Three Days Gone
A few weeks ago, I chatted with a father I know who also has a son with autism. In fact, they had just put him into full-time residential care. He told me about the year-long process to find the right place, and the profound sense of loss so deep, it felt like a death.
Just before we parted, I asked if I could write about their family and their son. I told him I wanted to reveal a little about the process and the loss and the uncertain future we all face on this spectrum journey. He said that would be okay.
So I went home, and I did what I always do when I ask if I can tell someone else’s story. I panicked.
I mean, how could I possibly capture the angst in making the decision to send your child away? How could I carry their heartache in my hands and explain the emptiness and the guilt?
How could I describe the giant hole full-time residential care rips in the fabric of a family’s tapestry?
How could I express there is a community standing tall and straight and proud behind each of them, in quiet solidarity?
As a mother, how could I write from a father’s point of view?
So, I did what I always do when I’m panicking.
I ate a billion Wheat Thins.
I ordered a jacket from Zappos. I mean, fall will be here before you know it.
I straightened all the curtains in my office. They’re drapes, really, and they hang to the floor, and the kids mess them up every time they walk by the windows.
Finally, I sat back down at my desk. But instead of typing the post on my laptop, I dug an old notebook out of the bottom of a drawer. For a little while, I doodled and I made some notes. Then I wrote a letter.
Three Days Gone
To my son,
It’s hot here. There hasn’t been much rain, and the grass behind our house is dry and yellow.
You have been gone for three whole days.
I miss you. I miss you so much I have a lump in my throat all the time.
See, for fifteen years, you were the center of our universe. We orbited you. Now, we wander around aimlessly, without purpose. We are planets adrift in a sunless sky.
I turn the corner, expecting you to call out for me, or tell me a math problem, or ask for help in the bathroom.
I wake at two, three, four in the morning and retrace our steps down the hallway—walking the same path I’ve walked hundreds of times before, with my hand on your shoulder to guide you back to bed.
In the late afternoon, I sit on the back deck, and I squint into the brightness. I think about how you insisted we let all of your balloons go on your birthday this year. I try to pinpoint exactly where they landed in the clouds.
I open the freezer and see a bag of your favorite chicken nuggets.
I empty the dishwasher and put your favorite blue cup—the only one you wanted to use—back in the cabinet by the sink.
I pass your room, and my heart freezes still.
It’s been three days since we dropped you off at a residential facility an hour away.
You are three days gone.
I miss you. I miss the way you giggle, and your loud voice echoing off the walls. The silence defeans me.
You are everywhere. You are the ghost of my waking thoughts—so tenuous and fine as to slip through my fingers. You are the darkness of my restless sleep.
I can’t help but wonder what you are thinking, my larger-than-life yet younger-in-spirit boy. I mean, we did all the social stories and the planning and we bought you a new comforter and we circled the date on the calendar.
We told you how and where and when, but we could not find the words to tell you why.
Do you think we gave up on you?
We are not giving up on you.
I will never give up on you.
I love you.
I love you so much there is no way to tell you.
And sometimes, when you love someone, you have to look deep inside of yourself and consider if you are the best choice.
I rocked you as a baby, and I held your fingers when you took your first unsteady steps across the family room.
I fed you applesauce, and pulled a hat down over your ears when it snowed, and lathered sunscreen on you in the summer.
For the rest of my life, I will wonder if we made the right decision. I will wonder if we shouldn’t have kept you here with us, in your own bed, in your own house, with your own family.
At the very same time, I know we had no choice. Mom and I both knew this.
I mean, I never thought it would come to this. I never thought we would need to move you to a home beyond our own.
Even as I swept shattered dishes, and we bought plastic cups to replace the ones you’d broken, I hoped.
Even as I hugged you tight until your rage subsided and we both slid to the floor, breathless and spent, I hoped.
Even as you screamed and hit and bit and cried, I hoped.
I hope. Still, I hope.
Three days gone.
Yesterday I grabbed my keys off the counter and headed to the grocery store. Before I walked out the door, I started to call your name. You always came with me to the grocery store. It was one of the few places you could tolerate, as long as it was a quick trip.
I almost called and then I stopped myself because you aren’t here anymore. You don’t live here anymore.
Except for the grocery store and school, we spent much of our time isolated from the outside world, bound together by balloon strings and shiny shards of glass.
Now I am trying to do fun things with your brother, to make up for the lost time when we orbited you but maybe left him in the sunless shadows, even though we love you both but you needed us more.
I wonder if there will ever be a time in my life when I don’t hear the steady rhythm of guilt in my ears—when regret is no longer the tympani of my background, or the orchestra of my every waking moment.
I don’t know what to tell people. When they ask me how you are doing, where are you and do you still love math, I don’t know how to explain that autism got the best of us and we couldn’t handle the aggression or the dishes or the screaming or the wandering or the toileting or the nighttime waking any longer.
I am your father. I am supposed to handle the aggression and the dishes and the screaming and the wandering and the toileting and the waking. This is my job.
I wasn’t able to do my job.
This is what hurts me the very most. My job is to protect you and love you and help you.
I love you.
But it’s also my job to give you a chance.
The thing is, it didn’t feel right to keep you here, fighting fire after autism fire, when there are people who are specially trained and experienced with this tricky disorder—people who can offer you round-the-clock therapy and help you cope and give you structure because they aren’t trying to keep half an eye on e-mails and dinner and the electric bill.
This was the hardest decision of my life.
I have to give you a chance.
They say it will get easier.
No matter where you live, I will always be your father. And you, my beautiful son.
July 16, 2018 @ 12:44 pm
Wow. I am so blessed. The ‘only’ separation anxiety I have to deal with is explaining why I am going to ‘take Jesus’ to ladies in the health center and explaining to my my spectrum daughter why she can’t come with me the first time because I’m learning how to do it and I’ll be home in less than two episodes of her favorite show–while she’s bawling her eyes out because I may as well be going on a 17 year trip during which time she won’t see me. Oy! And me trying to avoid bawling my own eyes out.
Dad, you ARE doing your job, you ARE protecting him and you DO love him because you got the very best residential care for him. That is your best and it’s pretty damn good that you are strong enough to know your limits.
Thanks, Carrie, for your writing.
July 16, 2018 @ 1:33 pm
Beautiful and so sad….
July 18, 2018 @ 4:18 am
Dear Dad. I cannot imagine what you and your family are going through with having made this incredibly tough decision. But I do know how hard severe Autism is. I wish you and your family only the very best on this new journey ahead and just remember that you are only doing the best you can.
July 20, 2018 @ 8:10 pm
38 days gone. I’m dying inside trying so hard to Trust God’s plan and will. I see him and try to assure him of my love but he wonders why. I see it in His eyes. His violence toward his brother also autistic and me was too much. Never never in my wildest imagination could I have for seen this horrific reality. 38 days Every heartbeat agony.
August 29, 2018 @ 9:35 am
My son has gone into supported living……hurts like hell but I know it’s the best for him to get some bit of independence …me and his dad won’t be here for ever were already in our sixties…..
June 18, 2019 @ 1:29 pm
Thank you for writing this entry. You put into words what my heart feels. My daughter has now been in a facility for 7 weeks and I would love to say the pain is gone. It is easier, but there is still a piece missing. I don’t miss the violence, the swearing, the constant watch. I love being able to sleep in my bed vs. the floor. I love giving my other 2 children the attention the need and deserve. I miss her smile, her laugh, her brilliance, her radiance. I know we did the right thing. Like you wrote, we gave her a chance. Thank you for your gift of the written word. Through this piece I can communicate to others what my heart is going through but can’t form into words.