The Extraordinary Ordinary
Tonight I took Holt on a scooter ride. He was getting too tall for old one and June was showing more and more interest in learning to ride, so we ordered the next size up for Holt and dropped the handlebar back down for June to start to learn. Holt’s new scooter came equipped with LED light up wheels so he was pretty insistent on taking it for a night ride to check them out. As we wheeled off our sidewalk and into the road we came across a squirrel that hadn’t beaten a car in their journey across the street. It was the first time Holt had seen a dead animal in the road and he was very taken back. He pushed himself forward alternating between asking, “did you see my wheels mama?” and stating, “a car didn’t stop for that squirrel mama.” I walked and he scooted and we talked about the hows and whys of the various fates of squirrels when crossing roads and the importance for us to always stop for or just plain get out of the way of cars ourselves. Holt would pause to digest and then ask another question, sometimes about the moon, the house we were passing, his scooter, and then back to the squirrel.
It was an ordinary night, 20 minutes of an average Wednesday that I’ll likely never forget. We had started our day with Holt’s annual visit with pediatric neurology, a visit that we did every 3 months during his first year, which eventually moved to once a year. Holt’s diagnosis of Dandy Walker Malformation is only that, a diagnosis. There is no exact list of expectations that come along with it, but rather a long list of possible challenges with a ‘wait and see’ listed next to them. Will he be able to walk unassisted? Wait and see. Will he be able to run, balance, climb? Wait and see. Will he have language delays? Trouble swallowing? Wait and see. Every specialist appointment in the first couple of years put me on edge because every appointment brought back the memory of Holt’s diagnosis. That was the day we were presented with the long list of “wait and sees” for our son. I realize now, that becoming a parent is actually one giant wait and see. The traumatic, put you on edge at every doctor’s appointment, moment was when so many wait and sees were presented at one time instead of gradually, over the lifetime of parenthood.
Holt’s neurology appointments consist of him talking to the neurologist while he asks specific, guided questions to see if Holt’s answers are developmentally appropriate or there are any behaviors that would trigger some kind of follow up. We talked about what Holt was doing in school, he watched him play and walk. We spent the majority of the time talking about parenting tactics for strong willed kids. At the end of the appointment our doctor said words that I knew I’d one day hear but had taught myself not to expect, “I don’t think you need me anymore.” He reassured us that he’d always be there if something came up, but no further follow ups needed to be scheduled.
My breath rattled, I was only able to pull in little patters of air at a time because my heart, body, and mind couldn’t decide if I should scream in excitement or burst into tears. I got the breath in and I got it back out. Holt walked over to show the doctor a wooden hammer head shark that he had just gotten, told him his name was Hangry and the appointment ended.
When we were in the hospital after Holt’s surgeries, Steve and I had gotten in the practice of both writing down what doctors told us during their rounds every morning, monitoring and updating the care that Holt was receiving and the whys behind it. When they’d walk out of the room, we would compare notes to make sure we heard what we thought we’d heard. We were both living in survival mode and it was easy to instantly black out something that was too painful to hear. As Holt’s neurology appointment ended, I looked at Steve and confirmed that he heard what I did, “did you hear? no follow ups.” He looked back at me, “yep, no follow ups.”
After Holt’s appointment, I dropped him at school and went about my day. I worked late and when I got home I found Holt and June in the backyard in their PJs, fresh out of the bath. Holt’s scooter had hit the front porch while they were upstairs getting ready for bed and the excitement was too much to put off until morning. June’s tank was running low so one parent needed to take her up to bed and one escort Holt on his night ride. Holt kindly asked that pup pup, our 7 year old labradoodle, put Junie to bed but settled for only Mom being able to come with him on his ride. As he scooted along in both silence and squirrel inquisition, I soaked in all the “wait and sees”. His right foot balanced on the scooter, his left strongly propelling him down the road, and finding periods of complete flight as he pulled his left foot behind his right and glided along completely balanced.
Holt caught me taking a video of him and he asked, “what are you doing mama?”
“taking a video of you.”
“why?”
“because I love your new light up wheels and you’re doing a great job”
…and because one doctor, one specialist said there was nothing more to wait and see and that felt ordinary and ordinary can feel extraordinary.
