I wait for the Lord, my whole being waits, and in his word I put my hope. Psalm 130:5
What is hope? What gives me hope in the midst of despair?
I hope for spring in the midst of winter, unable to see the mysterious workings of nature deep underground. I’m powerless in the face of my need for spring. I can’t control the seasons. And yet I have faith, borne in hope, that the breeze will warm, the sun will shine, flowers will glorify the land. I embrace the mystery, knowing that something good and right and true will come out of seeming death.
As parents of children with significant disabling conditions, we hold onto hope for our children’s futures, even when everything we see in the physical realm tells us we’re crazy to hope for too much. How do we frame a future of hope when we’re desperately trying to make it through the day, the week, the month with our children simply well-cared for and our marriages and sanity intact?
I believe that when we’re waiting patiently in God’s presence, our visualized prayers become, like fluffy dandelion seeds, seeds of hope that blow forward and plant themselves in our children’s futures.
When Joel was in elementary school, and behavioral and sensory issues made friendships difficult for him, as I prayed I often visualized Joel having fun with a group of his peers. By the time he was 13 I’d learned of Starfire, a fantastic group for teens and young adults with disabilities. Starfire became Joel’s favorite activity. Twice a month he enjoyed social and volunteer activities with his friends. And the Starfire dances were the highlight of his year, and the place he met his first “girlfriend,” Mary.
Because Joel loves horses and running around the big outdoors, for years, we “saw,” in prayer, Joel living on a farm. In 2008 God led us to a group of parents in our area who were starting a farm for adults with autism. We jumped on board to help build it, and Safe Haven Farms became Joel’s home from 2010-2015. When the farm setting didn’t work out for Joel, my husband and I waited patiently in prayer (well, truthfully, not-so-patiently!), continually “seeing” Joel happy and healthy and free of the anxiety that plagued him at the farm. God opened up the perfect home for him here in our own community, with a caregiver, Mohamed, who has been with us for 13 years. At the age of 30, Joel is the happiest we’ve ever seen him! Alleluia!
Forever, it seems, I prayed for a choir for Joel to join. Music is Joel’s first love. He could sing the words to several songs long before he could talk. No choir opportunities presented themselves. After twenty years of praying, I had almost given up on that prayer vision.
I wait for the Lord, my whole being waits, and in his word I put my hope.
When I wait with my whole being, putting myself body, mind and spirit into that waiting, creative space with God, the seeds of hope come to fruition.
In 2014 my husband and I attended a spring choral concert at Miami University. There on stage, singing with the college A Capella group, was the Best Buddies Friends Choir. A choir of young adults with developmental disabilities! They sang a rocking rendition of Elvis Presley’s “Jailhouse Rock.” My heart beat so hard I could hear it over the thumping music! A choir! A choir for Joel!
I learned that day that the Best Buddies Friends Choir, formed by student Tanner McLellan, was the first of its kind in the worldwide organization of Best Buddies. I immediately called Tanner and signed Joel up. Now, during the Miami school year, Joel practices with his choir every Saturday morning. They have performed at Miami hockey games, Miami basketball games (both men’s and women’s), at the Dayton Dragon’s baseball game, and even for a TED talk given by Tanner. Recently, they performed before hundreds at Miami’s A Capella Awareness Concert (click to see video of last year’s concert), for “Spread the Word to End the Word” day, a day dedicated to ending the “R” word (retarded).
In Romans 8:28 we read, “We are confident that God is able to orchestrate everything to work toward something good and beautiful when we love Him and accept His invitation to live according to His plan.” (The Voice)
Spend more and more time in God’s presence. Soak in Him, body, mind, and spirit. Hold onto hope. Pray for your child by “seeing” him doing those things that bring him pleasure; those things that make her smile and laugh. Blow on those fluffy seeds of hope and watch them soar into the future.
God has something good and beautiful planned for each and every one of us!
You can read about the seeds of hope planted through the prayers of 13 parents of children with disabilities in Kathy’s newest book, The Spiritual Art of Raising Children with Disabilities (Judson Press, 2014)