A Personal Story - A Dad Confronts Down syndrome

Not a judgment, but a job!

Reflections from the dad of a nine-year-old boy with Down syndrome

Daniel W. Martin, September, 2009

In January of 2000, our youngest son Gabe was born. Two days later, his pediatrician informed us that she believed he had Down syndrome, and that she had ordered a karyotype to confirm. I was stunned. I searched for other reasons for each of the traits our doctor had pointed out, willing myself to believe that there was some mistake, and that when the results came back it would all be over. Together with my wife Janine, I grieved and wept as we told ourselves it would be all right, though secretly we each suspected it would not be. I don’t know if I have ever sobbed as deeply and uncontrollably in my life, as I did the first time I actually said out loud, to a family member on the phone, “they think Gabe may have Down’s.”

An awful lot of that grief was for myself. As the reality settled in—confirmed by the blood test—I feared Janine and I would never get to live or travel alone together, ever again. I worried that we would be saddled with a perpetual invalid who would require our constant care and attention. I pitied (as I saw him then) the poor child with the “broken brain” in my arms, pleading with God that, if he never accomplished anything else, Gabe would at least be able to know he was loved.

I was also mightily angry with God. I suspected that somehow, this burden had come to us because I was being taught some lesson. . .not so much as a punishment for anything I had done or been, but that somehow Gabe’s misfortune was God’s way of breaking through to me on something (I never really was sure what). And I was outraged that God would hurt my baby in order to get to me.

In other words, I had no clue.

The nine-year-old Gabe I know today bears not the slightest resemblance to the invalid vegetable of my early, dark vision. Not only does he know he is loved, he expresses his own love with infectious enthusiasm. Just tonight, when I drove into the garage, Gabe met me at the car door, greeted me with a warm embrace, and then led me into the kitchen, shouting to the rest of the family “Hey guys! My Daddy’s home!”

Gabe is known and beloved throughout our circle of friends: at school, where he is included in a third-grade class with a teacher who specifically requested him; at church, where he probably knows more of the congregation than I do; and in our extended family, who adore him. I know of at least two or three young adults who have chosen to study some form of special education or therapy in college, at least in part due to their experience with Gabe. He has shattered stereotypes of mental disability for more people than I can name.

What of my anger at God? Well, at some point in my struggles, it occurred to me that maybe this wasn’t about me at all. I envisioned that there was a purpose for Gabe to fulfill—something that he couldn’t do if he were “normal.” I realized that God had offered me, not a judgment, but an assignment. My job was—and is—to prepare Gabe for his job. It lay to me only to accept the challenge and get to work. It dawned on me that really, this was no different than my responsibility with my “typical” kids. The specifics might vary, but the basic needs and roles were the same. As I internalized this truth, my anger abated.

I have learned a few lessons, though. I’ve become a more compassionate man than I ever was before. I’ve learned to look for the pain and struggle behind other parents’ issues, and I’ve reached out to some of them that I might never have connected with under “normal” circumstances. I’ve learned the vital importance of a network of friends who care enough to share the load. For me, that network has been our family and our church; for others it might be other groups, but I can say without reservation that parents who try to negotiate these waters alone are at a severe disadvantage.

I’d be lying if I said raising a child with Down syndrome—even a high-functioning child—is easy. It’s not. Come to think of it, though, raising any child is no walk in the park. All children, regardless of their abilities, also have their challenges, and they challenge their parents. Nevertheless, I have a richer family, and I am a better man, because of my son Gabe. I love that little rascal. My job’s far from done, but I can tell you that so far, it’s been a rewarding one.