My name is Carrie.
I am almost forty-four years old. I am married to a man name Joe, and we have five kids.
As I approach the middle of my fifth decade, I am noticing more and more all the things I think, but I do not say.
First of all, my body is changing—it is getting softer and wider and doing a lot of strange stuff. It seems as though, after ninety million miles on the treadmill and hundreds of yoga classes and decent weights on the bar at CrossFit, it is betraying me. My hips and my tummy and my upper arms are not living up to their end of the bargain.
And that’s not even the worst of it. Every month, there is a horror show that my doctor tells me is the start of something called perimenopause, where progesterone and estrogen fight their eternal battle within my very soul. At night I lie, sleepless and sweaty, praying for one to emerge the victor before I simply dissolve into the fire.
I do not say this. Because no one wants to hear about the changes a woman endures with her body or her hormones or her visibility or her pride. No one wants to know about damp sheets, and unexpected rage.
No one wants to know when a woman’s body is done having babies. There is no pretty announcement in contrasting colors, or a shower with gifts and cake, or even a conversation.
Why? Why is this such a secret? I long to know. I long to know why the end of fertility is strange and eerie and uncomfortable, when the beginning of fertility is precious and tender and special.
Perhaps the worst part of it all is at the exact same time my own hormones are snaking through my body like hot, unencumbered electrical currents, I am raising a son on the autism spectrum whose hormones are equally—albeit differently—electrified.
That’s right. In my home, puberty has met perimenopause. This is an unlikely duo, to say the least. Its like the movie where Godzilla fights King Kong.
There are days when I want to eat all the food I can and have hot buttered noodles for dinner and maybe a martini and a cookie. I want buttermilk biscuits and pancakes and firmer abs than I presently have.
I don’t say this. Because this would mean I am greedy and I have no self-control and I should care more about my nutrition. I mean, abs are made in the kitchen. Everyone knows this.
At the same time, I feel invisible. You see, the work of moving a family forward every day is quiet, and unseen. No one notices what you do until you don’t do it anymore.
I want to tell this man I married that he is more than husband, father, friend, and late-night confidante.
He is my witness—my witness to all of the screams I swallowed, and the countless times I wiped down the kitchen counter, and all the permission slips I signed, and the loads of laundry I fed through a hungry washer, and the meals I made even though cooking is not something I really enjoy.
I don’t say this. Because this would mean I need too much attention and I’m not grateful for these children and after all, they should be enough, right?
We only have three more years with our firstborn son at home. You know, the one we brought home from the hospital in the car seat, and we put him on the rug in the family room and we admired his skinny birdie legs and his tiny feet. That night, he cried for hours.
It was yesterday. This happened yesterday, I swear it did. I can picture the rug in my mind as if I was standing on it right this moment. I can feel the panic in my chest because I did not know how to stop the crying.
Three years until he heads off to who-know-where, and begins a tentative life of his own. And one by one, like ducks in a line, the rest will follow.
What if they don’t remember the good things? What if they don’t remember all the times I gently wiped their noses so they wouldn’t twist away from me and felt their foreheads for a temperature and rinsed the shampoo out of their hair so it wouldn’t get in their eyes?
Please, I want to say. Remember the good things. Remember when we got McDonald’s and went to the park and we played music on the way home and sang at the top of our lungs.
Please. Don’t forget how hard I tried to make this thing called childhood good for you, even on the days I was winging it and maybe I yelled.
You see, I want them to stay my little kids forever but I can’t do this for the rest of my life and I will miss them when they are gone, as though I am missing my own beating heart. I miss them already.
And yet, my son Jack may never be independent. He’s fourteen now, and there is a chance he may never move out of the house or support himself financially or follow like the second duckling in a line of five.
This is because of his autism. It is because he has crippling anxiety and picks holes in his scalp when he’s distressed and thinks a house might cost $500 if it’s on sale.
I have a child who may never live independently. I can hardly believe it myself, to be honest.
This can’t last forever, I think to myself whenever he has a new habit or behavior, like the way he talks to himself lately, or last spring when he filled the kitchen sink with ice all the livelong day.
I would hear the clink-clink of the cubes and I would think, this can’t last forever.
But what if it does? I mean, the ice thing didn’t but you never know about the talking.
But I do not say this. Because it would mean I am giving up too soon and I don’t believe in him and we haven’t done enough horse therapy. It would mean I have given up hope.
Oh, I know all about the hope. Don’t even get me started on the hope.
Hope is the big heavy bag I strap to my back, and lug through my day until I am sweating and shaking. It feels as though it is filled with a million little pebbles.
Then there is grief. If hope is a heavy bag, then grief is a small box I let myself open once in a while, usually when I’m alone.
Inside the box are feathers, and when I take off the lid, they drift all around me, weightless and light. They float through the air and cloud my vision and whisper my truth.
He’s reading at a third grade level.
He won’t stop talking about Oreos.
He still picks at his fingernails until they bleed.
And yet, there is a third thing, in the trifecta of autism parenting.
Once I get all the feathers back in the box—which can be hard, you know—then I close the lid. I set grief’s heavy bag on the ground, and I give myself grace.
Grace is knowing this son of mine won’t cure cancer, or solve the energy crises, or figure out the answer to the immigration problem, but still, the world is just a little bit better with him in it. The universe is bigger.
Change is good.
Hot buttered noodles are good.
Yoga is good.
Grace is very good.
Carrie Cariello is the author of What Color is Monday?: How Autism Changed One Family for the Better and Someone I’m with has Autism. She lives in Southern New Hampshire with her husband, Joe, and their five children. Carrie is a regular contributor to the Huffington Post, TODAY Parents, the TODAY ShowParents.com. She has been interviewed by NBC Nightly News, and also has a TEDx talk. She speaks regularly about autism, marriage, and motherhood, and writes a weekly blog at www.carriecariello.com.
One of her essays, “I Know What Causes Autism,” was featured as one of the Huffington Post’s best of 2015, and her piece, “I Know Why He Has Autism,” was named one of the top blog posts of 2017 by the TODAY Show.