As is our way, we were running a few minutes late. The receptionist is kind and assures me that anything under 20 minutes late is kosher. I check us in and settle in on a mini couch next to the fish tank.
Waiting rooms feel like home. We’ve spent cumulative months of time together in them, I’m sure of it. We’ve turned waiting into an art. A pox on doctor’s offices that don’t provide waiting room wifi. After a few minutes, they finally call us back.
My husband and I have spent more than our fair share of time in these rooms waiting on a professional to deliver some kind of news. We waited to be told that we were expecting a precious daughter. We waited to be told that the limp I had developed over the period of a few months was actually a massive bone tumor. We waited to find out if my bone tumor was cancer. We waited over and over again to be told that my tumor was back, and then again that it had peppered my lungs with scads of baby tumors. We waited to be told that the son we were finally able to conceive after years of fighting said tumor was blind. We waited to hear that he had come through surgery alright. And now, this:
We waited to be told that our son has autism.
The muddy process that we had to wade through to finally receive this diagnosis took around eight months. During this time we’ve watched our son turn more and more inward. The change in him from when his pediatrician first started to suspect something to now has been significant. I’ve heard that this is common. It’s not unusual for there to be a shift around this age.
Uncertainty seems to be a theme. There are behaviors called “blindisms” that can look a lot like autistic behaviors. There were so many weekly meetings with therapists, teachers and specialists all tossing around guesses, opinions and hypotheses. This is a cruel kind of illness. I find myself longing for something like a broken bone. Injury, imaging, treatment; done. I can nurse my child through a broken bone and watch him come through ok on the other end. I can’t nurse him through autism.
We were sent home with a huge folder fat full of fliers and phone numbers. There’s a “Dear Parent” letter and it reminds me of a letter signifying the end of a relationship. Here’s the relationship you thought you would have with your child, and here’s your new reality.
Switching up our expectations when it comes to Kodo is nothing new, but visual impairment felt different. Aniridia takes away one of his senses, but autism seems to take away his spirit.
The newness of it all still stings me numb. We carry on with therapy appointments and Easter preparations. There are, mercifully, two other children to tend to. My children remind me to dutifully continue placing one foot in front of the other. There’s work to be done at this stage, and much of it is mine. I’ll enjoy being the one to do the work while I’m still able. Soon enough it will be Kodo’s turn.