When I run, it’s a struggle to get up the hill near my house. I aim for the cherry tree at the rise.
A few nights ago in the pewter rain, Kyle drove to his brother’s house to watch a movie. He is twenty-one.
My husband and I thought this day might never come — the moment our son Kyle would drive out of our driveway into the starlit night. Solo. Just to spend time with someone he loves.
We had already done this with our three other children, doggedly taught them to drive and then actually let them.
It’s harder than you think.
Even when the Department of Motor Vehicles says they’re ready, it is never the moment of freedom you think it might be. Every time they drove off, not just at first but even long after, I kept waiting for the phone to ring with heartbreaking news. I pictured flashing lights, a crumpled car and shattered glass.
Imagining the worst while still believing the best is a crazy mark of good parenting.
Or maybe it’s a good mark of crazy parenting? I can’t remember.
We are vulnerable from our child’s first secret heartbeat and we never really recover. My mama taught me that. I was the child who totaled the family station wagon on her first road trip and graced my parents with that 2 a.m. phone call from the ER.
I’m sure my parents imagined the worst during the three-hour drive to bring me home, stitches in my forehead and two black eyes.
To appreciate this particular moment with Kyle, you have to know where we began.
Back then, I would have called Kyle’s first year of life typical. Now I know there is no such thing, but it took some time to figure that out. Kyle was born third in our family after two children and two miscarriages. He was a waited-for baby. He arrived full of bubbles, all big blue eyes and a cabbage patch head with diving pool dimples.
He touched first-year milestones, but soon after his birthday we began to see changes, subtle at first and then seismic. He talked, but he seemed not to hear anymore or maybe not understand. His bright eyes and dimpled smile began to fade. He glanced, but rarely looked us straight in the eye.
He flinched and got angry at the slightest touch. He hit us and other children when he was frustrated, which was much of the time. We learned the hard way to remove jewelry and glasses during his wild tantrums. Afterward he woke up looking clear-eyed and rested.
Our pediatrician was watchful and ultimately honest with us. He began with Pervasive Development Disorder. Then the word we most dreaded rang in our ears: autism.
Someone recently ask me, “What is so devastating about autism?” Back then autism was a terrifying diagnosis of darkness, isolation and uncertainty for both child and parent. Parents literally watched their child hopelessly fade away a little each day, lost to another world forever.
Mike and I desperately wanted answers for Kyle. We’d take almost any answer, but please not that one.
No amount of denial, resistance, hard work, organization, or waking up to a new day changed our world. We read all we could get our minds around and plenty we could not. We got second opinions, found specialists, had Kyle tested, and tested some more.
We cried, we struggled, we zombied around between life and death.
We prayed through bruised tears.
Today we know so much more about autism; that it isn’t one point, but a spectrum of abilities and disabilities. Faceted gems buried underground and under pressure. You have to go to dark places to bring these startling gems to the light.
I used to quip to make light of my deepest fear. Of course God knew what He was doing, but maybe He nodded off or looked away for just a split second on this one.
I knew better, but deep down I was afraid it might be true. If we are made for friendship and community, how could such brokenness and isolation be part of God’s design?
Before Kyle’s eighth birthday, autism shot my broken heart into outer space. I stood waiting for the shattered pieces, hot with re-entry, to rain down on my open chest.
Mike and I went to places we had not known before and did not want to go. We were in the principal’s office (suspended in first grade) and the child psychiatrist’s office (clinical depression) rather than birthday parties (no invitations) and summer camp (too much of everything).
At times struggling through tsunami grief and crashing dreams tore us apart. Alternately, the struggle took Mike and me to solid and sacred places in our love.
“I don’t know who said this, but there really are places in the heart you don’t even know exist until you love a child.” -Anne Lamott
Mike and I slowly learned to widen our circles around a strong tower. We built a community around us, a city of help in concentric circles, first our family and Christian faith, then tough-enough friends and wise mentors. Around them, pediatricians, psychiatrists, psychologists, teachers, speech and language pathologists and occupational therapists. We gathered those who could help us cope with reality and still believe in Kyle’s wild possibilities.
Autism made my love grow all the more fierce, tender, and full of grace.
If I could write to my younger mama self, I would say to her,
A time is coming when you will feel weaker, but in truth you will be getting stronger. You will need to need people, and it might surprise you who they turn out to be. God will be there, too.
And when you run up that hill by your house, aim for the cherry tree. It won’t bloom in the first few years, but it will be flowering when you get there.
Guest post written by Terri Conlin. Terri is an architecture grad from the University of Texas at Austin who is constantly surprised at how the patterns of home follow her into every kind of creative work, from her family to writing to non-profit work. Terri is married to Mike and together they have four kids and two grands. When she is not drinking strong coffee from a thrift store mug and reading good books, she is writing at White Pitchers, a creative place to fill your soul. You can find Terri at: www.whitepitchers.com, on Instagram and on Facebook.
P.S. Head over to our giveaway page and enter to win a PacaPod diaper bag of your choice valued up to $475!