Living with Down Syndrome: Keaton’s Story—Written by his mom, Paula

Keaton's Story: Down Syndrome

Keaton was born with Down syndrome.  His mom, Paula, shares her perspective of raising a son with Down syndrome.  She describes how Keaton is happiest when he is making someone else happy by helping or serving. 
My husband and I were both 40 years old with three beautiful daughters who were quickly becoming teenagers. Something possessed us to think that if we had another child, our nest would not be empty as soon and therefore we would not be “old.” So we did just that, well, the having the child part.

After 36 REALLY long hours we delivered our son at home with the help of midwives. My main concern was that his feet were turned in, but my husband was concerned that he looked like he may have Down syndrome. The midwives along with a family physician who was a member of our church assured us that we didn’t have anything to be concerned about, because he had good muscle tone, a strong cry, and did not have the single crease across the palm of his hands, which most babies with Down syndrome do. They pointed out that he did not look like “a typical Down syndrome baby.”

After seven long months of denial, we submitted to a blood test, and it confirmed that our handsome little boy indeed had Trisomy 21. We were blessed with an amazing geneticist who encouraged me to raise my son in the same way I had his three older sisters, to expect great things. I remember asking “what do you think of my son?” and his reply was “he is a great little guy.” I countered with “no, I mean, what will he be able to do?” His reply to that was “he is the only one who will be able to show you that, he will be able to do anything any other kid can do, it will just take him a little longer.”

Keaton required surgery to repair club feet and open heart surgery to repair a congenital heart defect, all before he was two years old. I can remember wondering at times if he would ever walk or talk. He now keeps us all entertained with his dancing and singing. He sings the Star Spangled Banner every year for his school musical and anytime he receives an invitation, whether for a school board meeting or a high school volleyball game. He will tell you he is a “rock star.” He is happiest when he is making someone else happy by helping or serving.

Each phase of Keaton’s life has brought new challenges, and God has given us the wisdom to get through each one. As we ease in to the teen years, it brings a brand new bag of questions and forces this mom to think once again about how I will survive an empty nest. I have to tell myself we have made it this far, God will get us through the rest.