cognitive disabilities. With this particular syndrome, the mutation is, in medical jargon, “spontaneous”—meaning that neither my husband nor I are carriers of the disorder.

With this diagnosis, our lives took a sudden detour from the path we thought we were traveling. In the few seconds it took for the geneticist to say, “Yes, he has Williams syndrome,” we went from being parents of a potential NFL running back to being parents of a child with special needs—a child with potentially life-threatening physical problems, developmental delays, and learning disabilities.

How many of you have experienced a diagnosis like this? Whether yourself or your child or a family member or friend? I expect that we’ve all been exposed to some type of disability at some point in our lives.

Those of you who have received such a diagnosis know how it feels to be told you are not on the path of life you thought you were on. In a very real way, you go through a grieving process as you mourn the loss of the child you thought you had and come to grips with the child you now have.

Someone compared the experience to planning a trip. Having a baby is like planning a trip to Italy. You spend months and months deciding what you’ll see, where you’ll go, which places you’ll visit. You research the Sistine chapel, the canals of Venice, the leaning tower of Pisa. And you can’t wait to get there. But when you arrive, the airline attendant says, “Welcome to Holland!” Holland? But I was supposed to go to Italy. I didn’t plan for Holland. But you’ve landed in Holland and there you must stay.

The diagnosis left us reeling. We began thinking of his future in a different way—would he struggle to learn? Would he be teased for being different? Would he be able to drive a car? Get a job? Have meaningful relationships? Would he be in our care for the rest of his life?

But one thing the diagnosis didn’t do was cause us to doubt God or His goodness. I say this, not to pat ourselves on the back, but instead to credit our parents and those in our past who taught us who God is and why life doesn’t always turn out the way we expect it to. We shouldn’t wait until times of crisis come to develop a proper understanding of our God. We should be cultivating it throughout our lives and throughout the lives of our children and those in our care.

As you can imagine, we began researching all things pertaining to Williams syndrome. And thanks to the blessings of social networking, we’ve been able to make “friends” with other Williams syndrome parents and learn from those who have walked where we are currently walking. In trying to understand how things like genetic disorders fit into a Christian worldview, one of those parents, a Christian herself, posed this question, “Did God create Williams syndrome?”

Or, to return to the question asked before, “This is a problem I have wondered about—how physically imperfect newborns can be admired as "the handiwork of God," because it casts such doubt on God.”

It’s a valid question. As Christians who embrace a life-affirming worldview, we often discuss how beautifully designed the human body is—a masterpiece of God’s creation. We know that we are “fearfully and wonderfully” made. So how does a child with a genetic disorder (or any “problem”) fit into this worldview? How do we reconcile the goodness of God with what is happening in our lives?

Let me walk you through how I answered these questions in our situation.


Part 1, Part 2, Part 3, Part 4, Part 5, Part 6, Part 7, Part 8, Part 9, Part 10, Part 11