Discover more from let me tell you
I almost forgot
Or, a little celebration of Gluing the Cracks' 1st Birthday
One year ago, I published the project of my heart, a collection of essays and stories about our life with autism. I gave it the title Gluing the Cracks based on one of the essays, where I talk about my son’s autism feeling like it was breaking me. Of course, it doesn’t feel that way all day, every day. We still have the sweetest days and see so much growth. And we also still run headfirst into profound struggles. It’s both. It’s good and hard, and God is near in every part of it.
But to celebrate these stories being out in the world for a year now, I’m publishing a short essay from the book here today. This essay is one I needed to write, and it is still one I love to read again.
To everyone who has purchased, shared, reviewed, or talked about Gluing the Cracks with your people, I could never, ever thank you enough for the kindness you have showed.
And to Cannon, as always, thanks for being the strongest boy I know. Your fight is the hardest, and you keep showing up. So will I.
I almost forgot…
The months before your 3rd birthday, when I would put you down in your crib for a nap and then close the door to your room, stand in the hallway and wait, squinting my eyes to brace for the sound of your forehead hitting the crib rail. Again and again. Four, five, six, ten times. For weeks I ran back into your room to encourage you to stop, but that didn’t help. You would repeat the same amount of hitting when I left again. So I waited outside the door until it stopped, until you closed your eyes and escaped to a place in your dreams where you didn’t need to hit your head. I almost forgot about that.
The summer you were three, and you climbed on top of the furniture to stand on the cable box every day, a dozen times a day. I thought it would break at any time, but I couldn’t seem to keep you off it. I tried being angry, you climbed back on. I tried making it a game, but that made it even more of one to you. And then one day, after months and months of attempts to redirect, to discipline, to distract you from the cable box, you just didn’t climb. I never had to take you down again. I almost forgot about that.
The months during the spring of 2018 when you wouldn’t take a bath. We would wait until the dirt was visible and the smell was so bad that we had no choice but to wash it off, and then your daddy would get in the tub with you and hold you down through your sobs and protests while I washed and scrubbed soapy water all over you as fast as I could. On Memorial Day weekend we brought you swimming at the lake. Neither your dad nor I could remember the last bath you had taken, so we brought soap and a washcloth and while you swam, we made it a game to scrub your arms and legs and hair, and then used lake water to rinse you off. All around us, the evening smelled like grilled hamburgers and barbecue sauce and tangerine body wash. I almost forgot about that.
For nearly three years, we used to sneak into your room at night, after you had fallen asleep, to cut your fingernails. You hated having your nails cut so much, and it caused such a violent physical reaction from you to try to force it. We knew we were not hurting you, but it felt like we were. More than once your teachers sent a note home asking us to cut your fingernails, and every time I would feel a twinge of embarrassment and also think oh teacher, you don’t know what you’re asking. So we waited until 11:00pm, sometimes midnight, when you were peacefully asleep. We would slowly open the door and come sit on the side of your bed, using the flashlight on our phones to give us enough light to see your tiny fingernails. And there, in the middle of the night, we could trim your nails and neither one of us would cry. Finally, on a very normal Friday when you were six years old, you let me cut your nails after breakfast, as if we had been doing it that easily all your life. I almost forgot about that.
The nights that you couldn’t fall asleep. Bedtime came, quiet descended on the house as your siblings went off to bed, and that is when your beautiful mind became loud. It wouldn’t let you rest, wouldn’t let you turn off the day, the sounds, or the urges to jump and run and yell. So we turned on Dora the Explorer every night around 9:00pm, and snuggled up on the couch with you in between my right shoulder and the soft couch cushions. You always had a smile on your face when we watched Dora, the familiar sound of her voice and rhythm of her songs were your comfort and your calm in that season. I usually dozed off right there, with you on my chest. We stayed up until 11:00, midnight some nights, until your mind could quiet down, until I could carry you to bed. And then one day, you went to bed, and you stayed. Your mind was calm. I prayed for you, and you smiled. And we didn’t have to fall asleep to hours of Dora anymore. I almost forgot about that.
The months we worked on potty training during therapy. Every 30 minutes, we stopped practicing our pictures and numbers and puzzles, and we would walk down the hall, through the lobby, across the building entrance and into another hallway where the bathroom was located. But on the way, we had to stop at the plastic play slide in the lobby. And run up the stairs near the building entrance. And press the button on the elevator. And touch every number on the vending machine. And then, then you would try to go to the bathroom. On the way back to your therapy room, we did the same routine all over again. Sometimes you wouldn’t leave the elevator, often it took five minutes or more to get you off the stairs, more than once I had to text your sweet therapist to tell her we are still trying to make it back from the bathroom! And she would come meet us with one of your favorite toys or a snack to try to encourage you back to the room. Both of us knew if we forced you, pulled you, tried to carry you against your will, you would be done learning for the morning, too upset and unregulated to recover. So we let you lead, no matter how long it took. Over time, you eventually lost interest in the vending machine, then the elevator, then the stairs, and we simply went to the bathroom at therapy. I almost forgot about that.