This post is in recognition of Down Syndrome Awareness Month.
Five years ago, I got some of the best news I would ever receive. Sitting in a doctor’s office, holding my three-month-old son, I first heard the words “Down syndrome” applied to someone I love. And I thought it was incredibly sad news.
Before Joey came along, I truly believed that families like mine had to pretend to be happy. When he was diagnosed, I tried to picture all of us together at the park, fake smiles pasted on our faces, our sad eyes fooling our children but not those around us, those “smart enough” to know just how hard it must be to have a child with special needs.
I have never been more thankful to be wrong.
To be honest, I actually feel sorry for families who don’t have a Joey in their lives, for people who don’t get to experience the indescribable joy Joey brings to us. I’m not saying it’s never hard. I’m not saying we don’t struggle.
Let me put it this way. I don’t get excited when I tie my shoes in the morning. I don’t think, “Wow! Look what I just did! That’s tremendous!” Why not? Because it is easy. It is ordinary. I don’t walk out to my mailbox and celebrate, “Hey! Look what I just did! I made it ALL THE WAY out here! Woo-hoo!” Because it really didn’t take any effort. Just about anybody can get to their mailbox. I’ve done it thousands of times, and will do it thousands more.
But when I motivate myself to actually get to the gym, and then push my body to work harder than it is used to, and I sweat and toil, and then make myself run just a little bit further than last time, that feels GOOD. It is hard, and there are times I think, “I should have just gone to Starbucks,” but at the end of the workout I am PROUD.
The way I feel after a workout doesn’t even come close to how awesome it feels every time Joey does something new. He doesn’t understand new concepts as quickly as a typical child. He doesn’t have the verbal or motor skills of other five-year-olds—or even many three-year-olds. But every single time he does something new, even something as small as saying a new word, it is cause for major celebration in our family, simply because he’s doing it—whatever “it” is! He knows something, understands something, is doing something he’s never done before. He has worked hard—and often I have worked hard too—to make it happen. It’s an incredible feeling.
I will never forget the night I snuggled Joey at bedtime, and suddenly I realized the noises he was making were a song—his own sweet version of “Jesus Loves Me,” because he knew I sang it to him every night before bed. I cried the happiest tears I have ever known. Almost every single night since the day he was born, I have sung that song to him, sometimes with a different kind of tears, the sad kind. I’d wonder, “Does he even understand what I am singing to him? Does it matter?” I’d think, “I could be singing anything right now, and he wouldn’t know the difference.” And then, finally, that night I heard it. He sang. He knew. He got it. “Jesus loves me.” I can think of no greater cause for celebration.
Do you know what else is incredible about Joey? Him. Just him. The way his smile absolutely lights up a room. The way he draws people in with his complete and utter adorableness. The way he claps and cheers for himself to let you know that he has done something amazing in his own eyes. The fact that he could not care less if it takes him a hundred tries to learn something new—he enjoys the process. He teaches me more about loving life than I could ever teach him.
Yes, sometimes it’s hard having a child with special needs. Sometimes I get weary and frustrated and I want to cry—and sometimes I do cry. But the joy is worth every. single. battle. In fact, the battles make the joy that much sweeter.
Before Joey, I thought I was lucky that I didn’t have to “deal” with a special needs child. But now I know the truth. With Joey in my life, I am the lucky one.
Katy Epling is a writer, speaker, and “masterpiece in progress” (Ephesians 2:10) from Akron, Ohio. She and her husband Jon have three beautiful children who provide her with multitudes of material—both dramatic and comedic. Learn more about her heart and ministry at katyepling.com.
Photograph used with permission from, and copyright of, Katy Epling.