My son’s DNA is rainbow colored.
At least I proffer that it is as I hold a pink pencil in my hand and draw twenty-three pairs of chromosomes on the page one by one.
It has taken me weeks to color in the specks of humanness—variant hues the same shades as cupcake sprinkles. The page feels alive. My tears are starting to pool.
The lamp is on. Nearby, the old record player loops and Bruce Springsteen sings to me.
Side One, Track Four: “Two Hearts”
But if you don’t put faith in what you believe in
It’s getting you nowhere.
Faith.
It suddenly reminds me.
I put my hand in my cardigan pocket, feeling for the long silver necklace with the pendant of St. Michael. Instead there’s a matted tissue with hardened edges. I used it to wipe the drool from Theo’s chin earlier today. In my sweaters and coats, there are always tissues in pockets. For the drool, for the food that repeatedly collects in the corners of his mouth.
He’s away from here now, picked up an hour ago by his father. When they left, I poured vodka and seltzer over ice and took out the sketchbook and pencil sharpener.
Recently, I came across the black and white genetics report, dated June 2014. Laid out in all their stark monochromatic truth, his chromosomes appearing as squirrelly little jewels, each one a unique brooch of magical molecular data which somehow translates into my son’s two feathery eyebrows, the long, sinewy torso, the legs and feet that slap the ground with a remarkable and unpredictable rhythm which I’m certain would make Philip Glass curious.
The other day I took Theo to walk the stairs in the park. Going up, he alternated his feet and took one stair at a time. At times, there’s a semblance of normalcy.
Going down, he fully hesitates before each step and then only advances his right foot in front of him. When we get to the bottom where there are trees, he holds on to the trunk with his whole body as he navigates around the roots with a sidestep and then another. This is the truer depiction of how we proceed: one step and stop, at a time, no matter the direction.
I glance back at the report, choose a lime green pencil.
This is the DNA of the sprightly creature who adores his mother and father, who cannot speak actual words of love but demonstrates these facets of emotion with an endless barrage of bear hugs and headlocks and sloppy cheek smears and hand holding.
My son is a tiny giant who would prefer not to hold the fork, or the spoon, who wants to make the zipper zip and sometimes does. He has a fraction of self-awareness, yet is wholly present and committed to the things and the humans he needs. He works diligently for the rewards that matter. Everything else is an endless fate of small negotiations with the world outside.
He is seven, and tall for his age. People comment on his handsome features often. I realize his father’s looks are a harvestable topic of discussion to detract from other more serious things which are less easy to talk about. His strange exuberance. His gait. His inability to stay still.
Strangers ask him his name. He looks away.
They wait.
He makes no move to touch his talker and interact. Then he smiles, gazes up at them again, looking very much like a normal kid who’s naturally curious at the presence of someone new.
They ask again, as if he might be hard of hearing.
I let the game play out. I’m always interested in how far it might go.
His face invites conversation, but the dialogue is eventually punted to me. “What’s his name?”
I respond.
“Do you ever call him Teddy?” is what they all seem to say.
When he’s upset, I say: “Show me what you need,” and he will often grab my wrist or walk ahead and stand in front of the TV or the fridge or the cabinet where he knows I keep the sweet apple rings and other snacks. Or he’ll point to the fruit bowl. There are times he will just collapse in my arms, downtrodden, because there is no way for him to explain, and he knows I don’t always understand.
Sometimes, he will grab my keys and hold them in an outstretched hand, and if I wait too long he will put them in his mouth as a strange act of defiance.
Things very often end up in his mouth. The dolly’s hair, the small broom handle, the tea bag he snatched from my cooled mug next to the couch, the necklace with the St. Michael pendant he dropped at my feet. I think that was Theo’s subtle way of saying I should really be more like St. Mike—the patron saint of safety and protection—and mind any small shiny things out of reach of children with profound sensory issues.
His hands return to his mouth often. He’s cutting a tooth, and I can see he’s uncomfortable. With his sour smelling pointer finger, he used his talker to tell me he has pain.
Like a chess player, I try to be predictive about the things he is drawn to, the things that might cause harm or wreckage, but my ability to stay two steps ahead of him is sometimes hijacked by fatigue or mindlessness. There are times when pausing a moment for myself often means having to clean up a bigger mess later.
Recently, I stayed in the living room to watch a Gilmore Girls episode and Theo was down the hall and quiet. I realized the screaming silence too late. There was coconut flour all over the floor of the kitchen and his bedroom. He was splayed on his back, as if making a snow angel.
I thought to myself: What would Lorelai Gilmore do right now?
I cued up some Dolly Parton music and swept it away.
Last week in the park, where I was taking a solitary walk, a father calls out to his son, who has the same name as my child. “Great job, Theo. Way to go!”
The boy looks to be about four, and has just successfully navigated his tiny body and his tiny bicycle across a very wide, frenetic road full of runners and bikers and skateboarders. To complicate matters, there were also many dogs on leashes looking ready to clothesline small humans who might get in the way.
It felt foreign and fascinating to watch this father watching his child with a general level of admiration and expectation. I noticed that the experience was filmed by the child’s second father.
The dads didn’t look the least bit worried; there was full confidence their Theo comprehended the necessary pace and turns and acceleration required to cross a busy road. They were certain.
Unlike me. I held my breath the entire time.
We tell our Theo great job for when he uses his talker to communicate or pees when encouraged or brings his plate to the sink (also when encouraged) and turns off the lights when he leaves a room. Sometimes to be funny he will turn the light back on and then run away.
When we got the diagnosis of Angelman Syndrome, we were told he would never walk, talk or know love.
And yet, he continues to become all the things they said he never would.
I’ve been told by many smart people in doctor’s coats that his brain is beautiful and his DNA is pretty alright when it comes down to it. That is, except for the microscopic blank spot on the fifteenth chromosome which nature randomly forgot to fill in. I think about that chromosome sometimes as having a sign on it that says, “Closed for business. Sorry for the inconvenience.”
You’d never think that the tiniest bit of missing molecular minutia would cause so much difficulty for one person: a sleep disorder, occasional full body seizures, ataxia, apraxia, developmental delays and a wild card of profuse happiness. People don’t believe me when I tell them that my ex-husband, Theo’s father, proactively diagnosed our child by doing a web search for “happy baby disorder.”
In a time where every answer is a search engine field away, the reasons for my son’s condition—a random, chromosomal mutation which causes certain maternally derived genes to function improperly or be silenced—cannot be fully explained. Since the paternal chromosome is typically inactive in the brain, this stray silencing of the maternal gene plays out in a multitude of consequences.
This is the diagnosis that says:
He will be happy, but his voice will be quiet. He will live a long life, but he will not be conditioned to sleep. Or ever live alone. He will walk, but it will take much time and much effort.
“It is what it is,” happens to be a favorite phrase of a relative of mine.
This mantra may just be the closest I ever get to radical acceptance of a heart-cracking mystery.
True to what his genetic evidence suggests, my child laughs and smiles often. He also raises his eyebrows in quiet surprise at random moments, which makes me wonder if he’s in on a joke that’s about to go down. A joke where I am sure to be the last to know.
But the laughter … it’s regular and without reservation. Laughing when he wakes up, when he should be asleep, in the shower and riding in the car. He’s a random laugher. His elation is often unpredictable.
He once walked into the open door of a church and laughed as a casket was being wheeled in the door. The mourners stared.
When I look at other children who are Theo’s age, typical children, I am always in awe of their certainty and of their nascent ability to negotiate and compromise. I am in awe that they aren’t tethered by an invisible leash to a parent just a few feet away. I am in awe that they can dress themselves and they can draw and write and conjure small verses of poetry about the big world around them.
I am in constant awe of my son, but the reasons are so very different.
He is his own language, we are the translators of meaning.
He is brazen with his affection and erratic in his gestures. Other times, he is erratic with his affection and dangerously brazen with his gestures.
His brain waves don’t meander like mine but are a seismic dance of sharp peaks and plunges that wail their way across the EEG screen. He is the innocent host of a random genetic fluke, constantly trying to rectify that pushes and pulls of an abnormal nervous system with the rules of the typical world. He fails every standard test presented to him, the tests that educators use to examine competency and skill level. He is champion, however, of an auto-didactic curriculum: tests of repetition, tests of endurance, tests where sleep is shunned and joy is agency.
To know Theo is to know that he has his own internal spinning compass and it will always draw him to the unexpected: a dense plenum of trees, the ditches full of weeds, into the sand and towards the water. I have no certainty that my son would remain beside me on the sidewalk without straying into traffic, or, if my back was turned, that he would stop before leaping into the pond.
I half expected his DNA results to state that he is part cephalopod. When he’s in motion, he drifts along like a happy octopus, my nickname for him. His arms and legs fly and flap to demonstrate, perhaps, the mighty spirit that’s within. He bends and squats and rotates and bobs when he dances, as if music awakens a parade of birds in his soul, flying on unusual drafts of wind.
I don’t always suppress the catharsis that tears bring, but try to hitch my outlook on the wild gaiety that’s threaded into the genetic fabric of my son’s disposition. He is a continuation of me, and I am an extension of him. Without one, there is no other. I try to bank this emotional currency to buoy me through the darkest pockets of time when the all-encompassing exhaustion takes its toll.
I wrestle with this notion of constructive transference often as I wrestle to dress my only child.
When I came across this genetics report, it struck me how incredibly dull and lifeless it all seemed when, in reality, my child is exceptional in ways very few understand. It only felt right to tint things towards the truth of who he really is.
It took many hours of copying his DNA from the genetics file onto a piece of paper, the chromosomes redrawn and newly adorned in pointillistic dabs of color. I paused at number fifteen.
If helping him cope and thrive and live a more independent life was as simple as coloring in the blank spot on this chromosome, would I do it?
I shuffled the vinyl, flipped the record one last time. I color in the last strand of DNA.
Springsteen croons “The Ties that Bind” (Side One, Track One):
We’re runnin’ now but darlin’ we will stand in time,
To face the ties that bind.
Sometimes I don’t know if we are running or standing still. Either way, the ties that bind continue to move us along, together, whether we think we are ready or not.
Theo is back home and next to me now. He takes my hand to help him navigate a step forward and I am reminded that if he is the rainbow, that makes me the sky.
The picture is now complete.
The worms of identity radiate off the page the same way my child radiates whenever he enters a room. And when there’s time, I will take the art to the framing shop and I will have it preserved in pieces of glass and wood and I will hang this interpretation of my son’s strange and incredible identity in the hallway outside his bedroom as if it’s a sign that says “Glad you’re here. Take a seat. Stay.”
Cover Art by Sarah Alwasseif
