Down Syndrome: A Symphony in Andante

Before we share our experience of raising a daughter with Down syndrome, we’d like to give you a brief history of our lives. We were married on July 6, 1991. On August 20, 1992, God gave us a beautiful daughter, Melodie Michelle. However, her time with us was very short, as she died of SIDS (Sudden Infant Death Syndrome) at just 13 weeks old. Though it was an incredibly difficult time, God was faithful in comforting us and giving us peace.

Ten months later, God blessed us with our second daughter, Jessica Felicia. She was born with Down syndrome. The day she was born was bittersweet. The doctor informed us of her diagnosis immediately after birth. We were devastated—our first child had been healthy but was taken to heaven, and now God was allowing another challenge into our lives. We grieved again—not because we didn’t love her, but because we knew she would be “tagged” with Down syndrome for life and face many difficulties.

Being surrounded by friends helped, but it was still hard. Several couples in our church were expecting around the same time, and it was challenging to watch their “healthy” babies grow and achieve milestones much faster than Jessica. Her progress was slower, but over time we learned to be grateful for each small victory. We celebrated every milestone she achieved.

Shortly after Jessica was born, we read an article that described Down syndrome in a way that deeply resonated with us. It compared it to a symphony with a slower tempo—Andante—but still just as beautiful. That picture stayed with us. We prayed fervently for Jessica’s health, and God answered. She became a high-functioning young girl. Every therapist who worked with her eventually closed her file, as she exceeded their expectations.

When Jessica was two, we welcomed our third child—a healthy and energetic boy named Joshua. It was a blessing for Jessica to have a sibling. For years, they were very close, spending a lot of time together. Joshua eventually surpassed her in many skills and would often teach her new things (or get her into trouble!).

As they grew, we noticed Joshua withdrawing and spending less time with Jessica. He made new friends and began to leave her out, which was painful to witness. Jessica remained a happy and loving child. We decided to enroll her in a mainstream school rather than a special needs school, believing it would offer more stimulation and growth.

This came with challenges, especially in high school, where bullying and exclusion were real struggles. She was often left out of birthday parties and social events. At home, we dealt with her strong will—persistent and stubborn in both good and difficult ways. We worked hard to help her use that persistence for good, while also understanding right from wrong.

Our goal has always been to treat Jessica as “normal” as possible. That meant giving her both consequences and encouragement, just as we did with our other children. With God’s help, she has grown into a deeply caring and sensitive young woman. About five years ago, she received the Lieutenant Governor’s Award for community service. This medal recognizes the involvement, determination, and positive influence of individuals in their communities.

In October 2016, Jessica expressed a desire to participate in a missions trip. We came to India to volunteer at Pandita Ramabai Mukti Mission, a home for destitute women and children, for two weeks. Jessica had a huge impact on the orphans and widows there. We felt called to return for a longer period and are now serving for 10 months.

One of our significant decisions was when to tell Jessica she had Down syndrome. Because she was high-functioning, we wanted her to hear it from us—positively and honestly—rather than through the cruel words of others (“retarded,” “stupid,” etc.).

Today, Jessica often shares with joy that she is happy God gave her Down syndrome. She sees it as a special gift. She lives her life to the fullest, touching people’s lives wherever she goes. She holds nothing back. Her joy, faith, and authenticity inspire everyone she meets. She is a reminder of how we all should live—with openness, compassion, and purpose.

Our understanding of “normal” has also changed. We no longer believe such a thing exists. Everyone is unique. We all have special needs in our own way. Recently, we celebrated World Down Syndrome Day—an opportunity to honor Jessica’s uniqueness and that of others like her.

We often hear her say with a wide smile, “I have an extra chromosome—and I know how to use it!”

We’re also actively involved in Special Olympics Canada, where Jessica is part of a Downhill Skiing Club. She has been part of the club for 12 years. It’s a place where young people with special needs build confidence, friendships, and unforgettable memories.

As we write this article, we’re reminded that our journey has been very different from what we imagined when we got married 27 years ago. Yet, we are so grateful. God has been faithful, guiding us every step of the way. We have never felt alone. We cannot imagine life without our three children—one of whom is waiting for us in Heaven.