When Lochlan was three months old, I met with a neurologist in the NICU. She was at the end of her shift but said it was important that we talk.
We sat side by side in front of a computer screen filled with blue, black, and white images of my son’s brain. She pointed to areas where there were sacs of fluid where brain tissue should have been.
I tried to understand what I was seeing, but I couldn’t.
Then she pointed to another area and said, “the brain bleeds are in the area that affects people who have cerebral palsy.”
It was the first time anyone had said those words about my son.
“Su-ree-bowl pal-see? Are you saying he might develop cerebral palsy?” I asked, stumbling over the pronunciation.
“No,” she replied. “I am diagnosing him with cerebral palsy.”
At three months old, based on an MRI alone, my son was diagnosed with cerebral palsy.
I immediately went into fight mode.
What books should I read?
What therapies can we start?
How can I help him?
But what I really meant was: How can I fix him?
Then the fear settled in because I thought the his life and ours were changed forever. I thought our life had been placed on a new trajectory.
What will he be able to do?
What won’t he be able to do?
Like every parent, I worried he would be bullied, misunderstood and, worst of all, be overlooked and invisible.
A couple weeks after this diagnosis, he was discharged from the NICU. Our days were filled with therapies, appointments, and conversations about missed milestones. And yet, he never stopped persevering.
As the months turned to years, I slowly learned one of the hardest lessons in parenthood:
We are not steering the ship.
The life I thought had changed that day was mine, not his. Lochlan’s life did not shift when he was diagnosed. He has only ever known life with cerebral palsy. It was my expectations of motherhood that changed. And now I understand they were expectations I was never entitled to in the first place.
The more I stepped back and let Lochlan lead his own journey, the better things became for him and for all of us. That doesn’t mean we don’t support or challenge him. It means I stopped trying to control the timeline.
Lochlan has always just been Lochlan. His life was never set on a “new trajectory.” He, and only he, decides if and when he crawls, walks, runs or competes in an Ironman someday.
And we, as his parents, are simply here to enjoy the scenic views.
