What I Wish You Knew About My Child With Down Syndrome

Written by: Derek Smith

I still remember January 2017 when I was on a mission trip in India. My wife, Chrystal, was at home in Tennessee with our four other children by herself and highly pregnant. She had a routine doctor’s appointment before I left and everything seemed to be fine. 

One evening while on the mission trip, I heard the audible voice of God. I heard Him say, “Everything is going to be okay. I will be with you.” I was distraught at first, but quickly the peace of God came over my heart and I knew everything would be okay. I wasn’t sure what was about to happen, but I knew the Lord would sustain us through it. 

The very next morning my wife received a call from her OB-GYN, a good friend of ours (he has to be after he delivers three of your children!), and he said, “I have some news to share with you. We are pretty sure your baby boy has Down Syndrome.” Chrystal quickly called me and shared the news. I understood immediately what God meant. He would be with us. It was not going to be easy, but He would sustain us. 

Neither Chrystal nor I had ever dealt with special needs in our immediate families growing up, so this was all new and fearful for us. It was awkward watching people try to respond to the news. They didn’t know what to say. Some said, “I’m sorry.” (For what?) Others, “We’re praying for you.” (Is it that bad?) Some said: “It’s going to be fine.” (How do you know?) But it was the response of those with Down’s children that helped the most. From almost every Down’s family we talked to, the same words were shared, “He will be the greatest blessing of your life.” What a true statement. Cayson is the greatest blessing of our life as a family. Our lives today are so much better and so much more fulfilled because of him. 

I wish you could see the joy he has.

Many Down’s children have an exuberant joy that’s so uncommon and so refreshing. Cayson’s smile is infectious. When he laughs, everything stops and we all crack up. His personality lights up the room. His joy is born from an innocence that our “normal” children don’t carry simply because of their knowledge and experiences of life. He doesn’t have a care in the world, and doesn’t need one. He is perfectly happy just the way he is, with whomever he’s around, doing whatever they decide to do. 

I wish people knew how frustrating it is when they talk about his disadvantages or developmental delays.

We knew before he was born we would face challenges. What we don’t need is a reminder of that. I still remember the first visit we made to the Down Syndrome clinic at a local major hospital. The doctor, who really did mean well, spent the entire hour talking to us about what he would not be able to do or accomplish in life. Needless to say, we never went back to that doctor. Special needs families don’t need people to remind them of the inadequacies of their children. They need encouragers who will speak life and success into the lives of their children. We soon learned to surround ourselves with people who speak these things into him and us. 

I wish you could see the difference Cayson has made in our four other children.

They’re so good with him and this has put a tender place in their heart now for all people, no matter their insufficiencies in life. (We all have them, by the way.) Interruptions don’t bother them like they do other children because they’re used to accommodating their little brother. It has made them and us much less self-absorbed. This has also given them a real love for kids in general. They’re now quick to help watch and play with other children in the neighborhood because of the soft place Cayson has created in their hearts. They’re going to be better people, better leaders, better friends, better spouses, and better parents because of Cayson.

I really wish everyone could experience what we experience.

Yes, there are hardships. But the abundance of blessings far outweighs the struggles. Every day is a new adventure. Every day he grows a little more and does something new. We have a new purpose as a family: to help him succeed and become all that God wants him to be. What a privilege. He makes us better every day, and fills our hearts with unimaginable happiness. Who knows . . . maybe he’ll get married and have children of his own. Maybe he’ll get a college degree. Maybe he’ll start his own business one day. Maybe he’ll grow to share his story with other people with Down’s.

No matter what happens, we can’t wait to see who he becomes and we’re going to enjoy every minute of the journey.