An Angel
by Carolyn Neher
Carolyn and Jonah
In May 1996 a baby boy was born into our family. Jonah was pink, strawberry blonde, and he had Down syndrome. We were immediately transported into a new reality.
At church, when my husband announced that we had a little boy with Down syndrome, there was an audible gasp. My husband calmed the congregation by explaining, “He is our angel who said, ‘Yes, I will go.’”
We have been so lucky in our congregation. Jonah was a part of the Sunday school classes like everyone else. He joined in all the activities, and we felt the love and care from our congregation.
It has not all been easy, even within our congregation. We thought Jonah would have friends for life; but he did not. At around the age of five, other kids started to see the differences between Jonah and themselves. They did not understand or have the empathy that was needed to have a friend who could not run as fast or have a conversation with them. Nor was our local church camp able to support Jonah. This was difficult, as both my husband and I felt that our camp experiences had shaped our friendships for life. We feel sad that he missed out on that experience.
Still, the church has been a place where we feel support. As Jonah grew, our pastor found ways to include him. During the children’s story, our pastor made sure Jonah was asked and given an opportunity to speak, even when his words were unintelligible. Sometimes my husband or I helped to interpret. At potluck meals, guess who likes to say the prayer before the meal? Jonah does! So, for several years, he was the official potluck pray-er. We are grateful for a friend who made sure our son could go to National Youth Conference one year and share in that experience. Now Jonah is one of the ushers during offering time. The church is his place; the people are his people.
Recently we have had the opportunity to become a part of Parables Community, created for families with disabled children who have not been as lucky as our family. Jonah feels ownership in this congregation. Sometimes he is even willing to give the prayer during the service. Our family is also there to be a presence for those who come in and want a church home for their child and family. I have heard so many stories about how children with Down syndrome or other disabilities were not allowed to go through confirmation because they could not read or keep up with their peers, or families who were looked down upon because their child was too loud during church, or children who were excluded from Sunday school because they were not in the “norm”. Eventually many of them just left the church.
I am grateful to be a part of several congregations who have said to my son, “You are the beloved.” These are congregations in which we all belong, no matter our abilities. We are all angels, some braver than others.
Carolyn Neher has a M.A. in Early Childhood. She works in the care and education of children in both private and public settings. She serves as a trainer of volunteer staff for Children’s Disaster Services of the Church of the Brethren.
