I shared this photo (above) and short story with family and friends while we were on our Christmas vacation:
At Ronan’s happy place.
He was so happy, so very happy.
I was, too.
Until he crossed the foul line.
When Ronan’s gutter ball didn’t knock down any of the pins, he decided to go knock down the pins himself. I booked it down the lane after him. But dang, those bowling alley lanes are so slippery.
Down I went.
Ronan kept going as fast as his ataxic, neuropathic little legs could move him with my husband scrambling not too far behind.
Ronan made it to the pins before I could get up and before either one of us could reach him. He knocked two pins over, and before Daddy reached him, down the sweeper bar came right next to his head. Oof.
But Ronan was happy. And sometimes, even though you’ve left your ego (and a few tears) on the slick floor, it’s okay.
Hearts still full ♥
When we arrived at the bowling alley earlier that day, I made a point that morning to not tell the manager about Ronan. I don’t always do that. Since he looks typical, I’ll sometimes give a manager a heads up: This is Ronan. He has autism. If we need to cut things short, or if we need some extra assistance, we’ll let you know. That day, I opted to not say anything about my son or about autism. Confident that he’d love every minute of our fun day out, I was sure Ronan would do well. He did great just two weeks prior at a bowling alley not too far from our home, so I expected a repeat that morning. I was sorely disappointed.
That day hurt. I had fallen hard on my hand and my tailbone. Physical pain racked my body. As positive as I tried to be afterward, emotional pain tore me up. Later that evening when I shared that day’s events online, a dear friend chimed in, “Was there video???” to which I replied, “I kinda hoped not! But then later actually thought, ya know, it wouldn’t be bad if there was a video to show the world what regressive autism does when regressive autism gets an idea in their head.”
Ronan wanted those pins down. Off he went down the lane toward the pins. Nothing I said stopped him. Nothing I did slowed Ronan down. He was hell bent. Horrified, instinct told me to run like hell after him. So, I did. With all eyes on us, including extended family who’d joined us for our fun day out, I booked it after Ronan. Right before I went down, and as my husband cautiously picked up his pace, it felt like I was moving in slow motion. Despite the radio station blasting one classic hard rock song after another, it felt as if you could hear a pin drop. It also felt as if I was watching the incident from above. Staring down at myself and at the large smudge spot I left on Lane 20, Ronan got farther and farther away.
Hours later as I rested my very sore back and the hand that I’d fallen on, I said to my sister and my Mom, “As weird as this is going to sound, I wish someone had taken a photo…not to show Ronan in a negative way…but to show just how difficult some of his autism really is.”
Mom looked at me.
I looked at her.
Without her saying a word, I knew that she’d snapped a photo of the fiasco.
My Mom didn’t view the photo, or any part of that day, as a fiasco though. She described it with humble awe telling me that, “It was photographic proof of the self-sacrificing love Ronan’s parents give to her precious grandson.”
Self-sacrificing love. I couldn’t agree more.
Every single bit of our time, our efforts, and our energy – it’s all for Ronan. We give everything. We give always. We give because we can. We give without ever expecting any thanks or recognition in return. We give because we want nothing more than for Ronan to be happy, healthy and successful.
Over the years as I’ve advocated for Ronan, I’ve had to cross the line myself. While crossing the line, I’ve broken a “standard protocol”. I’ve gone “against the norm”. Doing that more times than not, I have put doctors in their place. I have informed legislative representatives that they’re wrong, and I have told administrators not just No, thank you but NO way! Doing that has sometimes come with unfortunate consequences. But no matter how many lines I’ve crossed, and no matter how many times I’ve fallen down, I’ve gotten back up. No matter how much it hurts, I promise that I’ll always get back up again.