My Bright Sky
Hi.
My name is Carrie.
I have five kids.
My second son, Jack, is diagnosed with autism.
I used to think the hardest part of autism was the day we got the actual diagnosis—the day I walked into the cold rain of a November afternoon, and attempted to zip my squirming toddler’s jacket.
I was wrong.
I’m wrong a lot, if we’re being honest here.
The hardest part is now.
Sure, a lot of it was hard—the nights when he didn’t sleep, the long days chasing him around and making sure he didn’t turn the stove on or run straight out the door and into the street, the late-night discussions about whether or not we should start medication.
These days, life is moving fast for our family. Three of the kids are teenagers. My oldest son, Joey, just got his driver’s license. He went to Taiwan for two weeks.
Joey and Jack are thirteen months apart. When they were little, they shared the same room, and every night I would lay them in their cribs and kiss their foreheads.
Now, my two oldest boys are so different, it’s as though they aren’t even the same species.
One went to Taiwan with a foreign exchange program.
One held onto my arm when we crossed the parking lot.
One flew over the North Pole.
The other fussed about what kind of peanut butter to buy.
One is starting to think about college. He drives his father’s Sequoia. He rows for the crew team.
The other sweeps floors for a non-profit after school.
This is the gift/curse of brotherhood—the proverbial sword of two edges.
The gulf is widening. It’s like trying to raise the sun and the moon underneath one roof.
I expected this. Of course I expected this.
To expect it is one thing. To experience it is another.
Experiencing it is a little like taking the double-edged sword and shoving the point underneath your fingernail.
It doesn’t bleed a whole lot.
It’s not bad enough to go to the emergency room, or even call the doctor.
In fact, other people hardly notice it.
But it hurts like hell.
The thing is, I grew these two boys in my own body. I fed each one cereal from a small plastic spoon, and I pushed them around the neighborhood in a giant double stroller until my lower back ached.
I fiercely loved them both.
They should be the same.
They are anything but the same.
I fiercely love them both.
Yet, as I stood in the aisle of the grocery store while Jack rubbed his fingers along the side of his face and debated if Skippy was better than Jif, I felt a surge of rage so powerful, I turned the cart around and walked away.
I thought about Joey traveling to another country and Jack standing here holding a jar of peanut butter in each hand and how he, too, is in another country—a country called Autism Spectrum Disorder.
Oh, they’ll let anyone in this country! You don’t even need a passport. You just need some wonky genetics, a lack of filter, and an affinity for grocery stores.
Who could he have been, without autism’s sticky fingers leaving messy imprints of rigidity and anxiety all over his brain?
A baseball player, catching fly balls for the town league while the sun sets long and warm across a new spring sky?
An exchange student traveling across the world?
A musician? A husband? A father?
I mean, I’m not asking for much. I don’t need him to be the next Mozart, or the CEO of a start-up company.
I just want him to be happy.
I want him to have purpose.
And I want him to move out of my house one day.
There it is. I said it. I said the forbidden words.
I want him to move out of my house and live on his own and I will visit him and we will have dinner together and maybe I will help him hang some curtains, but I cannot do this forever.
And yet, I will.
I will do it because I love him.
I will do it because he is my son.
My beloved, mysterious son.
I don’t think there will be any curtains.
And he wants the curtains. That’s the very thing. He wants so much for himself, and right now, it all seems vastly out of reach.
Is this the weight of raising an unusual child? The constant comparison of who he is, versus an imaginary version of who he might have been?
I am trying to stop doing the comparison. I really am. It’s not fair to him and it’s stupid and I am wasting my time, but every once in a while, it happens.
We are making the best of it. I want you to know this. We are teaching him practical skills and showing him how to change the oil in a car and what to do if the water boils over the pot when he’s making spaghetti.
But what about other, more complicated lessons?
Lessons about loyalty, and love, and humility, and grace?
Maybe the hardest part is not today, or the day of the diagnosis, or the jacket-zipping.
Maybe it’s the not knowing.
It’s not knowing where he’s going to live.
Or what he’s going to do.
It’s not knowing who I am, as I navigate a life alongside this tricky spectrum disorder.
Who can tell?
I am wrong a lot.
In the aisle of a grocery store, I was wrong once more.
One brother flew back home across the world, while another brother stood balancing loyalty and love within his hands.
Joey. He likes. Skippy better. For when he gets back today. To us.
There is more than one path to a life with purpose.
After all, the sun and the moon both share the same sky.
It was blue. His jacket. He kept trying to run from me, even as the raindrops dampened our lashes.
Fiercely, I love.
Erna Elizabeth Naert
May 6, 2019 @ 10:50 am
I get it – it seems unfair. I was (operative word) the mother of a 15y/o who inhabited his own place on the spectrum. I would give anything to have him back , and worry about peanut butter. He passed away in December , and all those things we worry about? Meaningless. Jack is here and he tries in HIS way to make sense of a world that doesn’t make a lot of sense. You are blessed with very interesting and warm wonderful children. Let go and let God take Jack under his wing. Every step he takes is progress.
ahoch248
May 6, 2019 @ 4:01 pm
OMG it’s as if you read my mind! I love your posts and treasure what you share and delve into each week. Hugs!
terismyth
May 10, 2019 @ 2:05 am
Kind of funny how I’m reading how you want Jack to move out and come back to have dinner with you.
Tonight my son came home and had dinner with me and my husband. I texted him and told him i was making his fav pork fried rice. He said “yes.”
Then my husband and i proceeded to question him about whether he has been looking for a full time job, or whether he has decided to finish the projects from the coding camp.
It had to be done. He’s been loitering around in no particular direction and doesn’t ask for help. We want to help, but he has to help himself first. It’s not easy raising these kids. Mine is 26 already and even though he graduated from college 2 yrs ago, he still doesn’t have the courage to look for work. We’ve helped him, but not enough i guess. It’s frustrating for us, yet i know he wants us to be proud of him.
And so it goes. We’ll see if our chat tonight brings change. Maybe things just take time.