I Will Sit With You in the Dark
[May 9th, 2020]
Dear Jack,
Sixteen years ago today, you exploded into this world—nine pounds, three ounces of squirming pinkness. Daddy cried, to meet his new son.
Today, you are over six feet tall. Your shoes look like canoes.
You aren’t sleeping.
I hear you moving around the house all night long—into the bathroom and down the stairs to check the lights and back up to your bed again.
All day long, you are restless, and unsettled, and exhausted.
You are battling an invisible warrior and I can’t figure it out and it is making me feel deep sadness.
So for now, my son, I will sit with you in the dark.
When you were eight, I started this silly blog about you and your autism and our life together.
Some people didn’t like it so much. Some people thought I shouldn’t talk about your diagnosis—that it was a disservice to who you really are. One woman suggested I keep it a secret. She leaned so close to whisper this to me that I could smell her gum.
The thing is, keeping your autism a secret would be like trying to hide a wildfire, or quiet a songbird’s hymn.
And honestly, at the time, I didn’t know what else to do. So I wrote. I wrote in notebooks and on napkins. I wrote on the back of paint samples from the hardware store, and on post-it squares. I have a drawer full of scraps in my nightstand, scribbled in the middle of the night. I wrote to make sense of who you were, and who I was becoming.
I wondered if I was crazy.
I wondered if you really could outgrow this.
Mostly, I wondered if there were other people like me out there.
People who would read our story, and see their own paint-splattered heartache between the words. And maybe, for five seconds, we could all feel a little less alone.
Time and time again, autism has brought me to my knees.
It has brought out the worst in me.
It has brought out the ugliest side and the shouting side and the tears.
Maybe also the best side, but it’s too soon to tell.
You made me a writer.
You made me an advocate.
You made me change everything about myself I thought was shiny and important, and turn it into something good, and whole.
You made three brothers and one sister think, and wonder, and listen, and hear.
Sixteen years.
The truth is, you haven’t slept in weeks.
When you were just a little boy in your first big-boy bed, you didn’t sleep well. I took you by the hand and led down the hallway, back to your room. Three, four, five times a night I did this.
I did it because I thought I had to, can you see? I thought I needed to teach you to sleep so we could all sleep. We thought we needed to teach you how to sit at the dinner table, and talk quietly in the library, and sit still during Mass.
Maybe I did need to do those things. Maybe I didn’t.
I regret it but also I don’t and I’m not sure how to explain it.
Maybe it nudged you into the teenager you are today—one who can cook a meal and empty the dishwasher and shake hands when prompted.
I’ve many mistakes—too many for me to count. One day, I hope you can forgive me.
People say you aren’t capable of it—forgiveness. Research says you don’t experience the same swingy emotional pendulum like the rest of us do. I’m not so sure about this.
I think you are very capable of forgiveness/empathy/joy/pride. It will come, when you are ready.
For now, Jack-a-boo, I am ready. I am ready to sit with you in the dark.
When your eyes snap open at 4:00 am and your body can’t find stillness, I will sit with you.
You were born with autism embroidered upon your DNA—the wild yarn of a newfound tapestry.
Yet you don’t give up when it comes to something you want. I admire this more than I can ever tell you.
Sixteen is big. It is important. For many, it is the year of a driver’s license and a prom and tours around leafy college campuses.
I’m not sure you will drive this year, or even next year, or the year after that.
In fact, your younger brother Charlie may drive before you. I told you this when we were in the car the other day and you didn’t say anything or even look in my direction. It was as though the words bounced right off you like Teflon.
For now, I will sit with you in the dark.
I will do something I have never done before. I will listen for your early dawn awakening. I will get up, and join you in your itchy restlessness.
I will sit with you through broken dreams, and altered expectations, and the beginning hours of another day.
Autism is not your fault. The not-driving is not your fault. I would give anything to see you wear a tuxedo for the prom, and carry boxes into a dorm.
Mostly, though, I want to see you smile again.
I am tired of worrying. I never, ever stop worrying.
I will sit with you, in the dark.
Together, we can sit in silence.
Or we can talk.
I will sit with you until the sun rises once more.
It will, you know.
It will rise from the darkness, orange and bright. It will bring new dreams, and fresh hope for this gentle life. You’ll see. You will find your fire, and sing your own song.
A new year begins for you, my son.
My sun.
You are not a secret.
Maybe Dad. Can show us to drive. Together.

May 11, 2020 @ 8:58 am
Beautiful! I love how you love him.
May 11, 2020 @ 10:22 am
You never cease to amaze me and I am sure thousands of others walking through this journey. We are sitting with you in the dark. Thank you for being here.
May 11, 2020 @ 11:50 am
Thank you again Carrie. I don’t comment much, but have been following you ever since I found Jack’s “color for each day.” My girl is 35 and has a different, but in some ways, similar situation, with seizures early on, severe muscle control issues that limits mobility, and sleep problems . She has no communication except smiles, grunts and nods, and can’t use adaptive tools either. Her learning ability is very limited, but generally super happy. She enjoys pretty much anything on TV, but doesn’t respond except for smiles and laughs (loves slapstick) and helps people cry when they tear-up. Been alone with her since desertion by birthmother at age 7, but it has still been a joyful journey. Almost all of the time I’ve felt completely alone in making decisions, with no earthly help, but God’s been in it all the way. Had to move her to group home a year ago due to my health, but mostly that is working out well for us. I do miss her terribly all the time, so hang on to Jack as long as possible. Blessings to all.
May 11, 2020 @ 1:28 pm
I am thinking of you and your beautiful Jack. I’m sorry he isn’t sleeping. My Louis turned 14 last weekend. And we are coping with hurricane strength bouts of angry raging that seemly come out of nowhere. I wish I was home in NH, but now live far away. But I am with you in spirit. I thank you for your blog and your open sharing of your life, Jack’s life, your family, your thoughts. So tragic that anyone would say to keep anything a secret. Those days are loooooooong gone. I hope the sun keeps shining on you all. x – Allison