When Lochlan was 3 months old, I went to visit him and Lex in the NICU as part of my daily ritual. I had been playing phone tag with a neurologist who wanted to meet with me in person. She was ending her shift but squeezed in visit with me on her way out. It was important.
We sat together looking at blue, black and white images of his brain on the computer monitor. She pointed at sacs of water where his brain should be. I tried to understand what I was looking at, but I didn’t.
She pointed to a particular area of his brain and said, “because of the brain bleed, this is the area that effects people with cerebral palsy.” That was the first time anyone had said those two words in regards to my son.
“Are you saying he might develop cerebral palsy?” I said as I stumbled through the pronunciation. “No, I am diagnosing him with cerebral palsy.” At three months old and based on an MRI alone, my son Lochlan was diagnosed with cerebral palsy.
I instantly went into fight mode and asked her questions and asked for resources. “What books should I read? What therapies can I start? How can I help him?” I asked, but, in reflection, what I really meant was how can I “fix” him?
She was caught off guard by my reaction and even said, “wow, I have never had anyone ask me that before. Let me look into it.” I didn’t want him to have cerebral palsy but only because I didn’t know what those words meant.
Then the reality set in and I started to worry about his future. What will he be able to do? What will he not be able to do?
As parents, we all worry that our child will be bullied, misunderstood and most importantly that our child will not be seen. After Lochlan came home and after countless medical appointments and missed milestone after milestone, I learned the hardest lesson for parents to grasp. We are not steering the ship.
The more I was able to step back and let Lochlan lead his own journey, the better our entire family was, especially Lochlan. This isn’t to mean we don’t push him, this just means that I was able to accept that Lochlan and only Lochlan will decide if and when he sits, crawls, walks or competes in an iron man some day.
Today and five years after meeting with that neurologist, hundreds of therapy appointments and unconditional acceptance, I walked into Lochlan’s classroom on cerebral palsy awareness day. The entire classroom was decked out in green and black. I watched the children shout and play in support of his disability. "Lochy, Lochy, Lochy," they chanted as they encouraged him to walk across the room. His incredible teachers went above and beyond since day one, but this was next level. They too were wearing Billy Footwear shoes and had made green and black shirts for everyone that said “his fight is our fight.” The children more than embraced my son. If they noticed his differences, I couldn't tell. He was just another kid in the class. As I tried to take it all in, I was overwhelmed with emotion. It felt like I was right back in the NICU talking to that neurologist. This time it was different though.
This time, I found myself trying to remember what the heck I was so worried about five years ago.