How 2 Strangers Showed Me the Error of Wanting ‘Perfect’ Kids

By the time Nicolas was about 2 years old, my hope that his diagnosis of a genetic disorder was somehow a mistake had dwindled. My dream that I would wake up one morning and he would speak, or crawl or do something “normal” was fading. I still had the faith, once in a blue moon, to pray for God to heal him.  But I was on my last straw with God, too.

Then one afternoon as I exited a training course,  the instructor asked me how Nicolas was doing. I guess because the course content was on counseling and eliciting honest responses, I couldn’t muster the usual “He’s fine!”  Rather, I complained that I was frustrated. Because the instructor also happened to be a pastor, I explained that my frustration was with God. I had grown tired of praying for Nicolas, and wasn’t sure what to do next. “I just want him to be perfect” was the exact quote I used to justify my despair.

The pastor then began to tell me a story about some friends. He had recently been to dinner with a couple whose teenage daughter has Down syndrome. He described how wonderful their family dynamic and quality of life was, and how they had told him at dinner: if they could go back and change their daughter’s diagnosis, they would not. The pastor then challenged me to consider that my son is already perfect, and that perhaps I’m the one who needs God’s touch.

Well imagine my outrage! I couldn’t even put into words what horrible people I judged those parents to be. Who would be so cruel as to not want their child to be perfect? To willfully accept the additional hardships and struggles that will follow their child her entire life, and actually refuse a change of course? I argued with those people I’d never met all afternoon. But they wouldn’t leave me.

By evening, I was physically exhausted from the mental and emotional battle I’d waged all day inside myself. It started out aimed at the mystery family, but ended up directed at God. Despite my protests to the contrary,  I couldn’t shake the distinct feeling that this was God’s message for me: stop begging Him to make my son perfect, and see that my son IS perfect. Shift my perspective.

In my fatigue,  I begrudgingly uttered this one small prayer: “God, if you want me to have the same stupid attitude as those other people, you are going to have to really change my heart and mind. I don’t understand, but if that’s what you want, you have a huge job ahead of you.”

That was the moment. I believed that I gave God permission to show me His perspective about His creation. Over the next few years, I began to have the filter of my own selfishness removed from my eyes, and was able to truly see my son, Nicolas, in all the splendor that I believe God intended for his life. My perspective was radically changed, and it affected every area of my life.

Nicolas is now 14 and he’s fantastic! He has impacted more lives for good than most people ever impact in a lifetime. He is special in every wonderful way possible. He is a unique treasure that has come with a cost, as all valuable treasure does.

I never knew the name of that couple, or their daughter. Never met them. But they are the ones who, by sharing their story with all who encountered them, changed the way I will forever see special needs. What would I say today, if given the opportunity to go back in time and change that diagnosis? Absolutely NOT.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.