My mother urged me to put everything in God’s hands. That passivity angered me. You really fucked up! Our first night together, we slept in a king-sized bed. It’s like he’s in a hurry to live life, full speed ahead. “Who are your cousins?” the doctor asked. Inheritance
By Norma Liliana Valdez
May 10th, 2018
The first and only time I ever spanked A, he was five months old. There were people, including my mother, who thought what I was doing was unhealthy and they were probably right. All of them experienced devastating levels of vision and/or hearing loss, among other symptoms. My response was an absolute no. J and I, we each retreated to our own lonely grief. The diagnosis broke us in ways I’m still trying to understand. I didn’t know my body was capable of such mourning. I panicked.
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. That love had a quantifiable limit. The same loving dynamic that kept us tight-knit and safe from external harms also estranged us from the potential of ourselves. We spent our wedding night chauffeured around by his brother-in-law. But I neglected S. I’d wake up to a repeating nightmare. 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. His tender heart fearful as mine.
A was able to gain admission based on family priority. I started dating him when I was seventeen and of course, my mother immediately liked him. 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. It was already nighttime, maybe 9 p.m. The day the call came, I had plans to take the boys to the circus. It’s not just diabetes. “Why do you ask?” she said. And what if the child is not healthy? It felt natural. Painting that toy was the only thing that soothed me.
On June 6, 2006, A was clinically diagnosed with Wolfram Syndrome and S was confirmed to be a carrier of the gene.
My genes run milky with ruin.
Sometimes I wonder if those crying fits were a precursor of what was to come. Saturdays were spent in Oakland at the compadres’ house. More from this author → My mother, especially, held tight to home. He seemed fragile to me. 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. 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. And her secret loves? 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. Our entire social life revolved around family. We stayed until it became awkwardly uncomfortable and instead decided to head out to the airport for our late morning flight to Cancun, where we’d spend our honeymoon. I gave her names and the look on her face quickly became somber. 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.
I have a vivid memory of A at two years old, waking up at night crying with a fearful tone and rubbing his eyes. She accompanied him to every class he ever attended as an undergrad at UC Berkeley; some thought she was his personal attendant. At a work-related training, a colleague and now friend asked if I was a poet. High school has brought challenges for A, but also opened up a different world. On the outside, I took care of everything. I close my eyes with his. I think he was just scared. Sleepovers and birthday parties were always with cousins, never friends. V, who was only one year younger than me, had died the year before at the age of thirty-four. Surviving motherhood means being more than mother. He deserves better than this! Is this not a gift? I called J at work and begged him to come home early. the cempazúchitl
were veils of gold. I wanted to take away any shame.
The farther the pendulum swings towards sadness and grief, the farther its capacity to swing towards deep joy and love. They are the women who show up for me every day: mothers, soon-to-be mothers, never-will-be mothers. 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. After El Gorila,
motorcyclists circle inside a caged orb–
El Globo de la Muerte. 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. 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. He didn’t see the benefit of us knowing something that might take years to manifest. My husband J worked night shifts and didn’t get home until after 2:30 a.m. My aunts and uncles had kept the real culprit to themselves. The trembling I feel right now means that I’ve got a lot of work to do on this, and it’s work I know I’ll do on my own, not in partnership with J. I was home alone with him and his older brother S who was three at the time. He grew up in my parents’ hometown. In our family, we knew this to be diabetes. When my glass would run over, I’d hide my secret loves, keep them to myself like handwritten letters at the bottom of a drawer. He’s also decided to join the track team, all the while maintaining straight As. I begged her to tell me, it was only fair. What your cousins have is a rare genetic syndrome. I was left with three quarters of the bed to myself. I didn’t address the taboo embedded in A’s question: the fact that his father and I are related. However, this was problematic because it split me in two: the good daughter Norma, and the hidden Norma. I’m not quite sure where I got this idea but it may have had something to do with my parents’ immigrant experience. At first he is gentle, shakes his head like a toddler. And even though that wasn’t true, I knew why he said it, and he was right to say it. He didn’t want to talk about the disease, or connect with other parents, or talk about what was going on. This still tears me to pieces. When he was in seventh grade he told me directly that he felt I loved A more than him. 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. I could hardly contain my love at the rim. She is an alumna of the VONA/Voices Writing Workshop, the Writing Program at UC Berkeley Extension, and was a 2014 Hedgebrook writer-in-residence. 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. Since A’s diagnosis, I’d been dealing with the depression by writing in a journal, spilling out all of the fear and anger. How it burns incessant prayers. I’ve become another ancestor
to pass on the wreckage.
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. I went at it alone. There’s something to relish in this way of loving, an exhilaration all my own. “¡No puedo ver, mami!” I mistakenly blamed his impaired vision on the fever. He’s a wise kid, but how do you tell a child an obvious truth that would mean the erasure of his own existence? We’ve held so much of our pain in that kind of silence.
Recently, A asked me if I would have married his father had I known back then what I know now about myself. All of the grief I’d restrained since the diagnosis surged in a swell unlike anything I’d ever experienced. It propelled me to a joy I hadn’t known. He blows kisses to the ladies, holds one of them
in his robot hand. His vision has deteriorated slower than I feared, and with glasses is correctable to 20/40. I had three cousins who were diabetic, two of them siblings. Then what?
The diagnosis broke us in ways I’m still trying to understand. Return to the billowing gray. It would take three months to get back the results. You haven’t done enough for A! I’d give him a little peck on the cheek then turn him away. That one should only dole out measured amounts to selected people. I found myself parked in front of San Pablo Bay near some railroad tracks, actually not far from my house. 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. I waited a year to do it. Most of his symptoms are invisible to the naked eye.
When I was young adult I used to think love was like a glass of water, with a rim. I had to strive for a full and splendid life if I expected them to be able to do so. He’s now a high school freshman, and S has received his first college admissions offer as a mechanical engineering major. I expected us to sleep in each other’s arms, wrapped in newlywed bliss but when bedtime came he kissed my lips goodnight and turned his back to me. It sounds so cliché, but this writing life saved me. Return to the doctor’s call confirming the diagnosis. All those “no”s eventually add up until there’s an imaginary line that splits your bed.
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. How it consumes me. 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. The endocrinologist and I had agreed on how she would share the results once they came in. 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. He was in a miserable state and all I could do was give him Ibuprofen, the only medication that brought down his fevers.
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
lying next to
I was twenty-one and J was twenty-six when we got married. I have a clear memory of J and I crying silently together side by side in the kitchen, leaning against the counter. 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. Actually, I lost my shit. We were trying to keep quiet because we didn’t want the boys to hear us. 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 didn’t know my body could do such a thing. 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. 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. I plunged into a two-year depression. Not so secret anymore. We’d hold hands in public. Hecha en México, Norma Liliana Valdez made her way to California in her mother’s pregnant belly. The codes in my DNA splintered generations ago. We didn’t have sex.
& this is how we danced: shadows lifted
from the streets, mid-January turning our hunger
into plums, ripe in our palms. 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!). 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. He grunts, then roars. 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.
I married a man who is related to me. It’s through my writing life that I’ve been able to access her. He’s constantly harassing me about travel opportunities. Actually, I think this might be a lie I tell myself to excuse the missteps of my marriage. 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 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. She choked on an almond cookie. They are my sisters in blood and poetry. The training was experiential and we were sharing a lot of writing with one another. 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. The first few days after the diagnosis were surreal. I can’t pinpoint exactly when it started to happen but sometime after the diagnosis I became acutely aware of the damage our genes could do and felt myself retreating from J. It’d been four nights in a row of crying fits that lasted an hour each. Not bad! Technically, I was still a virgin (a good Mexican daughter), having never consented to go “all the way” with him but that night I was still bleeding from the birth control pills I’d started only three weeks before. Please, dear God, not my son, not
my son. A truer statement might be that the diagnosis didn’t break us, but rather broke me… open. your whisper was night
through my hair—my hair, a river’s current
we spelled our names in heartbeats
& spilled ourselves like bracken waters. Maybe he had an eye infection.
In 2006, there were no labs in the US screening for Wolfram Syndrome. If I received a personal phone call from her it meant bad news. In his own special, cocky way he told me I was and suggested I take a writing workshop. I was less consolable than he was. At least that’s what we were told. Sundays, after church, were at Abuelita’s. My youngest turns away, buries his face
in the groove of my clavicle. I took care of shit. 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. For survival’s sake, I had to free the hidden Norma. 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. He used to come up behind me and put his arms around my waist, slip his hands onto my thighs. Not just any circus but a visiting circus from Mexico whose feature was a giant gorilla, a mechanical King Kong. 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. She was surprised by the question and responded that these were not common symptoms. 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.
On March 17, 2017, A received admission to his first-choice high school. 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. We’d failed to book a hotel room and couldn’t find one at 1 a.m., so instead we went to my parents’ house, where I was still living. And this changes everything. ***
Rumpus original art by David Dodd Lee. He lost a lot of weight, which he really couldn’t afford to lose. Her younger brother had a kidney transplant in his early twenties because a neurogenic bladder had led to kidney failure in his teen years. He didn’t. J and I inherited the gene from a common ancestor. 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. He was in the school’s drama production in the fall and is preparing for the spring musical. My son. We still did this when the children were little but gradually we stopped. Two of them had been her patients. A member of the Macondo Writers’ Workshop and a CantoMundo fellow, her poems appear in Calyx, Huizache, Tinderbox Poetry Journal, and Latinas: Struggles & Protests in 21st Century USA, among others. J had been against the genetic testing initially. The message was no one can love you like your family, no one.
The term of endearment we used for each other was mi chula or mi chulo.