The Spiritual Art of Raising Children with Disabilities:

Book cover

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 didn't roll over, sit up, walk, or talk on time. His social skills did not develop appropriately. And his behavior! Constant melt-downs, tantrums, and hair-pulling, not to mention 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 that Joel's needs required.

What I did have was my love for my son, my love for my family, and my love for God.

As this amazing scene unfolded, Joel took Jesus’ hand into his own. Such a large hand in the small hand of my son. Joel examined that hand, the hand that fashioned the heavens and the earth, as if it were as common as his father’s. Finding a small scratch, he leaned down and kissed it.

That day, after Joel's preschool bus wheezed away from the house, I sat down to meditate, a practice I'd taken up after my father had died six years earlier. I began repeating my centering phrase, “Maranatha, Come Lord Jesus,” hoping it would help me move through bone-crushing anxiety to a place of peace. I found myself, instead, having a heated one-way conversation with God.

Are you there, God? Are you listening? I can't do this on my own! I'm handing him over, Lord. He's yours. And while you're at it, you're going to have to show me how to mother this child. Because the mothering skills I've learned over the past ten years with Joel's brothers just aren't doing the trick. I'm helpless here, Lord. Are you there? Are you listening?

Parenting a child with a disability or chronic illness is hard work. It will most likely be the hardest work we will encounter in our lives. Keeping up with the research alone is a job that could swallow a person alive. Not to mention 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 school for our child's needs (help!).

Yet, overriding all of the above is our deep and abiding love for our children. Fragile hearts are a condition of our humanity. Our hearts break as we watch 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; 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 in-filling of joy? We know where to go for our kids, but where do we go 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.

I have been seeking God in the midst of my son's disability for over 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. It is my greatest hope, in the pages of this book, to walk alongside you as you live the questions that are rising up in your heart, and to help you pay attention to God's presence in your life. I will give you some questions to ponder, and some reflections to which you can respond, so that the words on the page will become three-dimensional, turning into lived experience.

The pages of this book are also filled with stories from other parents who have walked similar paths with a child's disability or chronic illness, and have encountered God along the way.

Best of all, there is a treasure chest full of ancient traditions, the spiritual disciplines, for us to explore together. Traditions that have been a part of the Judeo-Christian experience for thousands of years. Traditions that draw us ever closer to God; traditions that heighten compassion for our fellow travelers, fill us to overflowing with the joy of the Holy Spirit, and, amazingly, lower stress at the same time. Could you use a little less stress in your life? I thought so!

Close your eyes and visualize an empty cup. Allow yourself to feel its emptiness. Then, in your mind's eye, see that cup being filled by a pitcher of water. A bottomless pitcher of water. See the water slowly fill the cup until it runs over the rim. Feel the refreshment of an empty cup being filled. That's the kind of joy the spiritual disciplines can bring to our fatigued and thirsty minds, bodies, and souls.

As I pondered the theme of this book, 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. There is a certain kind of mosaic, called “memoryware” which is made of “found” objects—buttons, pottery, toy figurines—objects with connections to everyday life. 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 are generally colorful, and often are 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.

Merilee Tutcik, member of the Society of American Mosaic Artists, writes, “Mosaics are a metaphor for life. It's all about putting the pieces together.” 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.

If we allow it, God, the master artist, will help us bring those broken pieces together. God will, in infinite love and compassion, work alongside us, helping us to rearrange the pieces into a work of beauty that surpasses the beauty of what our lives were before.

One mosaic artist states, “Beauty is not an option, but a strategy for survival.” And so, the overarching metaphor of this book is the mosaic. How do we find beauty in our lives as parents of children with disabilities? How do we, with God's presence in our daily lives, rearrange the fragmented and chaotic pieces of our family into a new and beautiful work of art?

The Spiritual Art of Raising Children with Disabilities (Judson Press, 2014)
Used by Permission

The photograph of Joel and Kathy is courtesy of The Cincinnati Enquirer.