Today, I Love You
Today, I love you.
I can’t say I love you every minute of every day.
But today, I do.
I love you even thought you made me really, really mad this morning.
You remember, when our 12-year old son Jack was screaming and running through the kitchen. He was furious because he didn’t want to go back to his summer program.
I saw you glance at the clock on the stove, and I followed your gaze and I realized it was 7:37 and we had exactly three minutes to corral him into the car so you could drive to the school a couple of miles past your office, and make it back in time to see your first patient at 8:30.
He kept running away from us. We couldn’t catch him.
We agreed you would drop him off this morning. We’d agreed on this because last night he’d already started complaining that he was not going back to the summer program ever, it is stupid, autism is stupid, and he just wants to be normal.
He is calmer for you. I don’t know exactly why, but he is. He thrashes around less and he walks to the car when you ask him to and he doesn’t scream swear words or tell you he hates you.
Today, I love you.
I love you even though you snapped at me to let you handle it on your own, and you said it would be easier if I would just leave the kitchen and go upstairs and give you space so you could get him to the car and calm him down.
I know you are right. I know this. I know my just being in the room makes him more and more inflamed, like a volcano on the brink of explosion. But I am the mother.
I am the mother, and when he cries I cannot leave. It is primal. It is instinct. It is some kind of maternal devotion that defies explanation.
I cannot leave when he screams, “I’m NOT. FOR GOING TODAY!”
Or when he cries,“I REGRET IT. This AUTISM.”
Or when he flaps his hands around his head and says, “I just want for to be. Like everyone else. With no summer school.”
We thought we were over the hump, didn’t we? We both thought the worst was behind us this summer, because for the past two weeks he’d been getting out of the car on his own and walking into the building without any help. He even went away camping for two nights.
Now, this.
I love you even though you glared at me when you walked out to the car with one hand firmly on his shoulder. I love you even though you closed the door extra hard—your way of having the last word after a long, weary morning.
I was furious-frustrated-sad when you left like that. I stood there, in my black velour bathrobe—the one you like to tease me for wearing because I bought it when Henry was born almost eight years ago—and I didn’t even know what to do with myself.
I felt empty, and lost, and hopeless.
I felt the way I always do when you and me and Jack are caught in autism’s Bermuda Triangle; mother-father-son adrift in the raging spectrum sea.
I made things worse. I made them worse when all I wanted to do was make them better. I wanted to hug my tall boy and ease his pain and tell him it was going to be okay and remind him I had packed his favorite graham crackers. Instead, he’s still mad and now you’re mad and I’m sad. And a little mad, too.
We are so different, really. We always have been. You are calamari to my caramel sundae; an early-morning riser to my late snooze.
I like the beach. You prefer the lake.
You are Italian with dark hair, and I am Irish and fair-skinned.
You hate to read, yet nothing makes me happier than a good book.
You are the father and I am the mother. You teach, I soothe.
I long to understand what it feels like to go to a summer program every day while everyone else is lounging on the couch and eating cereal out of the box.
You show him how to change the oil and calculate the price of grapes if grapes are on sale and when it’s time to go to school, you tell him it’s time for school.
I try to put myself in his shoes, and you give him shoes to fill.
I have known you since I was nineteen.
And even though we’ve come so far—we’ve made it through five newborns and then five toddlers and the diagnosis and the anxiety and we’re learning how to communicate and talk to each other and really listen, not just hear—I know still, the next five years or so could be our hardest.
Maybe a new school, or more medication. His perpetual self loathing, and an ever-widening gulf between him and not-him.
It’s the stuff people don’t like to talk about; the way autism and adolescence ignite one another into a raging, desperate inferno.
Even us. You and I, we seem incapable of stretching our hands to the fire and feeling the heat of our imminent future.
I mean, how do you parent this together? How do you mother and father a boy who hates who he is and regrets what he has, even as we both love him and hurt for him and hope with him?
There is only so much stress a marriage can take and survive. Will we make it? I don’t know. I think so. I hope so.
I hope so.
Today, I love you.
I love you even though you never sent me a text in the morning like you usually do, and then when I didn’t get the text, I understood. We were in an autism standoff. You thought I was wrong and I knew you were wrong and because of this, there were no texts.
Still, I love you.
I love you because you did the drop-off.
And six-and-a-half-hours later, I did the pick-up.
When I picked Jack up, he was buoyant and happy and calm. He got in the car and talked to me for a few minutes about gardening and how they painted flowerpots made out of clay and then they planted radishes.
“What is the difference. Between red radishes and white radishes.”
“Uh, I’m not sure, buddy.”
“What. Do radishes taste like.”
Driving out of the parking lot, I felt a flash of guilt because you had the sullen-adolescent-morning Jack and I had the chatty-afternoon-radish Jack. But then I remembered I was mad at you and I didn’t care.
“They taste kind of spicy. Well, they’re crunchy. I don’t know how to describe it. They’re unusual.”
“What is. For unusual mean.”
Our hardest years are ahead of us.
Today, I love you. I love you even though you wanted to be the father when I wanted to be the mother. I love you even though we carried our grief separately like colorful buckets of very red paint and we did not text each other, even once.
After the long morning and the angry glares and the pick-up, I went into Jack’s room to put away some laundry. I saw his phone on his bed and I picked it up and I read his text to you and your text to him.
Jes Grey-Haegler
August 1, 2016 @ 12:46 pm
With every entry I am inspired by your big soft heart, your love for you children and all that has come with being a mom. You are stronger than you think, you are wiser than you feel, and you will conquer every wall that is put up in front of you. To know you is to feel you words of honesty, compassion, and wisdom that come from each strike of a key. Thank you for allowing me to see the inside of the life of you. HUGS!
bethany Kays
August 1, 2016 @ 12:51 pm
This was so touching.
GP
August 1, 2016 @ 1:09 pm
At my child’s therapeutic summer camp, several children who are on the spectrum go to camp with their neurotypical siblings. Not sure if Jack’s siblings go to camp, but if they are not, you may want to consider sending them to camp as well, even if it is not the same camp and even if it is just one sibling at a time. I know I would have felt very, very left out if my siblings got to stay home with mom while I had to get up early and leave for camp every day.
It also sounds like he has started to associate “autism” with negative emotions. I wonder if it would help him if you moved the emphasis on specific things he needs to learn or do because he is Jack and because well, everybody needs to learn and work on self-improvement, autism or not. A chart with a few self-improvement goals for siblings and parents may help him realize that we all have things to learn and room to grow. It may help take the focus off autism and redirect him towards moving forward. Charts like that are nice because they can be a great tool for teaching problem-solving skills and for empowering one’s children to take charge of their own challenges. It would be important to also list each person’s greatest strengths so that the children learn and internalize that they have many strengths to be proud off.
childshould
August 1, 2016 @ 4:50 pm
So this is beautiful and now I’m crying. I have blog-stalked you for a while, checking in to your posts now and then. I have always thought you were one of the best writers out there doing this autism-parent-blog thing. Now that I have finally started my own autism-mommy blog, I’m happy to connect with you. Thanks for writing! -Katie Read, http://www.childshould.com
Tammy McVey
August 2, 2016 @ 1:21 am
I loved this because….sometimes its hard to love our spouse when they are stumbling or are going a complete different direction because we look at autism differently. The other day Nash and I had a big stupid argument but still had to deal with each other because we had to go to a store. He was doing really well and while at the check out line I asked where he left autism. He smiled but didn’t answer because that is a question that takes more than he can give…except a smile. I said did you leave him in the produce department with Mark? Or the yogurt aisle with Steve? Or in the car so he can just deal with the heat? Nash then said….he stayed at home. I high fived him and thanked him for leaving autism in the car. And then we giggled…we hate autism.