The Spiritual Art of Raising Children with Disabilities
Twenty-five years ago, when my son Joel was a toddler, I woke up one day with the knowledge, deep in my gut, that I did not have what it takes to parent a child with a disability. We didn’t have a diagnosis of autism yet. What we did know was that our youngest son wasn’t developing according to the timetable followed by his two older brothers, He had constant meltdowns and tantrums. He pulled hair. He had a miniscule attention span with a constant need for attention and redirection.
I opened my eyes that morning knowing there was no way, in my humanness, that I could do this right. I simply didn’t have the vast reserves of energy, creativity, wisdom, and insight needed to be the mother Joel’s needs required.
Parenting a child with a disability or chronic illness is hard work. Keeping up with the research alone is a job that could swallow a person alive. Add to that, negotiating daily life—trips to the grocery store (disruption of routine), doing the laundry (chaos), serving family meals (beware the picky eater), getting out the door to go to work (Are you kidding?), and finding the best schools for our children’s needs (Help!).
Yet overriding all of the above is the deep and abiding love my husband Wally and I have for our children. Fragile hearts are a condition of our humanity. Our hearts break as we observe our children’s struggles and anxieties; watch a nurse hook them up yet again to an IV; see them left out of a neighborhood game; or witness their daily meltdowns, aggressive behaviors, or inability to voice their thoughts and feelings.
And so we work. We work until we’re numb, finding the right doctors, the right therapies, the right schools, the right medications and supplements, the right diet, the right parenting techniques. Our to-do lists grow exponentially. We expect the lists to shorten as our children get older, but instead, we find them growing.
And we become very, very tired.
Where do we go for solace? For rest and refreshment? For an infilling of joy? We know where to find those things for our kids, but where do we find them for ourselves?
Henri Nouwen is one of the great spiritual teachers of my life. I never met him in person, but I knew him intimately through his books on the spiritual life and his work with adults with disabilities. In his book Spiritual Direction: Wisdom for the Long Walk of Faith, Nouwen defines spiritual direction as a relationship between someone who is seeking after God and one who has already walked this path and is willing to listen to, pray with, and respond with wisdom to the questions the seeker is living with.
I have been seeking God in the midst of my son’s disability for more than twenty-eight years. Meditating on and writing about this journey has grown into my life’s work. This walk with Joel’s disability has led me to my own spiritual director and to becoming a spiritual director myself.
As I pondered the theme of my book, The Spiritual Art of Raising Children with Disabilities, an image of a mosaic kept coming to my mind. I began thinking of the way mosaics are fashioned from broken shards of pottery and pieces of splintered glass. I’ve been thinking of how the artist fits these pieces together; carefully arranging and rearranging them so that the broken edges piece together like a puzzle, forming a beautiful and elaborate pattern. Mosaics generally are colorful and are often crafted of materials that reflect the light or glow as light passes through. Up close, a mosaic may look like a jumbled series of broken pieces. But when you stand back and view it from a distance, you gain the perspective needed to see the unified whole. Created by hand, mosaics are a way of viewing the world—brokenness in wholeness, wholeness in brokenness.
What a wonderful metaphor for our lives as parents of children with disabilities. Think about it. Think about the way our lives are shattered with that first diagnosis. How we wake up the next day realizing that our lives will never be the same again. How we work and work at gathering up the pieces, attempting to rearrange them into the familiar pattern we knew before. How we keep striving to create something new.
Just as the mosaic artist needs tools to create a beautiful piece of art, we need tools to help us negotiate new ways of being as parents of children with disabilities. Spiritual direction, meditation, and lectio divina are just a few of the priceless tools that can help parents on this journey, leading to exquisite mosaics that far surpass the beauty of life before disability.
~ Excerpted from The Spiritual Art of Raising Children with Disabilities (Judson Press, 2014)
Kathleen Deyer Bolduc is the author of several books, including The Spiritual Art of Raising Children with Disabilities (Judson Press, 2014) and Autism & Alleluias (Judson Press, 2010). Her spiritual direction practice is located at Cloudland, a contemplative retreat center she founded with her husband in 2010. http://www.kathleenbolduc.com/wp/about/