Living with Down Syndrome

Today is 3/21 which celebrates those with Down syndrome. The significance of 3/21 is the fact that Down syndrome is a condition where a person is born with a third (3) copy of the twenty-first (21) chromosome. Down syndrome is properly known as Trisomy-21. My son Cooper has Down syndrome. Cooper is now 7 years old, which is hard for me to believe. And, along the way I have been changed. In many ways, God has used this child with “special needs” to forge much needed change in my life and character. These changes did not always come easy. And I’m sure there are many more ahead. However, I can say with confidence (and a little fear that the work isn’t finished) that i’m grateful for how God has used Cooper to change me.  

1. I've grown to trust God more.
Sure, i’m a pastor and should trust God anyway! But let’s get real…when a child with special needs is dropped into your life you really start to question the plan of God. Initially I wanted this to be a mistake. I wanted God’s plan for this “special child” to really be for someone else. However, over the years I realized that despite the difficulties I could not imagine life without him. I’ve been forced to surrender more and more of my life and agenda to God. It is likely Cooper will live with us for the rest of his life. What about those dreams of an empty nest with my wife? Yet, another question that i must lay at God’s feet and trust Him with. I don’t always like it, but I know that a growing trust in God is better than believing the lie that I have everything under control. 

2. My capacity has grown.
Having a child with any special need introduces you to a world of experiences that stretch you well beyond what you thought were possible. I say this not to complain but to offer a realistic picture of our lives, things are harder with Cooper. We joke at home that he’s the equivalent of two kids! Cooper likes to run away, making basically every outing harder. Cooper can’t talk very well which means if he’s hurt or wants something we basically have to play charades to figure it out. He gets sick a little easier than our other kids which usually means Wrestle Mania 4 just to get antibiotics in his mouth. He’s seven years old and not fully potty trained…need I explain? On top of it all, Cooper is just one of five kids in our family. All these little things add up and often push me to my limit or beyond and here’s what i’ve discovered…we’re alive. We are hanging in there and usually having fun. Life isn’t so bad. And by God’s grace, we’re handling it.  

3. I’m learning what Love really means. 
I’ll be the first to tell you that love is so much more than an emotion. Love is a choice. However, that choice isn’t always easy. Cooper, like most people with “special needs” requires more. When we give more we learn what love really means. Love is not talk. Love is not a warm fuzzy feeling. Love is begging God with every fiber of your being to bring your child through heart surgery. Love is night after night, week after week, on a hospital couch by his side. Love is watching friends, family and even perfect strangers go out of their way to bless your son because somehow he stirred up compassion in their hearts. Love is knowing that you would give you life in a heartbeat for a child that in many cases would be abandoned or aborted. Love is forgetting about the syndrome, special need, condition, diagnosis, or illness and seeing your child as a priceless gift from God. 

Nearly everyday a mom or dad gets hears that dreaded news, like we did, that they have a child with Down syndrome. We know that sinking feeling. We know that sense of loss. We know that fear that you won’t ever love this child like you would if he or she were “normal.” We get it. And one of my prayers is that God would allow our story to become hope in the ears of those moms and dads to embrace the journey God has them on. You don’t have to like it, agree with it or pretend that everything is ok, cause frankly it’s not. But, I assure you, you life is NOT over. It very well may just be getting started! 

Posted by Andy Savage at 9:31 PM
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