Not that many years ago, my wife and I went for an ultrasound which left us scared, and we were given an appointment for another ultrasound at the hospital with a skilled doctor who simply analyzes visual pictures created by sound waves. The worry was that there were two markers of Down syndrome. Being clergy, we shared this fear in prayer at the church we attended together in the evening, after working at our respective morning churches. A retired minister came up to me in fellowship time and was pastorally navigating this raw situation. This wonderful man, David, was sharing very carefully that all people are people, when I said to him we are not mourning having a child with special needs, we are mourning the loss of our perfect dream and admitting we are scared, for no matter what, this is our child. He smiled and said, “You will be good parents.” At that hospital appointment, we found out that there was no reason to be concerned, but I am glad we had that moment, for I believed it helped us as parents to deal with our son’s autism which became obvious when he was about 18 months. We had this cathartic moment to remind us that our fear is ours, not our son’s.
There are many stories of children with special needs and often I share from my experience, but today I want to recommend a book by Rev. Jeffrey M. Gallagher,Wilderness Blessings: How Down Syndrome Reconstructed Our Life and Faith. This is the story of a pastor whose son Jacob was born with serious heart issues and Down syndrome. Looking back through the Caring Bridge entries during the two surgeries of his son’s first year, he shares what it means to see the Body of Christ to include everyone through the lens of differing abilities. Gallagher asks, and then admits by answering his own question, “So what makes Jacob’s story so special then? Nothing. And everything. And that’s exactly the reason why I felt so compelled to write this book.” (163) I am so thankful that this very specific story shared is understood to be also a universal story for people with different abilities.
I must admit that I have been obsessed with Theology of Disability since Gallagher’s editor and mutual good friend, Rev. Dr. Beth Hoffman, introduced me to his way of thinking at the same seminary Gallagher attended (he graduated the year I began). Now having a son with different abilities and a new ministry that upholds creating a loving inclusive culture no matter of ability, I would of course read this book. Also, having had a sister that was born with a heart condition that required surgery when she was a young child, I was compelled by this story of” J-Dawg’s” (Jacob’s) surgery. However, I do not simply recommend this book to people that have children with Down syndrome, or other different abilities, nor for people that know what it is like to have a child need serious surgery.
I recommend this book to those that do not, as well as those that do have a child with different abilities. So often I talk about the theology of disability to pastors and lay people at conferences or coffee shops (or anywhere I go), and generally the response is to reply “that is interesting.” Then they tell me some sort of success story they know, either in their church or another. I listen intently because I love success stories, but I try to bring it back to why it is important to actually understand what it means to be an Open and Affirming church, which is not simply to be for equal marriage. Don’t get me wrong–I like the success stories, but I recall once when serving in Massachusetts a youth saying we are not racist in that state because we elected Deval Patrick governor. I know that is a success story, but I also know there are still systemic racism in the Bay Colony.
Jeffery Gallagher engages the reader through this very tough first year in the raw entries from the Caring Bridge page. He also brings in other future events up to the current reality, and leads the reader to understand what it is to have a child with special needs. While not all have such life threatening surgeries, it is a story that resonates with the reality of raising a child that has different abilities. Gallagher admits, “Looking back on these posts has revealed just how much of Jacob’s journey at the hospital is a metaphor for the life that we have lived with him.” (137) There are steps forward and steps backward, the uncertainty that is the only certainty, and advocacy is needed throughout Jacob’s life.
Gallagher writes this story in a very compelling narrative for those that know nothing about having a child with special needs. You will be drawn into a wonderful story of vulnerability and love, and gently introduced to the theology of disability, which will only enhance one’s appreciation of the church as a place of belonging for everyone.
Gallagher, Jeffery. Wilderness Blessings: How Down Syndrome Reconstructed Our Life and Faith. Chalice Press: St. Louis, Missouri, 2013.