The first and only time I ever spanked A, he was five months old. It’d been four nights in a row of crying fits that lasted an hour each. I was home alone with him and his older brother S who was three at the time. My husband J worked night shifts and didn’t get home until after 2:30 am. The crying fits triggered postpartum hallucinations, the worst being images of throwing the baby against the wall, and stabbing my head repeatedly with a large kitchen knife. I’d try to console A by gently swaying him in my arms as I paced up and down the hallway but I was on a desperate edge and the gentle sway quickly turned into an angry rocking, a shut the fuck up under my breath. I feared I might throw him against the wall so instead I placed him in his crib, gave him a good spanking, went to the extra bedroom down the hall, and scream-cried into a pillow. I was less consolable than he was. I called J at work and begged him to come home early. He didn’t.
Sometimes I wonder if those crying fits were a precursor of what was to come.
I have a vivid memory of A at two years old, waking up at night crying with a fearful tone and rubbing his eyes ¡No puedo ver, Mami! I mistakenly blamed his impaired vision on the fever. Maybe he had an eye infection. He was in a miserable state and all I could do was give him Ibuprofen, the only medication that brought down his fevers. It would be a few more months before I finally paid attention to all of the symptoms (lethargy, thirst, frequent urination, blurry vision), and only because my sister pointed them out to me. A was diagnosed with insulin-dependent diabetes, also known as Type 1, on January 16, 2006 at the age of two years and eight months. The first few days after the diagnosis were surreal. I’d wake up to a repeating nightmare. In a dramatic display of catharsis, I threw out all of the sugar we had in the house, we hadn’t yet met with the nutritionist so I didn’t know shit about A’s condition, didn’t know that sugar was necessary to keep him alive. On the Friday after the diagnosis, many of my family members came to the house to show their support but I spent the evening in the living room painting a wooden train with S. Painting that toy was the only thing that soothed me.
On one of our visits to the endocrinologist I asked her what percentage of kids with Type 1 are affected by vision and hearing loss. She was surprised by the question and responded that these were not common symptoms. Why do you ask? she said. I had three cousins who were diabetic, two of them siblings. All of them experienced devastating levels of vision and/or hearing loss, among other symptoms. V, who was only one year younger than me, had died the year before at the age of 34. She choked on an almond cookie. At least that’s what we were told. In her final years, she lived an isolated life, cared for at home by her mother, unable to see or hear well enough to be independent. Her younger brother had a kidney transplant in his early 20’s because a neurogenic bladder had led to kidney failure in his teen years. My other cousin, T, was legally blind by high school, which meant he couldn’t check or treat his blood sugars independent of his mother because she was the only one who knew how to care for him. She accompanied him to every class he ever attended as an undergrad at UC Berkeley, some thought she was his personal attendant. In our family, we knew this to be diabetes. My aunts and uncles had kept the real culprit to themselves.
Who are your cousins? the doctor asked. I gave her names and the look on her face quickly became somber. Two of them had been her patients.
What your cousins have is a rare genetic syndrome, it’s not just diabetes. She refused to tell me the name of the condition because she was afraid I would go online, research it, and discover the destructive nature of this incurable, neurodegenerative, motherfucker-of-a-disease. I begged her to tell me, it was only fair. She hesitated before saying the two words that would take me years to utter without a tightness in my throat: Wolfram Syndrome. She offered to set up the boys for genetic testing.
When I was young adult I used to think love was like a glass of water, with a rim. That love had a quantifiable limit. That one should only dole out measured amounts to selected people. I’m not quite sure where I got this idea but it may have had something to do with my parents’ immigrant experience. My mother, especially, held tight to home. Our entire social life revolved around family. Sleepovers and birthday parties were always with cousins, never friends. Saturdays were spent in Oakland at the compadres’ house. Sundays, after church, were at Abuelita’s. The same loving dynamic that kept us tight-knit and safe from external harms also estranged us from the potential of ourselves. The message was no one can love you like your family, no one.
My genes run milky with ruin.
The codes in my DNA splintered generations ago.
I’ve become another ancestor
to pass on the wreckage.
I didn’t know my body could do such a thing.
I married a man who is related to me. I started dating him when I was seventeen and of course, my mother immediately liked him. He grew up in my parents’ hometown. Still, when she tried to admonish me that I was dating her second cousin, in my seventeen-year-old wisdom I replied, “He’s related to me the same way you and my father are related, the same way my uncles so-and-so are related to their wives.” And so she dropped it.
In 2006, there were no labs in the US screening for Wolfram Syndrome. A’s pediatrician and endocrinologist made arrangements for the boys to have their blood drawn in Richmond, California and shipped overnight to a lab in Antwerp, Belgium. It would take three months to get back the results. J had been against the genetic testing initially. He didn’t see the benefit of us knowing something that might take years to manifest. I think he was just scared. I was, too, but believed that it was better to know either to clear our concerns or to be on the lookout for symptoms as they arose.
The endocrinologist and I had agreed on how she would share the results once they came in. If I received a personal phone call from her it meant bad news. The day the call came, I had plans to take the boys to the circus. Not just any circus but a visiting circus from Mexico whose feature was a giant gorilla, a mechanical King Kong.
After trapeze, life-threatening feats, and godforsaken clowns,
the robot-beast arrives draped in black velvet—
El Gorila Gigante in spotlights of lavender and gold.
At first he is gentle, shakes his head like a toddler.
He blows kisses to the ladies, holds one of them
in his robot hand. He grunts, then roars.
My youngest turns away, buries his face
in the groove of my clavicle.
His tender heart fearful as mine.
I close my eyes with his.
Return to the doctor’s call confirming the diagnosis.
Return to the billowing gray.
How it consumes me.
How it burns incessant prayers.
Please, dear God, not my son, not
my son.
My son.
After El Gorila,
motorcyclists circle inside a caged orb–
El Globo de la Muerte.
On June 6, 2006, A was clinically diagnosed with Wolfram Syndrome and S was confirmed to be a carrier of the gene.
J and I inherited the gene from a common ancestor.
we wrestled lonely
with our gods
as if a kind of medicine
desire no longer
our most alluring gravity
what happened to impulse
to just for the joy of it
when did we become
a person
lying next to
another person
The diagnosis broke us in ways I’m still trying to understand. I have a clear memory of J and I crying silently together side by side in the kitchen, leaning against the counter. We were trying to keep quiet because we didn’t want the boys to hear us. We’ve held so much of our pain in that kind of silence.
I plunged into a two-year depression. On the outside, I took care of everything. I was on top of the latest medical research, made contact with other Wolfram families, took A to all of his doctors’ appointments, and enrolled him in a five-year clinical research study at a university in Missouri. I took care of shit. But I neglected S. When he was in seventh grade he told me directly that he felt I loved A more than him. And even though that wasn’t true, I knew why he said it, and he was right to say it. This still tears me to pieces.
J and I, we each retreated to our own lonely grief. He seemed fragile to me. He lost a lot of weight, which he really couldn’t afford to lose. He didn’t want to talk about the disease, or connect with other parents, or talk about what was going on. I went at it alone. There were people, including my mother, who thought what I was doing was unhealthy and they were probably right. My mother urged me to put everything in God’s hands. That passivity angered me. Maybe I wouldn’t be able to control how this disease would manifest in my son’s body, but damn it, I’d be able to influence how he thought about it. I wanted to take away any shame. I wanted to teach him to see beyond the physical boundaries so that his spirit might soar, so that he might live a full and splendid life.
I started writing when I was thirty-nine and by started I mean I signed up for a poetry writing workshop having never read, studied, or written poetry in any serious way. Since A’s diagnosis, I’d been dealing with the depression by writing in a journal, spilling out all of the fear and anger. At a work-related training, a colleague and now friend asked if I was a poet. The training was experiential and we were sharing a lot of writing with one another. My response was an absolute no. In his own special, cocky way he told me I was and suggested I take a writing workshop. I waited a year to do it. I waited until I couldn’t stand the depression anymore and had begun to look into serious ways of healing myself because it finally hit me that I had to be well in order to take care of my children. I had to strive for a full and splendid life if I expected them to be able to do so.
It sounds so cliché, but this writing life saved me. It propelled me to a joy I hadn’t known. Surviving motherhood means being more than mother. It means intentionally cultivating loving friendships, creative spaces, and time to grow in profound ways so that we can show up for our children, renewed and strengthened.
The diagnosis broke us in ways I’m still trying to understand. Actually, I think this might be a lie I tell myself. A truer statement might be that the diagnosis didn’t break us, but rather broke me… open. And this changes everything. The diagnosis not as curse or burden, not as culprit for our failures but as rebirth, as self-discovery, as a plunging into the depths of love and self-reckoning, as who are you and what are you made of. Is this not a gift?
Recently, A asked me if I would have married his father had I known back then what I know now about myself. He’s a wise kid, but how do you tell a child an obvious truth that would mean the erasure of his own existence? I stumbled through my answer but responded truthfully because that is the kind of relationship I have with this wonderful child of mine (I also hate “what if” questions and he knows it!). I acknowledged that I would’ve missed out on the magic of him and his brother, that there is absolutely nothing wrong about having a child with a chronic illness.
I hate it when pregnant women are asked whether they’re hoping for a boy or girl (which is a problematic question on its own) and the answer given is it doesn’t matter as long as the child is healthy. And what if the child is not healthy? Then what?
I didn’t address the taboo embedded in A’s question: the fact that his father and I are related. As I write this, I’m trying to understand if I’ll ever be able to let go of the remaining shame of this, if I’ll ever be able to forgive myself for passing on this inheritance to my child.
On March 17, 2017, A received admission to his first-choice high school. I was on a weekend trip with some poet friends for a reading we were doing in Los Angeles and missed the deadline to register him for classes. I didn’t realize my mistake until five days later when I went online and the registration system had closed for the highly sought-after high school.
I panicked. Actually, I lost my shit. After leaving voicemails for the admissions director and sending her and her assistant an email explaining my error, I got in the car and drove around aimlessly. You really fucked up! You haven’t done enough for A! He deserves better than this! I found myself parked in front of San Pablo Bay near some railroad tracks, actually not far from my house. It was already nighttime, maybe 9 p.m.
All of the grief I’d restrained since the diagnosis surged in a swell unlike anything I’d ever experienced. It had absolutely nothing to do with the high school and everything to do with the limits of grief a body can hold, with a reckoning of all my failures. It took nearly eleven years for it to come up from the deepest recesses of me and spill out in sobs, in pounding chest, in screams, in every form of lament I could bear. I didn’t know my body was capable of such mourning.
The farther the pendulum swings towards sadness and grief, the farther its capacity to swing towards deep joy and love.
A was able to gain admission based on family priority. He’s now a high school freshman, and S has received his first college admissions offer as a mechanical engineering major. High school has brought challenges for A, but also opened up a different world. His vision has deteriorated slower than I feared, and with glasses is correctable to 20/40. Not bad! Most of his symptoms are invisible to the naked eye. Admittedly, things haven’t been easy but I see him striving for what he wants while negotiating the multiple daily tasks he must undertake to remain as healthy as possible. He was in the school’s drama production in the fall and is preparing for the spring musical. He’s also decided to join the track team, all the while maintaining straight As. He’s constantly harassing me about travel opportunities.
It’s like he’s in a hurry to live life, full speed ahead.
& this is how we danced: shadows lifted
from the streets, mid-January turning our hunger
into plums, ripe in our palms. the cempazúchitl
were veils of gold. your whisper was night
through my hair—my hair, a river’s current
we spelled our names in heartbeats
& spilled ourselves like bracken waters.
***
Rumpus original art by David Dodd Lee.
