on time and hope
It’s been three years since our little man was diagnosed with autism, though closer to four since we knew it was coming. When I look back, it feels like time has roared by, almost like it has gone on without me. Three years? It can’t possibly have been that long. Was I really there for all of it?
I can also recall a good number of evenings when I looked at the clock at 4:00pm, again at 4:18pm, 4:29pm, and wondered if it would ever just be bedtime, so yes, I know I was there. That long days fast years thing is the truth.
When it comes to autism, time and I are in an awkward relationship. It wants to show up and live at the same cadence every single day; I want it to notice when something is good and slow down, then catch on when something is hard and, obviously, speed the heck up! It prefers sameness though, a lot like autism does, and refuses to bend to my desire for it to play by my circumstantial rules. This is mostly fine; time is given to all of us fairly every single day and there are not many things that are, so I won’t begrudge it.
Four years ago, even with the evidence of autism hovering around us, a staunch and hopeful defiance characterized most of my days. It’s hard for me to say if it was hopeful defiance or fear, actually - even though one should be able to tell those apart. I guess it doesn’t matter much; whatever the feeling was, it was near impossible to live with. I refused to google anything other than speech delay, superstitiously thinking if I typed a-u-t-... or any rendition of it into a search bar, it would make it true. I clung to every possible sign of engagement from my two year old, unsuccessfully believing one imitation of a syllable counter-acted two dozen failed attempts to get him to respond to his name. I constantly measured him against his peers, looking for evidence that his development was ‘normal’, begging my friends to tell me it was ‘normal’, cheering wildly when he demonstrated anything ‘normal’. Still the chasm grew with each month, and hopeful defiance simply could not stand up to fact.
We were going to live with this thing, this word that carried more weight than I was prepared to lift. But the first step was learning not to be afraid.
A-u-t-i-s-m.
I typed it. I bought the books about it. I cried about it, but I said it.
The funny thing is, hopeful defiance might have crumbled when it met reality, but God rebuilt it in our lives as real hope, no longer in the outcome, but in the Author of the story. No defiance necessary.
There is an old video on my phone, a dark and early January morning that I was awake with Cannon, reading his books on the ground with him. I am pointing to a mountain on the cardboard page, willing Cannon to take my enthusiasm in and speak, anything, just speak.
“Mow-nnn-ten.” I say loud and slow, holding each syllable for his ears to process. “Mow-nnn-ten.”
Silence hangs for a moment, then his tiny fingers point to the mountain and he manages a “Mmm-mmm-a. Mmm-mmm-a.”
“Good job!” I squeal in the background, so delighted with his effort, with the “m” sound coming from my silent boy.
That same video I am giddily happy in brings tears to my eyes today. Tears that I wouldn’t see what was so clear in moments like that, how profound his struggle with communication truly was; tears that I couldn’t will the words to come from his mouth, that no amount of enthusiasm on my part would bring them out; and tears that he has come so far since then, gratitude that while autism still makes sentences a challenge, he doesn’t have to fight with each syllable in that same way anymore - a luxury not everyone has. It’s moments like this when I am so thankful for both time, and hope.
Cannon is in Kindergarten today. The many, many weeks of standing at the door of the therapy room so he would not escape feel so distant as we wait at the bus stop together, no need for a tight grip on his hand or prodding to get on the bus. He waits patiently on his own. He sees the door open and runs on like he’s been doing it forever. I could not even imagine this would be possible back there in those therapy rooms; something as normal as sending your child to school on a bus were not possibilities I allowed myself to think about. But time and hope, and no small amount of hard work from all of us, and look where we are, where he is.
I am amazed by this boy. I wish I could have just a moment in his world, to see and hear and think about things how he does. I wish he could tell me everything, that we could take a walk after school and laugh and ask questions and listen to each other. It’s not possible right now. But he also points to that same book in the video and says as clear as a sunny day, “Let’s go to the tallest mountain!” and you know, a few years ago that wasn’t possible either.
Jesus answer to his disciples in John 9 about a man’s blindness has for years been our comfort and our rallying cry: “That the works of God might be displayed in him.” But more importantly, it’s been true. There is so much about our good God on display in this boy. I was so afraid of it all just four short years ago, so scared about navigating a life that promised nothing but unpredictability. I was dreading the time and out of hope. Today, holding both the moments we struggle and the moments we celebrate, and constantly seeing this boy surprise us, time and hope are two of my favorite things to depend on.