Down Syndrome—Sharing the Joy of Stephen

My story

Twenty-one years ago, I was twenty-nine years old, had two children in two years, and was again sitting at the end of the sterile, white paper sheet on the table in the ob./gyny’s office, waiting for the doctor to come in the room for a routine check up of my first trimester pregnancy. The last time I was in the room with the pastel wallpaper border of baby rattles and diaper pins, I had my blood drawn for what I thought was a routine exam.

To my surprise, Dr. Alston walked in, a handsome, tall African American man, and greeted me with a smile and handshake.  Next, he stared into my inquisitive blue eyes and expressed concern in his voice when he stated that he had the fetoprotein blood test results, which, unbeknownst to me, checked for abnormalities in the baby and gestation. He hesitated and then said, “There is a very high likelihood that you are going to have a Down syndrome child. Let’s perform the test again and wait for the results that will take two weeks.”

When a pregnant woman receives such news from her doctor, she has a lot to think about.  Am I ready to be a mother of a healthy baby or a disabled child? Do I want this baby? Should I get an abortion?

My philosophy on life is that it is precious.  ALL life is precious.  Therefore, when my husband and I waited the agonizing two weeks for the results of the test, we resigned ourselves to having a Down’s child, although God had another plan for our family.  Our son is healthy and is now a senior at Lewis University.

My Sister’s Story

My sister, Beth, has a similar story to share. When she was forty-four, she knew she was having a high-risk pregnancy, and she told her doctors she didn’t want any testing for abnormalities of the baby unless it would benefit saving or treating the baby before birth because, like me, she would never consider an abortion.  She was carrying her fifth child, and she always considered that God’s Will came into play in everyday life and, most especially, motherhood.

Eleven and a half years ago, she gave birth to Stephen, my nephew, who has Down syndrome.  Yes, he has a disability, and it takes a great deal of patience and love for his family to care for him.  Yes, his teachers do say he has some areas to work on for his behavior and speech, but a lot of kids face these challenges. Finally, his health costs are quite high because of some conditions/health issues associated with Down syndrome, but any child could have medical issues that are costly. My point is that Stephen is disabled, but having a disabled child doesn’t mean your life will be disabled. On the contrary, Stephen is a blessing to his family.  Children with Down syndrome are a witness to all of us that even in the face of adversity/disability, happiness is indeed possible for themselves and their families.

Our Special Stephen

The joy that Stephen brings to his family and friends is immeasurable, and his faith is really most angelic.  Every time he walks up the steps to the second floor in his home, he reaches the landing and rings a bell to signify that he is saying Mass.  I think he is closer to God than anyone I know.

You must meet him to know his charismatic ways. Please watch the video, which he made with his sisters Regina and Anne, and especially note his characteristic bows, which he performs on a regular basis when he is proud of himself. Regina is seen in the film and she wrote the presentation for her special education class in college while Anne filmed it.

It is not easy caring for a mentally or physically challenged child, but it is possible. There are multiple resources, governmental and not for profit, and organizations nationwide and local that offer support and education.  Hospitals and your community or parish may be a good place to start looking for a support group. You can also use Goggle, and there is a National Down Syndrome Support Group or

Therese Jones
Assistant Professor of English
Moderator of Students for Life
Lewis University


Leave a Reply

Your email address will not be published. Required fields are marked *