This quote by the theologian Soren Kierkegaard speaks to my heart as Joel’s mom. Joel is the youngest of my three sons. A handsome young man of twenty-eight, Joel has autism and moderate intellectual disabilities. God meets me daily on this mothering journey, enabling me to let go of future fears and past regrets—empowering me to lean fully into today even as I walk into the future. God gifts me with wisdom and discernment as I look back and remember God’s faithful presence every step of the way.
I had a light-bulb moment fifteen years ago as I sat in the waiting room of Joel’s play therapist. I was struggling with feelings of self-pity, exhaustion, and guilt. It was summer time, and I was angry that my family couldn’t take the fun vacations our friend’s families were taking. Only the beach for us, familiar and undemanding. But as I zoned out, staring at a Monet poster on the wall, I stepped out of time and stood on the bridge in Monet’s garden. I suddenly knew I wanted to change the lenses through which I viewed our life with autism. I wrote a poem about it, entitled “Waiting Rooms.” The last stanzas of that poem read:
Can I carve a garden
from the weedy turf of life
plant colors of my choosing
in arrangements pleasing to my eye
weed out thistles
of resentment and fear
replace them with flowers
of joy and contentment?
Suspended between past and future
in this waiting room
I weave a garden plan of beauty
while I wait
for my son
(From Autism & Alleluias, Judson Press, 2010)
When I wrote this poem, life was hard. Daily melt-downs—too many to count. Sleepless nights—again, too many to count. Too many doctors. Too many people sitting around the table during too many IEP meetings. Too many family times disrupted by behaviors.
But in that waiting room I heard God calling me to look for the blessings in the midst of too-muchness and too-manyness—to look for His presence right here, right now, in the realm of the just-right.
And so I began to search for and meditate on those places where God’s grace glimmered on a day-by-day basis. A good book at bedtime. Chasing rainbows in the car with Joel. One-on-one time with Matt and Justin while Joel hung out with Dad. The squish of sand between my toes and the caress of a soft sea breeze on those yearly beach vacations.
We played it safe, up until Joel’s 28th year, sticking with beach vacations, branching out to a cabin in the mountains on occasion. Always with additional help accompanying us, so that Wally and I could have a bit of “couple” time, and everyone could return home refreshed and restored.
But this year we gambled on God’s grace. We took Joel, without additional staff, on a vacation to Long Island, New York, to visit with our ministry partners from Bridge for Peace (a worldwide healing ministry). The six day trip included a plane flight from Cincinnati to La Guardia; a taxi ride to Jamaica Station to catch the Long Island Railroad; an hour train ride to Ronconcomo Station half-way out the Island, and another forty minute car ride from there to our friends’ house.
A LOT for a guy with sensory issues to handle. But handle it he did, with aplomb (“Great restraint shown under even the most trying circumstances”). And there were more than a few “trying circumstances:”
A four hour delay in the Cincinnati airport, putting us in New York at rush hour; navigating LaGuardia and Jamaica Station where the entire population of New York seemed to be converging; a crazy taxi ride through traffic; and two minutes, from the moment we bought our train tickets, to find and board our train. Yikes! Not an easy feat for anyone after a full day of travel, much less someone who has never before wheeled his own suitcase!
Once settled in at our friends’ house, Joel slept in a strange bed, met many new people, sat through a two hour prayer meeting, and was asked to pray for people he didn’t know (Joel is on our prayer team at home, so he’s used to hands-on prayer, but generally with people he knows).
Gambling on God’s grace isn’t really a gamble. It’s a sure bet. Mixed in with the trying circumstances were many unforgettable vacation moments. A four hour “Praise Cruise” with Bridge for Peace on Long Island’s Great South Bay (where Joel’s exuberant worship lit up his corner of the boat, blessing everyone who watched him); long walks on the beach, a trip to the aquarium, leisurely meals around the table with dear friends (while Joel retired to the couch with his iPad), a concert on the beach, and a relaxing day at a friend’s pool.
Life can only be understood backwards; but it must be lived forwards.
God encourages me to choose life every single day, empowering me to move forward, living life—just as Joel lived his vacation—with aplomb (another definition for this wonderful word is “grace under pressure.”) This is what I know to be true: I have a daily choice to look at life with autism through the lenses of God’s blessings or through the lenses of “woe is me.” The gift of watching Joel navigate trains, planes, and automobiles with the assurance of a seasoned traveler would never have happened if I did not lean into God’s promise that He is the same yesterday, today, and tomorrow, and that He has been, is, and will be with us every step of the journey.
I praise God for Joel’s vacation this year. So many stones of remembrance to pick up and revisit when life gets hard again. So many reasons to lean into today, knowing I’m walking in God’s presence. In the words of the song In God’s Presence (Kevin McKernan): “In God’s presence/Wisdom unsearchable/Riches incomparable/Grace inexhaustible.”
May you experience God’s inexhaustible grace today. Kathleen Bolduc