I remember the very first time I felt like a mother.
It wasn’t when I held a slim white stick with two pink lines, or when I saw a teensy little foot flicker on the sonogram screen.
It wasn’t when I felt my tummy flutter with kicks, or when I sat, plump and round and flushed, opening gifts at my baby shower.
It was in the hospital, about two hours after I delivered my first son, Joey. I was asleep, and through my daze I heard a squeaking sound, like a wheel coming off of a cart.
It was a cart. And inside the cart, or rather, on top of it, was a newborn baby all swaddled in a striped blanket. He looked vaguely familiar, like someone I’d seen before but I couldn’t quite place.
“Are you his mother?” the nurse asked sweetly. “Because this little darling needs to eat.”
I squinted at her, and then I looked at the clock on the wall. It was 3:00 am in the morning. No one had ever, in my whole life, woken me out of a sound sleep at three in the morning. Six, maybe. Seven o’clock? Sure. But not three.
From that point on, I was the mother.
First the mother of one boy, then two, then three. Eventually, the mother to a daughter, and then, when the urologist was too busy to keep his appointment with my husband, another son.
Finally, a mother of autism.
I checked the box next to mother and I wrote mother on a zillion forms and when I had to make very hard phone calls asking for evaluations and test results and reports, I stood next to the kitchen counter as tall as I could even though no one could see me, and I said, “I am his mother.”
If I had to describe what it’s like to be a mother, I would say it is strange and amazing and exciting and boring and ordinary. It’s like a lifelong song with a lot of different pieces; sweet lullabies and soothing symphonies and chaotic jazz. There are dizzying crescendos, and long solos, and sometimes, we are all out of key.
These are the hardest days of my life.
Not just because of autism—I mean, yes, obviously because of autism—but because of a bunch of other reasons too.
I am making a million small decisions that hopefully add up to decent human beings; decisions about travel soccer and organic peanut butter and dance class and screen time. I am in charge of childhood, and that scares the heck out of me.
On one hand, I don’t always want to be the mother. I know I’m not supposed to say this because I should be hashtag blessed and so happy and grateful and whatever, but it’s true.
I don’t want to be the one who figures out what’s for dinner or the one to schlep them all over town or the one to handle the hard topics like bullying and sex education and why you should cut your toenails at least once a month. Maybe more.
Some days I feel like I’m drowning in a pool without water, like I can’t breathe for the permanency of it all. I will be a mother forever, and this simultaneously delights and depresses me.
Yet on the other hand, my heart explodes with all the colors of the rainbow when I hear them laugh out loud. I guess this is why God gave us two hands. And here I thought it was so I could slice an apple and sign a permission slip for the third grade field trip at the same time.
My second oldest son, Jack, has been trapped inside of autism’s blizzard for an entire season now. It is a cycle of anxiety and anger and aggression that begins anew each day.
Sometimes, the school calls because he is too frantic and hysterical and agitated to take the bus home. When this happens, I go pick him up.
And every time I race down the long hallway and make a right into Room 19, something small and raw and real dies inside of me. Because, you see, I am the mother. And he, my son.
If I had to describe what it’s like to be a mother to a child of autism, I would say it is strange and amazing and exciting and ordinary.
I would say it is never boring.
I would say it’s like watching someone who is perpetually out of rhythm try his hardest to dance with the world.
All this time, I thought if I could just reach inside the storm and grasp his fingers in between my own, I could pull him to safety. I see now that I was wrong.
Lately though, he’s turned the corner just a little, and taken tiny steps forward out of his tempest and into the warm spring air. If I wasn’t watching him so hard, so carefully and vigilantly, I might have missed it altogether.
It wasn’t because of my tireless devotion, or my excellent parenting skills.
It wasn’t my panic, or my desperation, or all of my Google searches.
It wasn’t my magical maternal powers.
It wasn’t my love.
It was medicine.
I had to decide whether or not my son should take more medication to alleviate some of his most challenging autism symptoms, because I am the mother. A bad good confused scared lonely mother.
Jack doesn’t have the wherewithal to weigh the pros and cons of the long-term effects of an SSRI against the short—and possibly long—term effects of deregulation and tantrums at school and bone-crushing anxiety.
I had to make a decision for him that he cannot make himself. And it’s kind of a big decision, one with lots of controversy and judgment and research, one with a somewhat unknown ending.
We have decided. And so, every night, right before he scoots under the covers and surround himself with his six pillows and cradles his favorite bunny in his left hand, I call him over to me. I say softly, “Jack, it’s time for your medicine.”
Now, on top of the small white anti-anxiety pill, I give him an even smaller green pill to swallow. He does it without question. Perhaps this is what hurts the most.
I am the mother.
Actually, he did have one question. While we waited at the drive-through for the pharmacist to send the small orange vial through the stainless steel window, he asked me, “Is this to take. The autism out of me.”
I leaned over the car’s center console and I took one of his hands in both of mine.
“No, buddy. No. You will have autism forever.” For a second, I couldn’t breathe, for the permanency of it all, the unfairness of it all, and the delightfulness of it all.
It’s been a week now since he first started the medication. His body is just the slightest bit calmer, his movements a little less spontaneous and jagged.
During dinner one night, he turned his gaze to his sister Rose and looked her right in the eye and asked, “How was it. How was for your day. At school.”
I caught Joe’s eye, and we smiled quietly at one another.
And Saturday morning, he slept until after 8:00. Not 5:45, or 6:02, but 8:19 am. In his almost twelve years, this has never once happened—not a single time.
He stumbled downstairs to the kitchen where Joe and I sat, drinking coffee.
“I sleeped. Until so late.”
“I know, Jack! How do you feel?”
“Good. It is for good.”
It is for good. Because of this little green pill, my son is starting to take back some ground, despite autism’s willful, dogged determination. The cycle is not broken exactly, but for the time being, there is blissful interruption.
We aren’t done yet. We still have a long road ahead of us, trying to untangle the sticky spectrum knot inside of my Jack-a-boo.
The next step is a neuropsychological exam, and I have already begun the process—checking boxes and filling out forms and attending intake exams, trying to describe the everlasting music that plays deep within my son.
Last week was my first appointment, on the third floor of an office building.
I was sitting on a low brown couch, and when I looked up, a young woman was standing in the doorway. She was holding a folder in both hands.
“Are you here about Jack?”
“Yes,” I said, rising from my seat. “Yes, I am his mother.