Visits: 45
A tiny white heart marks a five-second video on my phone as beloved, one in which my boy (age 6 at the time) proudly displays a pale pink cross-body purse. He twists his torso as he flirts with the camera, asking, “Hey girl, do you like my new purrrrrrse?”
When I get a new purse, I know it will be the first thing my son notices when he sees me. His congratulatory enthusiasm (“Mama, your new purse is so pretty!”) is followed by a dimply smile and a smooth inquiry about the previous handbag (“So, can I have your old purse?”). And it’s not just about purses but bags of all sorts: Max follows this same script whenever his father upgrades his briefcase or his sister brings home a new backpack.
One day the movie “Inside Out” was on as he played, and he paused to watch the moment when the main character secretly takes money from her mother’s purse so she can run away.
“If I was in that movie,” he said, “I would take the whole purse.”
Yes, you would, buddy. This has been predictable since the little charmer was 3, when he began proclaiming his passion for baggage with an almost regal splendor and sovereignty.
His Majesty required bags, and bags he would have — diaper bags, suitcases, reusable grocery bags and more — which are packed, unpacked, repacked and toted from one location to another each day. Max’s bags have lived all over our house, in our cars, offices and every other space the boy occupies. Even now, at 9, Max often lets out a panicked, “Hold on just a minute!” when it’s time to leave so he can frantically pack a bag.
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Max’s autism diagnosis three years ago gave me an unspeakable sense of relief. When a friend asked me later that day how I was feeling, I could only describe it in this way: “I feel empty and full at the same time.”
After years of being dismissed as hysterical and overprotective, I welcomed the diagnosis as overdue validation. To be seen and heard is always humanizing, and as a woman in the world, I have confronted my own invisibility more times than I wish to recall. The diagnosis, in my mind, represented progress.
It’s a strange kind of answer that promises only more questions. But my love for my boy has never been in question — that day I felt as full as ever of gratitude for this child, even as I felt emotionally emptied out on his behalf. This is a paradox that continues. I empty myself for him and love fills me back up in overwhelming waves.
Though Max’s bag-stuffing frenzy has slowed (and we understand his neurology better than before), the state of my home, especially during his peak packing years, has reflected the state of my emotional life. The chaos was hard to accept and even harder to explain. Things were never where they belonged, which made the simplest tasks complicated. And no matter how early I tried to get us ready to leave when we had to be somewhere, we seemed destined to be late.
The moment of departure has always elicited the same desperate plea from Max — “Hold on just a minute!” — despite the savviest of strategies (and we’ve tried a lot of them). I spent years feeling frustrated and ashamed, though I knew the domestic disorder wasn’t entirely my fault.
And I knew it wasn’t Max’s fault, even with his aggressive bag-packing agenda. He would pick up a utensil here and a knickknack there until he had gathered an impressive collection of items (which would then be missing for as long as it took us to find them). Watching him pack was like seeing an artist in the magical moment of inspiration, rapturous in his focus, relentless in his resolve.
We lived among bags filled with random contents — from paperwork to produce, jewelry to juice boxes, coasters to coins — stashed around the house like little loads of hidden treasure. Max’s bags ingested the bits of our daily lives, shook them up, then spat them back out in the inevitable mess I was forever failing to clean up.
After he suffered a prolonged seizure at age 5 — he was unresponsive for almost an hour and ended up in ICU — the neurologist, MRI results in hand, told us about Max’s “migration abnormalities.” To paraphrase the doctor’s explanation, when our boy was just a wee one in my womb and his brain began forming, some neuro-stuff didn’t make it to its intended home.
As I understand it, when a brain develops, neurons are meant to travel from where they start to where they should stay. This great migration is chemically complex, and sometimes neurons don’t follow it. When neurons don’t migrate to the place in the brain where they were meant to, the result is “migration abnormalities.”
This is what’s been happening all over my house: migration abnormalities. I still encounter things daily that don’t end up where they were meant to be. In part, this is mundane and ordinary. After all, nobody lives in a space that is perpetually clean.
But there is a kind of wildness and whimsy to our home’s untidiness, an unpredictability that mirrors the neurological difference produced by Max’s migration abnormalities. Spatula in the bathroom? Bewildering. Four backpacks, two shoe boxes and an old purse stacked in my study, full of toys and trifles and important documents? Overwhelming.
Last autumn when my best friend visited, she looked at me endearingly and said, “Why are there pennies everywhere?”
I don’t know why, my friend, but I do know who.
Pennies by the pound: atop shelves, between cushions, inside containers, beneath furniture. It’s strange but delightfully so.
One of Max’s great gifts to us is this insight. To have our house mirror his mind. Although I will never be able to see the world through his eyes, I feel like our home’s “migration abnormalities” give me a glimpse into my boy’s brain. And with that glimpse comes the glimmer of understanding.
When Max was a few days old, he had jaundice. The doctor told me to breastfeed every two hours while drinking as much water as possible. Already disoriented from having given birth, I felt exhilarated and exhausted, delighted and depleted — that is, empty and full at the same time.
And now my purpose was to empty myself further to fill this new human. From the outside, I imagine my assignment looked pretty cushy. I lounged around in my softest pajamas, nursing, hydrating and watching TV. Switch breasts, switch drinks, switch shows, stifle sobs, repeat.
No doubt I appeared to be soaking up some rest and relaxation with my precious newborn, when in truth, the breastfeeding marathon was one of the most physically demanding things I have ever done.
At the follow-up appointment, when I learned that my baby had gained weight as needed, I broke down in quiet tears.
“Oh, honey,” the nurse said. “Those hormones!”
Yes, those hormones. Heaven help us, those hormones. But also, something big had happened. Max and I had survived a tough trial together. And that seemed worth a few joyful, tired tears — hormones or not. That was the beginning of a series of battles my body (and soul) would go through for this boy — battles that would be invisible from the outside but traumatic and transformative for me on the inside.
Max and I did it together. We continue to. Every time we leave a restaurant, make it to the end of a movie or leave Target without a meltdown is a mutual triumph.
Perhaps a life-or-death situation sometimes looks like lounging, or heroic success looks like hormonal instability. And maybe my boy’s magnificent mind resembles a messy house. Feats have become commonplace to my family, and despite the misunderstandings they may provoke, we know they are monumental — whether or not anyone else can see or appreciate it.
For months now, as the pandemic has raged, we’ve been cooped up at home, with Max’s routines (that he so relies on) blown to smithereens. Once he begged to drive by his school “to make sure it’s doing OK all alone.” He packs bags that, like us, never seem to go anywhere. Yet we are also all together, and he finds comfort in that.
Immense and intense, the range of emotions we experience on any one day is vast. From paralyzing anxiety to unbridled joy. From anger that fuels my advocacy to grief that stuns me into silence. From panic to presence, terror to trust, this experience of love is like none I could have ever imagined.
Empty and full at the same time, in the most meaningful ways.
