Written by Bill Switzer

Ordained minister and practicing attorney, Bill Switzer is a member of First Central Congregational UCC in Omaha and serves on the UCC Board for Justice and Witness
Ministries.

Barbara and I have two children, Greg and Grant. Before our older son Greg was born, the excitement of Barb’s pregnancy gave way to anxiety over whether the pregnancy
would go full term. Now 13, Greg’s birth, growth, and development we consider “normal.” His birth, a wonderment, it is inconceivable what life would be like without him.

Grant’s pregnancy was a surprise. The amniocentesis told us that Grant had extra chromosomes; that is, Grant was a child with Down syndrome. We were referred to
geneticists and professionals who knew about birth defects and statistics. They talked about worst-cases scenarios and all the bad things that could happen. I do not recall any professional ever telling us that this child could bring joyful tears.

With Grant’s diagnosis, Greg, Barb, and I began a journey fraught with danger, excitement, joy, and fear. With his birth, we entered a different world. Grant was born six weeks premature and spent a long first month in the hospital’s neonatal intensive care unit. There were breathing machines, pneumonia, bronchial tubes, needles, x-rays, surgery, and all sorts of other painful things.

When Grant was 15 months old, he got very sick. After five weeks in the pediatric
intensive care unit, he had surgery that helped him to live. Normal has nothing to do with Grant’s life. In the midst of the chaos of the hospital stays, our family had birthdays, Christmases, Easters and special events. Greg had school, presentations, scouts, concerts, parent teacher conferences, and activities. Grant came along as did the oxygen bottles, nasal cannula, gastric buttons, and nebulizers. Some looked at Grant as “odd” or somehow not right, a child who had no hope, no life, no future.

Barb and I do not have family living nearby. During the first two years of Grant’s life, our lives were focused on just making it through the day. Without our church community, we would have been alone. When we learned that Grant was going to be born with Down syndrome, the first person who came to visit was our minister, Winston Baldwin. He talked about his experience with families and persons with Down syndrome. He provided us with a bit of hope that all was not lost.

During Grant’s lengthy stay in the pediatric intensive care unit at 15 months, Barb
celebrated a birthday in an unusual way. Two church women brought dinner and a birthday cake to the hospital. We ate a meal and blew out the candles in the nurses’ lounge. Somehow, baking a cake was as comforting and supportive as words.

When we needed a break from staying in the hospital with Grant, another woman
from our church announced in church, “The Switzer’s need help to sit with Grant
for two hours each day, so Bill, Barb, and Greg can eat dinner together.” For a month,
each day at about 5:00 p.m., a member of our church would arrive at the hospital to “be”
with Grant.

Grant has been embraced and has become part of our church, no less or more than
Greg. Where Greg relies on his verbal and cognitive abilities to participate in
the church, Grant uses his good looks and charm. Our church’s care and support gave
me hope, not in the sense that there would be some “miracle” where Grant would magically be “normal.” Instead, I discovered that in Grant’s life, there is a celebration and challenge about life that has not been present before. We do things differently. Now, we have to be intentional about how we, and Grant, learn about the world, God, Jesus, the Church, and what it means to be human.

I am not really sure where this parental journey with Greg and Grant will take us.
Most of the time I feel as if I am wandering and wondering in the desert trying to figure
out which way to go. Yet even in the midst of the wandering, my church gives me hope
and provides me a place to question without being judgmental.

Greg’s birth and life is a daily reminder of the presence of the grace of God in my life.
Grant’s birth and life is like seeing the face of God.

From UCC DM Newsletter Archive