Caring for Children with Disabilities As Spiritual Practice

This morning I listened to a Henri Nouwen Now & Then Podcast, with Karen Pascal interviewing Marjorie Thompson, author of the Christian classic, Soul Feast: An Invitation to the Christian Spiritual Life. The topic? Caregiving. Something we’re intimately acquainted with, right?

Marjorie talked about her journey of caring for both her mother and mother-in-law, in her home, for years before their deaths. Something she said hit me like a thunderbolt.

Karen asked Marjorie how caregiving impacted her spiritual journey, and what spiritual practices she found most helpful. With a laugh, Marjorie responded that caring for her mother and mother-in-law was her spiritual practice.

The pieces fell into place. Marjorie had just articulated what I knew in my heart. For 25 years my son, Joel, who has autism, was my spiritual practice.

Like Marjorie, I teach and write about spiritual practice.

Spiritual disciplines, such as centering prayer, journaling, lectio divina, gratitude, simplicity and solitude, are tools we use to practice the presence of God and open ourselves to the transforming power of the Holy Spirit. We set time aside for these disciplines, practicing them daily, just as we would practice the piano or learn a new language. We practice for 30, 60, or 90 minutes, and then we get up from our chair and enter into daily life again. Our hope is that practicing these disciplines will make us more aware of God throughout the rest of our day. We pray they will open us to the Spirit’s work to be transformed more and more into the image of Jesus.

I love this quote from Ruth Haley Barton, author of Sacred Rhythms: Arranging Our Lives for Spiritual Transformation:

While we cannot transform ourselves into the image of Christ, we can create the conditions in which spiritual transformation can take place. This is where spiritual practices come in. Spiritual practices are not ways to make brownie points with God or to prove our spiritual superiority to others. They are not a self-help program by which we take control of our journey and change ourselves. Rather, spiritual disciplines are concrete activities that we engage in in order to make ourselves available for the work that only God can do (Transforming Center: What We Believe About Spiritual Transformation).

Caregiving is a spiritual practice. Raising a child with significant disabilities is a spiritual practice. This isn’t time set aside for transformative practice. This is total immersion, sort of like moving to France before you know French, and learning to speak to the locals through living with them.

Only not quite as easy.

The questions we learn to ask, when practicing spiritual disciplines, are these:

  1. Where is the Spirit of God at work?

  2. Where does that movement of God intersect with my personal life?

  3. What is God inviting me to today?

For 25 years, before Joel moved into his own home, I asked myself these questions throughout my days, not just in the midst of practicing my favorite disciplines of Lectio Divina and centering prayer. As Joel’s mom, I was living the questions!

In the early years with autism, I was constantly searching for God:

Where are you God? Are you listening, God? I need to see your face, Lord. In order to keep going, in order to understand what I don’t understand yet, I need to experience your presence. Send me a person, a book, a song, a scripture…anything to let me know you are here in the midst of this struggle.

The questions and wrestlings became my way of connecting with God. In the asking, God answered. He sent me people—Henri Nouwen was one of them, along with The Writing Academy and Patty Kyrlach; Bridge for Peace and Annette Eckert; College Hill Presbyterian Church and Cheryl Schaeffner. He sent me books—again, Henri showed up, along with Madeleine L’Engle, and Richard Foster. He sent me songs and scriptures just when I needed them. Jesus showed me He was serious when He said, Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you (Matthew 7:7 NLT).

Photo credit: Pearl on Lightstock.com.

Photo credit: Pearl on Lightstock.com.

Where did the movement of God intersect with my life?

As I continued seeking and finding God, I began to understand just how much God loved me. I wanted to spend more time with Him. I saw that Joel’s unconditional love for me was a model of God’s blueprint of unconditional love for both of us. As I fell deeper into love with God, I began to show myself, and Joel, the grace that God kept pouring out. I found the courage to follow the path that God had laid out for me—mom, writer, contemplative, spiritual director, retreat leader.

What was God’s invitation?

I began to understand that God was inviting me “home,” home to the person He had created me to be. A place where I could be comfortable in my own skin; where I didn’t have to try to impress anyone, or compare myself to others and come up lacking. Again, Joel was my model—I’ve never known anyone so much “himself” as Joel. No masks. No ego trips. No pretending. I’ve also never met anyone who lavishes Joel's brand of unconditional love, other than God! Joel became my human role model for the fruits of the Spirit: love, joy, peace, patience, kindness, generosity, faithfulness, gentleness, and self-control Galatians 5:22 NRSV (Well, we can both work on the self-control part!).

Where would I be in my spiritual walk today without Joel accompanying me on the journey? I can’t even imagine.

Living with Joel immersed me in a life of practicing the presence of God on a daily—sometimes minute-by-minute—basis. I will never be the same.

PS: Check out Marjorie Thompson’s new book, Courage for Caregivers: Sustenance for the Journey. I just ordered a copy.

Kathy is a spiritual director, author, and co-owner, with her husband, of Cloudland, a contemplative retreat center outside of Oxford, Ohio. The mother of 3 sons, 1 daughter-of-heart, and 1 grandson, she also enjoys writing middle grade fiction. You can reach her through her website, kathleenbolduc.com.