The Spiritual Art of Raising Children with Disabilities

by jphilo | May 12, 2014 | Books and Resources, Different Dream, Special Needs Parenting

The Spiritual Art of Raising Children with Disabilities

Different Dream readers, you’re in for a treat. I’m pleased to welcome Kathleen Bolduc, my friend, fellow Not Alone guest blogger, and author. She’s the mother of a 29-year-old son with autism. She’s also a spiritual director in Oxford, Ohio, and the author of several books on faith and disability. Today is the last day of her blog tour in conjunction with the release of her new book, The Spiritual Art of Raising Children with Disabilities. As part of the tour, Kathleen is sharing an excerpt from the book.

In the Garden

In simple humility, let our gardener, God, landscape you with the Word,
making a salvation-garden of your life.
James 1:21 (The Message)

This morning I bring my Bible, journal, and cup of tea into the garden. A light mist hangs over the fields across the road, and I am surprised to see tender green shoots of corn forming rows where yesterday there was nothing but dirt. All around me, Dame’s Rocket thrusts purple and white spires toward the skies like holy hands reaching toward heaven. Boxwood shimmers greenly in the breeze, and a yellow weed at the fence line bursts into flame as a sunbeam peeks through the clouds.

The words of Psalm 63, my reading this morning, reverberate through my mind. “O God, thou art my God, I seek thee, my soul thirsts for thee; my flesh faints for thee, as in a dry and weary land where no water is.”

In the sanctuary of this garden the desert landscape of my heart—that dry and dusty place where worry and anxiety about my son, Joel, who has autism, sometimes threaten to overwhelm me—turns to an oasis of green, flowing with streams of living water. Prayer rises up within me as praise.

No wonder poets and songwriters often refer to the garden as a metaphor for prayer.

And yet, gardens are not always lush and beautiful. Think of the garden in the midst of drought. Parched plants wilt. Green leaves turn to brown. What was abounding in exuberance just weeks before suddenly sags under the weight of cloudless skies with no promise of rain in sight. Nothing will revive the drought-stricken garden like a soft, gentle, soaking rain.

It is no different for the gardens of our hearts. Sometimes, in the words of my son Joel at the end of a major melt-down, “We need Jesus!”

As the mother of a son with autism, I was first drawn more deeply into prayer because of an intense thirst for God’s presence. I was desert-thirsty, parched for the living waters Jesus promises in John 4:14: “. . . but whoever drinks of the water that I shall give him will never thirst; the water that I shall give him will become in him a spring of water welling up to eternal life.”

The more I spend time with God the more the garden of my heart blooms with an unquenchable love for the things of the Spirit. I need God’s presence just as my garden needs the rain.

Take some time to be quiet and meet with God. Listen to what rises up from within. Have a conversation with God. You may have questions to ask him. Ask, expecting to receive an answer. Tell Him what’s on your heart. Be honest with Him. Bare your vulnerable places. And then, once you’ve emptied your heart, simply listen. He has much to say to you.

Lord, I thank you and praise you for your living waters.
Open me up, Lord. Open me up to your thirst-quenching presence.
Water me, Lord. Water me.

Where do you most often meet God? Nature? Bible study? Service? Worship? Journaling?
How might you establish a pattern of going there to pray on a consistent basis?
In what way do you most often pray? Do you feel “pot-bound”? Might God be calling you to a new prayer avenue?
What kind of prayer will help you more often to be aware of Jesus’ presence with you?

Excerpted from The Spiritual Art of Raising Children with Disabilities (Judson Press, 2014)
Used with permission.

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Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.

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Happy Mother’s Day, Special Needs Moms!

Mother’s Day will be here soon. It’s a day of joy and celebration, but for moms of kids with special needs, it is often bittersweet. Our joy in our children’s progress is often tinged with lost dreams and small worries. Guest blogger Stephanie Ballard puts our feelings into words into a poem about memories of time spent with her young son conquering obstacles at the playground and how raising a child with special needs can draw mothers closer to God.

As winter’s hand faded away from the landscape, I found myself relishing the fresh afternoon sunshine while watching my son climb up the play structure at our local park. He is nearly 10, and he often struggles to find the strength in his weak hands to climb the ladder successfully. I watch other kids half his size climb the same ladder with ease, and for a moment, I am sad for him.

”Watch me, Mommy,” he yells when he reaches the top, and I smile in his direction with pride. I can appreciate these normal childhood moments, as his heart condition is a constant concern, and his energy level isn’t always that of a regular child. I remember when we brought him to this park for the first time. He was nearly 3, and I followed him around the play structure nervously, worrying that he might fall and get hurt. Since the time he was an infant, fragile, blue and weak…I have been a worried mother.

”Let him go,” my husband suggested that day so many years ago, “Let him be a kid.” And as the years passed by, I did grow more comfortable watching him venture out independently. But the worried mother will always remain. I find acceptance in this, while trying to retain a healthy balance.

I wonder sometimes if God watches us, as if we were little children on a playground. We venture out into the world and strive to stand on our own 2 feet, while the trials of life attempt to vehemently knock us down. It is indeed these trials that strive to rob us of the essential things we need to move through life successfully. The virtues like faith, hope, and endurance can be difficult to maintain in times of uncertainty. I wonder if God is carefully keeping tabs from the sidelines, murmuring words of wisdom and encouragement. Perhaps he knows at some point we will fall, but he also knows that we will get back up with a renewed confidence and hope. I watched my son Braeden struggle and fall many times in the last nine and half years, not only on the playground, but in life. A new diagnosis, a surgery, an unexplained illness: these were all trials that made us stumble and falter. With time and reflection, (and a lot of prayer) we are still standing today. He is always there.

Playground

Running on the playground
My son took quite a fall.
He pulled himself up carefully
And then began to call…
Mommy…Mommy…Mommy
I’m hurt…I’m hurt…I’m hurt…
I run to him, he’s on the ground
His face covered in dirt.
I find him with his hands outstretched
His eyes are filled with tears,
I scoop him up and hug him as
I try to soothe his fears.

“It’s okay,” I tell him
(As mothers tend to do)
Now let’s go get you cleaned up
And get a Bandaid too.
I do not reprimand him
For leaving Mommy’s sight
I simply hold him in my arms
And whisper…”It’s all right.”

And then the thought occurred to me
That God must feel this way
When his own child is hurting
He whispers, “You okay”?
In a world where things do go wrong
In a world of struggle and hurt
I sometimes find…I’m on the ground
All covered up in dirt.
“But I can get up by myself,”
I say with just a sigh
“I’m strong enough to stand myself.”
I will not even cry.
And so I brush off all the dust
And stand, to my great boast
Why must we fall to realize
What really matters most?

And so I watch each step with care.
Can I avoid a fall?
But living life so carefully
Is not living at all.
I do not have the answers
(I may not understand)
But this I know for certain
He’s there to take my hand.
The playground of life lies before me
At times it’s hard to see
That open arms are waiting
To love and comfort me.
If I should fall tomorrow,
If I should fall today,
The one who holds eternity
He still says, “You okay”?

What Have You Learned?

Oops, I forgot to issue a tissue warning with Stephanie’s poem. Does it make you think of lessons you’ve learned while raising a child with special needs? Please share them in the comment box, or share your Mother’s Day plans. Happy Mother’s Day to all of you!

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Stephanie Ballard is the mother of two sons, her youngest son, Braeden, was born with Kabuki Syndrome and congenital heart defects. Her oldest son, Colin is in the military. She enjoys writing poetry and life lessons about her journey in life.