Forgetting Aiden
by Cyndy Cendagorta
When I search for my son in a song, no words say what I would sing for him, if I could sing. No lyrics speak to who he is to me, only the ones I write in my mind when I hear something beautiful and heartbreaking. My son, Aiden, who has intellectual disabilities, is his own song that I had to learn to be his mother. It’s now a part of my DNA, something I could never forget.
We humans write about love, we sing about loss, we write lyrics about drinking and drugs and sex. We write about our trucks and our dogs, but to find a song that speaks to the ache a mother feels when her child is different, is “other,” is like finding a new star. It is only by accident, or by having a telescoping ear big enough to hear that one verse out of so many that sings to your lived experience, that you can say, that is me. What song can express the mix of love and loss, anger and guilt, grief and joy this child brings? What song can narrate a life invisible by most standards, to most people, but so bright and textured to his mother? The answer is something I recognize in myself in moments of quiet contemplation. Sometimes, when I hear the soaring notes of a movie score, with no words, just instruments, it sounds like Aiden. Sometimes, when I recognize him in a piece of music, I weep.
I don’t want to write about Aiden very often. I don’t want to tell you anything about him, so he can be only mine. When he is mine, when he is simply a boy, when he is my boy, we are free. We are safe. When I tell you about him he becomes muddled in words, those blunt instruments, that don’t do justice to the complexities of any human, let alone a person who cannot accurately tell his own story. The pressure to get it right, to tell him well, to sing him as he should be, is sometimes overwhelming.
When I am with other special needs mothers, Aiden comes alive in my speech, the verses are understood. They nod and smile, they know him as I do, a starfish of a son, a fractal of a boy. They know me, too. They know me as I hope to be known, for what is real, for who I am. They see that I fight for him in the fact I am standing upright in front of them. They know that at one point, I would only lie down and cry. They know that for years, the panic, the anxiety, the closed walls of PTSD would make my world smaller and darker. They see that I am reaching for the light, trying to remember what hope looks like, trying to forget the fear. They understand this, and their understanding is kindness, much needed.
When you have a child with special needs you keep getting up, because he needs you. You get him treatment, every day, even when you need treatment too. Someone’s need is a wondrously frightening thing, heavy and laced with humanity. Real need, the kind that a poor mother sees in her children’s eyes, or a mother of a sick child sees in an awkward gait, creates loving monsters out of us. We will fight you in court, on the street, or the playground, if we have to. It is not something we are always proud of, rather something we know at a gut level. They say newborn babies can identify their mother by smell alone, the bond is that powerful. It is a deep knowing beyond the senses though, love for a child. It is a wonder, and it sometimes scares me. I worry the fear and the panic might sweep me away.
One Christmas Aiden and I were walking out the front door, the walkway covered in snow and ice, heading across the street to the neighbor’s. Aiden had his iPad in his hand, his constant companion since he does not have many actual friends, and I told him to watch where he was going because the roads were slick. Aiden walks on his own, but is uncoordinated and often falls.
As we walked out the door, a woman in a big coat with fur around the hood yelled at me. “You need to clean up your fucking sidewalk.” She was pushing a stroller, moving slowly through the snow that was left on the sidewalk.
“I’m sorry I didn’t shovel,” I told her. “I just had knee surgery and my husband is out of town.”
“You are a pussy,” she yelled back. “You should be ashamed of yourself.”
Aiden said, “Mommy, why is that lady mad at you?”
“It’s nothing baby, she is just saying hello,” I told him. I started singing “Deck the Halls” as loudly as I could, moving Aiden’s attention from the conflict, which he would not understand and would only upset him, to happier things.
“Deck the halls with boughs of holly,” I sang out, gripping his elbow so he didn’t fall down the driveway.
The woman was undeterred. She stopped the stroller and screamed at me, “You fucking bitch, I’m talking to you. Stop singing. Why don’t you come over here and sing that to my face? I will beat your ass.”
I was shaking at this point, scared of what she might do. Scared that Aiden might see me get hit by this crazy woman on the snow in my upscale suburban neighborhood. I could just see him screaming, hands clutching his iPad, eyes wide. My blood pressure soared and I realized, with a sinking fear, that if she heard Aiden talk, she would know he had disabilities. Though he speaks in full sentences, he has a speech disorder and loud speech that makes his disability obvious. If she knew he had disabilities, she would discern, in an instant, that he is my Achilles heel, and she would say something cruel. She would call him retarded, she would say, “You and your retarded son.” She would wound us both.
I kept on singing, to keep Aiden quiet, to keep the voice in my head to a low roar, to drown her out. Slowly, Aiden and I walked across the street. My neighbor, Amy, opened the door and asked what was going on. She could see that I was upset. The lady with the stroller was still yelling, taunting me, from up the street.
“Go home,” I yelled up to her. “You have your baby with you, for Chrissake.”
She continued yelling obscenities, calling me awful names, threatening me, making her way up the road.
I watched her go, Aiden safe in the neighbor’s house, and tried to calm down. Amy told me to let it go, that it was just a random event, that it was all right. But I wasn’t all right. The panic came back, and the medication came out again, a trusted source of calm I couldn’t summon for myself.
That night, kids tucked in bed, I couldn’t sleep. I played the whole scene over and over again, trying to understand why the woman was so angry, playing out just how far she would have gone to hurt me in front of my son. All because of a snowy sidewalk.
I lay awake with the sickening knowledge, that had she said one thing about Aiden, one small mocking word, that I would have lost my mind. That I would have snapped and tried to kill her. I played this over and over, how her baby would roll away into the road, how I would never forgive myself, how she had a child with her, which was reason enough to let her go. I imagined what she might yell at Aiden, and I was wild in that imaginary moment when I retaliated. I was vicious. I saw myself unhinged.
I opened the email knowing already what it said. “Warning—health information enclosed. Are you sure you want to know our results?” I did.
I had given my permission for 23 and Me, the genetic testing company, to test my DNA for APOE4, otherwise known as the “Alzheimer’s Gene.” My grandmother died from it, slowly becoming childlike, forgetting faces, speaking without a filter. Her eyes began to glass over, a lopsided grin stole her smile. My mother has been showing the early signs, a terrifying repeat of what I saw with my grandmother. I knew before I opened it that I would have to accept the results, my destiny, if it was positive. What else is there to do?
I understand that we are living the genetic lottery we pulled at birth. We are only a random set of numbers, code, risk passed on through inheritance. We are flashing dashboards of health and wellness, and one day, our number will be up.
I opened the email and stared at the words, “Heterozygous for APOE4.” The email explained that I have six times the likelihood of getting Alzheimer’s than the average person. It went on to say that one gene (as opposed to being homozygous and having two of the same gene) is not enough to give you the disease at forty, but most likely in your sixties. I closed my eyes. I saw my grandmother and my mother and me, lined up, waiting to forget.
I didn’t tell anyone for months about the gene email. Not even my husband. I couldn’t bring myself to say the words. The idea that I would die someday wasn’t what bothered me. I knew this. I know this now. All I could think about was Aiden. Who would wash his hair when I forgot he was my son? Who would tell his story for him, in all its unique glory, when I forgot my own? Who would protect him when I could no longer do that job? The girls would recover, adapt, and grow. But Aiden?
My mother struggles to pay her bills now and gets lost if she has to go farther than the grocery store. Aiden can’t read or write, so he is so much like her, in so many ways. They are meeting in that middle place of disability and dependence. They look alike, in the ways they are weakened by disability, and in the reflection of my love for them both. They both need me, and they always will. One will get worse, and one, I hope, will get better. They need me in ways that anyone who is a caregiver understands. They depend on me in that tenterhook, threatening way, where what is visceral in me meets what is visceral in you, and we just do our best to get through it.
When I am my mother’s age, sixty-four, Aiden will still be eight or nine, developmentally. He cannot afford to have me need him. That much I know.
After the lady nearly jumped me on the snowy sidewalk, I would look for her whenever I drove out of the neighborhood. I told my friends the story, and everyone asked where the hell I lived. I didn’t see her for a few months, but I lived in fear of her. I don’t know what it was I feared most. Was it that I really thought she would push her baby to the side of the road and attack me in front of my children? Did I think she would win and Aiden would see me wounded? In retrospect, I think I was afraid of what I would do to her. I was afraid her abuse of Aiden might turn me into someone I didn’t recognize.
A few months later, my three kids and I were driving into the community and we stopped to get the mail. We saw the lady, who I had taken to calling Angry Stroller Roller, walking up toward us, trademark coat on, hood down. She was bent over the baby carriage, straightening something out. When she stood and started pushing again, her Chihuahua poked its head up from the stroller, looking pleased and well cared for.
“You have got to be kidding me,” I said to my girls. Aiden was on his iPad with his headphones on and did not hear me.
“What, Momma?” they asked.
“That’s Angry Stroller Roller, that chick I told you about. And she doesn’t push a baby around. That’s a damn dog.”
The girls were cracking up and I started to laugh too, in a hysterical sort of way. I thought I knew her, because I saw her anger. And I thought she saw through me, because she saw me with Aiden. It turns out I knew nothing at all.
I was driving home last week, after helping my mother with the cable bill, when the snow started to fall. The night was beautiful, the drive peaceful, which I appreciated. She had ordered DISH TV out of the blue, for no reason, and I had to negotiate her out of the contract. I spent the hour on the phone explaining, as I impersonated her, that we were happy with our cable, and no we didn’t want DISH, and no it was just a mistake at the Charter office. My mother was happy when it was over, and I was exhausted. Not by the TV business, but by her. My beautiful mother, the one who wrote handwritten letters to aging family members, sewed my clothes, taught me to read, was changing. That intelligent woman who wrote articles for magazines while raising us kids is disappearing. I don’t know how to be her daughter anymore. I was the one who needed her for so long, through a bad marriage, through my son’s disability, through my daughter’s illness. She would bring me food when I quit eating, when my body started devouring itself from stress and sorrow. She would stroke my hair and say, “Oh sweetheart,” in a way that healed my soul. Now I tell her it’s okay when she makes mistakes. I tell her she is my best girl, and I rub her arm when she cries, which she never used to do. I don’t want to take care of her. I don’t want to have to. I don’t mind the caretaking, I do it with my son. I do it because I love, and I can. But this is my mother. It shouldn’t be like this.
As I drive, I listen to music, looking for something to heal what feels like it keeps breaking in me, my hope, my will. Like plaster, I keep mending the broken parts of my heart, but I feel the strain. I put on the album James Horner wrote for the movie Legends of the Fall, tuning into my favorite, “The Ludlows.” The song is named after the family upon which the story centers, and their joys, love, and tragedies. As the piano plays alone in the beginning, so hopeful and sweet, I see my son in my arms as a baby, then crawling on the floor, big eyes taking in the world. I see him asleep in my arms, nursing, growing, smelling like cotton. When the strings join the piano, I see the land open up in front of us, the hills, the snowflakes and the snowmen, the sisters to follow Aiden, my mother baking for them in the warm kitchen while the snow swirls outside. I am swept into a memory of what it means to love, and be loved, of what it feels to hold someone so close that you can taste their dreams.
The poor Ludlows in the movie, I think, as I hit the blinker to turn onto Somersett Parkway. They lost so much. How many small cuts can you sustain before you bleed out? I tell myself to see pain, my pain, as proof of life. That gets me through when it hurts, when I am losing ground. When I hurt like this, when I lose like this, like I am losing my mother, like Aiden will lose me, shouldn’t I rejoice that I lived at all? The crescendo of the song soars, and I promise myself that I will keep fighting for all this life, no matter what. I will sing the song of my breath and my imperfect DNA and that of my son’s, of my love and my hope, for Aiden, for my mother, for my girls. This song is what life sounds like to me, what it feels like, when I am lost for words, when I am afraid I will forget. I may forget the melody, of this song, of this life, when that APOE4 comes to claim me, if another death doesn’t come first, but I won’t forget the meaning.
I will start preparing Aiden for all this when he gets a little older. I will start telling him, when I get closer to sixty, that if Mama doesn’t recognize him, it doesn’t mean she doesn’t love him. It could never mean that. It’s genetics, I will tell him, in the most simple terms. But story can master destiny if we try hard enough. If we remember to say “I love you” more than we forget the details, more than we fear the truth. I will tell him it will be okay, even though my own anxiety makes me question the veracity of this statement. I promise it will be okay, Aiden. And even if I don’t recognize you, son, I will always know you.
Cyndy Cendagorta is working on a collection of short stories about broken things, including bodies, children, faith, and love. She holds a Master of Arts in Political Science from Washington State University and is a special needs mother and advocate. Her work can be found in Cagibi and the Salmon Creek Journal. She lives in Reno, NV, with her husband and three children.
Header image by Kelly Sikkema via Unsplash