mothering

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To the person who asked me what it feels like to mother a child with a developmental disability

Thursday, June 24th, 2010

My son races down the block. He holds on to the dog’s leash, laughing. Two young girls stand on their porch clutching towels against matching bathing suits. They are young and undeveloped, thin legs and freckles. They remind me of summer, lemonade stands, and kick the can. My childhood.

J stops on the sidewalk in front of their house. His small feet smack on the number three of their crudely drawn hopscotch board. He tilts his head to look at these girls. He smiles.

“Do you guys have a brother? Cause if you don’t, you should get one?

J makes this proclamation, but does not wait to hear the girls’ reply. He runs again. One arm straight as an airplane’s wing, the other loose at his side. He holds tight to the dog’s leash. He looks like a crooked pattern of flight. His body a perpetual right angle.

It is both a joy and a heartbreak to watch my son running, to hear him call out to neighborhood girls. My boy is so stunning. Simple acts fill me with reverence.

When we turn the corner, I look back at those girls. They stand together on the curb, laughing like the curls of their pigtails. They are innocent and beautiful. I can not help but hope that one day they will write my son’s name inside of a heart in the back of their notebooks in permanent ink.

Red Lights Remind Me

Tuesday, March 9th, 2010

I am not the type of woman who wallows in rainy days and sad songs played on repeat. I believe in action. I do research. I make lists. I do not believe that sadness is impenetrable, until suddenly it is.

Red lights stop me. I am reminded. I see my son. He sits awash in sunlight in the backseat of our car. He wears a Burger King crown and a crooked smile. He is so beautiful. The love I have for him is physical. It is like being kicked repeatedly in the chest. Love like the crushing of my ribcage. I struggle to breathe.

I bargain with the universe. Does every family need to endure a set quota of heartbreak? What is ours?

Doctor’s visits and diagnosis. I want to scream.

Take me. Take my legs. Amputate my hands. Rob me of my eye sight. Disfigure me. Make it impossible for me to piss without a bag attached to my hip. Fill my body with cancer. At the next intersection, let some drunken teenager driving his mother’s Mercedes smash into my driver’s side. Slam my brain repeatedly against the blacktop. Tear me up. Break my bones. Bloody my body.

Strip me of my words. Rob me of everything but, just take your goddamn fucking hands off my beautiful boy. Leave him to his sunshine and his lopsided crown.

More about Rainbows

Monday, February 8th, 2010

When I tell people that my son has been diagnosed on the Autistic spectrum, they look at me with pity. They say, I’m so sorry, with the sadness we reserve for the dead. Conversations take on the tone of funeral dirges. I do not fault people. I am familiar with grief.

Will my son have a best friend, go to prom, obtain a college degree, live on his own, love his job, get married, become a dad?

I do not have these answers. Do any of us? I think that there are better questions.

Will my son laugh? Will he be happy? Does he love?

I love you, Momma. I love you like a volcano. You are beautiful, Momma. Your hair smells like love and sunshine. Sissy is my best friend. I want to be a pirate. Let’s be pirates, Momma? We will sail the angry seas. Yo, Ho! Yo, Ho! Can we go outside and play? I want to run. See how high I can jump? Let’s play tag, Momma? You’re it. I’m hiding. Come find me. Pick me up. Want to hear me sing my ABC’s? Spin me around, Momma. I’m gonna hug on you. I am going to wish on the stars for chocolate cake. I want to eat chocolate cake all the time. Eat cake with me, Momma. Let’s eat cake.

My son. He is. He does.

Hearts Recover

Thursday, February 4th, 2010

I tell my daughter stories. There once was a little girl who was born with an enormous heart. The child’s heart was a mountain. The small girl was born perfect and full of love. Still, there existed empty spaces inside the cavern of her heart. These empty spaces rattled like pennies in a tin can

As this little girl grew, so did her heart.  Experiences filled her. The more she loved, the more her heart expanded. As her heart widened, the wind whistled in the beautiful open spaces.

The small child became a woman with a heart that thundered.

My daughter listens to this story hungry for the part when the woman becomes a mother. Oh, how the heart did stretch itself then, I tell her.

The story ends with the woman wrinkled and grey. Her heart, grown as big as the universe, beat with the memory of all the woman ever loved, finally is silent.

When the story is over, my daughter who is two and lives every day like it is a poem waiting to be written, asks,

Momma. Does a heart so big ever break?

I stare at my daughter’s hands. I think about all the things her hands will reach for, touch. My daughter’s hands are both her present and her future. They are round and soft, still chubby with an infancy the rest of her body is starting to separate from. I stare at my daughter’s beautiful hands. I listen to her whistling heart. Her heart that is a mountain.

All hearts break, baby.

I want to tell my daughter what loss feels like. I want to share hospital rooms where you bleed out babies onto sterile tables, and doctors try to fill your ache with gauze. I want her to know that angry fingers force themselves into places they should never be. I want to turn on the news and rock her hard like an earthquake. I want her to starve in my arms, just so I can arm her against hunger. I want her to get lost on the safety of her small bed, so I am sure to find her. I want to protect her. I can’t.

All hearts break, baby.  I want you to remember that when a heart cracks open, the love a Momma has for her daughter never spills out.

I put my daughter’s perfect hand inside my own. We thunder.

Hearts break. Hearts recover.

Mermaids and Drunks

Sunday, January 31st, 2010

My daughter wakes up in the middle of the night. She cries for me. I find her lying cold and wet in a tangle of sheets. In the marriage of her night light and the moon, her skin is pale as halloysite. She shivers as I change her pajamas.  Shaking against my hands, my daughter is small and vulnerable. I feel tenderness like a Neruda poem.

My daughter reminds me of Fable of the Mermaid and the Drunks. Neruda writes of the mermaid who stumbles into a bar. She has no clothes. The drunks assault her. They burn her body with cigarettes and toss hate like burnt corks. The mermaid, not having language, is silent through the entire assault. She does not shed a tear because tears do not belong to her. After the drunks have finished with her, she exits out the same door she entered. She climbs into the ocean and swims away. Neruda says she is clean as white stone. She swims towards emptiness, towards death. 

I find comfort in Neruda’s poetry. We are all swimming towards death. Even my daughter with new skin, moonlight perfect, unblemished, will die one day. As I put my daughter back into her bed and pull up her covers to meet her chin, I am reminded of her namesake. Last year, my Nana waved a wrinkled hand at death. She and death flirted. He rested a bony hand in hers before losing interest and relenting. I went to see my Nana in the hospital. Hooked up to monitors, she looked so small against the bed rails.  She was as beautiful as my daughter waking up in tears against some foreign night. We are all swimming towards this great empty.

When my daughter wakes up at night and calls for me to comfort her, I swell with love. I am simply overcome with it. I think about Neruda, mermaids, and drunks. Most times, I am comforted. Then, there are times when I get angry. My daughter so small, all of us so vulnerable, the arrogance of corks and cigarettes. At those times, I rage.  I dream of fire. But, even clothed in words, with the burden of my emotions, I am certain the river will wash me clean.

Parenting books cause panic attacks

Wednesday, December 23rd, 2009

I’ve been reading books about raising children with low impulse control. These books are written by important sounding people with advanced degrees attached to their names. They all say the same thing. Nothing is as crucial as supporting your child’s self-esteem. Self-Esteem is written in bold print, italics, dotted with a million gold stars. You can read the cautionary foot-notes which forewarn of what will happen to your children if you do not bolster their fragile sense of self at every turn. Drug abuse, alcoholism, gambling debts, burglary, prostitution. Your son or daughter will end up living in a cardboard box, somewhere, with nothing but a hungry pack of alley cats to keep him or her company. These “how-to” books write it all out like parenting is an equation. X equals the amount of hugs a child gets divided by the time that mommy spent blogging. Between the pages of these books, I do not add up.

Still, I think about these books while I struggle to get my son to calm down and he keeps spitting repeatedly in my face. Keep your voice calm. Set practical limits. These guidelines I try to remember while I take a boot to the chin, or when J’s angry legs and arms fly like whirligigs across the kitchen.

I do not always stay calm. Sometimes I scream. Sometimes I keep screaming. Sometimes I can not stop, even after my voice has gone quiet. I continue shouting in my head. Enough! Enough! Enough! The books do not recommend this as an effective parenting strategy. 


By the end of some nights, I am exhausted. Still, I tuck J into the bed in his new room. He tangles his fingers into my hair. I bury the tip of my nose into his neck. I breathe in.

Me: Are you excited for Christmas, little man?

J: I don’t think Santa is gonna bring me anything for Christmas, Momma?

Me: Of course he is, baby. What makes you think he won’t?

J: I’m a bad kid.

****

Yesterday I had a panic attack. I was driving home from work and my gaslight came on. This happened numerous times before. I am not always good with the details. I lose my cell phone and my keys on a weekly basis. I forget to feed the cat. My children go too long between haircuts. Luckily, I had my wallet. I had enough fuel to exit the highway and find a gas station. I HAD plenty of gas. Stuck, the first car at a light in front of a long line of rush hour traffic. I convinced myself that my car was going to stall. My heart raced. My chest got tight. By the time the light turned green and my car lurched forward, I was hyperventilating. For about a mile long stretch of road, I struggled to maintain the wheel and my composure. My heart slammed against my ribcage like a death match. I pulled into the gas station and handed the attendant my credit card with shaking hands. I rolled up the window while he fueled my tank. I sobbed uncontrollably.

I am fucking this whole parenting thing up? What if J grows up to hate himself? It will all be my fault.

I call my husband. I need someone to talk me down.

You are not fucking things up. You are a good Mom, Kel. Besides, name one person you know who grew up without self-esteem issues.

What my husband says makes me pause. I can’t think of even one person. Not sure what that says about the company I keep, but, somehow the fact that every single person I know has struggled to define him or herself, to feel good about him or herself, to be whole, is comforting.

I get angry sometimes that things can be so hard for J and by extension for me. I never wanted to be the mother who had to meet with the director of special education to have her son tested for behavioral issues, but I am. I never wanted to have a son that can be so difficult to parent that some nights after he has kicked and screamed for so long I am certain my own resolve will break just like the toys he has thrown across the room in rage. Many nights I go and simply collapse on my own bed after my boy falls asleep in his. But, this is who I am. This is who we are together. J and Me.

I love you Momma. I love you a million, a million, a million…..TEN!

J hugs me and his soft blue pajamas brush up against my arms and cheeks. We call these pajamas his Whammer Jammers. They have scattered robots of all sizes and shapes racing up and down his legs. J’s pajamas remind me of when he was just a year old. I used to pretend to be a robot. I even used a robot voice. Nine months pregnant with M, I would chase J around the living room with my arms outstretched while he ran like a Sunday drunk on his wobbly legs to allude me. He ran as fast as his small body would propel him, trying but not really wanting to escape. Each time I caught him, I kissed him on the cheeks. I tickled his neck. I threatened to never let him go. I meant it.

I love you too, J. I love you a million times…. forever.

Please let that be enough.

La Luna

Friday, December 18th, 2009

When the moon sails out the water hides the earth’s surface, the heart feels like an island in the infinite silence*

We should have sent a poet to the moon, someone who would have written her a sonnet instead of attempting to conquer her with a flag. I am not a possession but I give myself to those who dream.

My son would like to be the man who fixes the moon. He believes there is a magician whose task is to find the moon’s missing half. He is hungry for this job. He does not understand that the moon never truly changes shape. She is simply a trick of light and shadow. My son believes what his heart tells him.

Half of the moon goes missing sometimes. She must crack and fall from the sky to plunge into a waiting sea. My son wants to use his own two hands to find her. Each night at bedtime, we build a small wooden boat and J sets sail across a pitch of black sky, a parallel of water. We surmise the moon will be both slippery and warm when J pulls her salty from the ocean. J asks me to make him a special lunar pouch that he can use to carry the moon. Even though I can not sew, I nod my head emphatically. Yes. For my boy, I will. For this love, I sew and mend things. I dream myself domestic because we can eat oranges under a moon that is full.*

*Frederico Garcia Lorca

Places

Sunday, December 13th, 2009

New houses are seductive. A fresh coat of paint splashed on the walls, colonial crown molding. Every time I walk into a Home Depot, I am thrilled with the potential for re-invention. I have never owned a home before, was always at the whim of a stranger’s aesthetic. In past rentals, I covered old-fashioned wall paper and fake wood panels with Matisse museum knock-offs, old album covers, and Moroccan-styled tapestries. I marked each temporary territory as mine. I struggled to define each room’s identity.

In the first place I lived outside of a dorm room or my parents, I shared this fire-trap rental in a college town with my husband who was just my boyfriend at the time. We used milk crates as tables, and pushed together two twin beds we slept on horizontally. Our apartment was the second floor of a house that was otherwise abandoned. We had a big claw-foot tub but no shower, and two lizards we named Bonnie and Clyde. Having recently become vegetarians, we cooked rice and lentils and climbed out of the kitchen window each night to sit up on our rooftop drinking cheap wine straight from the bottle. Back then, we smoked under the stars. The lit tips of our cigarets punctuated our idealistic philosophy. Who we were going to be when we grew up did not matter. What mattered was that we could listen to bootleg Grateful Dead or Bob Dylan strumming acoustic. The possibilities were infinite.

Years later, we rented an apartment attached to the house of an angry landlord. My husband and I, newly married, would press our ears up to the shared wall that shook with his violence. We worried about his children. During the daylight hours when the wife left the house to collect the mail, she always wore dark sunglasses. In the sixth months we lived there, I never once had the chance to look her straight in the eyes. This is a regret I carry. That house accumulated sadness. My husband lost his job while we lived there, and I began to regret my own professional choices. Maybe, I’ll go back to school and get my MFA in creative writing. Dreaming is not the same thing as being brave. Like the inhabitants of that house, I cowered.

We lived in places that grew us like skin. The basement apartment we planned our wedding in, the two bedroom house we have lived in since five months before our daughter was born. I can trace the trajectory of my life, of all of my choices, by the shape of keys, the memory of their weight against my keychain.

There was a cottage the color of margarine that sat snug inside of woodland. From the computer desk tucked in the corner of the living room, I could look out at the bay when the trees were bare and beautiful. The air always smelled like salt from the ocean just a short ferry ride across to the barrier island. The hardwood floors were always gritty from the sand we tracked inside with our bare feet. David fed us all summer long from vegetables he grew in his garden. At night, we walked up to the movie theater in town. We watched old movies in black and white. We ate ice cream on the steps of historic buildings. We held hands. I lost three babies in the four years that we lived in that house. And yet, I still remember it as someplace that made me happy. Maybe it was because we adopted my son while we lived there. After he was born from another woman’s body, we brought him home to the screened in porch, to the pale green bassinet that we wedged next to our queen sized bed, the only furniture we could fit inside the tiny bedroom. It was in this house where my words came back to me. Some places grow themselves with only regrets, this was not one of them.

We are moving again. A home of our own is being created. There are rooms being painted like candlelight dinner, a bathroom the color of a Caribbean sea. I am hanging stars like Japanese lanterns on the bedroom ceiling for my children. I am still contemplating the perfect space to put my writing desk. I know that I will be a wife, a mother, and a writer inside this new place. I dream this is the house that I grow old in. But, as I contemplate the right type of art to hang in the living room, the perfect size area rug to cover the hardwood, I’m intrigued by the idea of identities and reinvention. I wonder just who I will become inside of these walls.

Animals and Angels

Saturday, November 21st, 2009

Kierkegaard said, “Man’s anxiety is a function of his ambiguity, and his complete powerlessness to overcome that ambiguity.”

****

When we got married, I told David I did not want to have children. Just the thought of another person demanding space inside my body made me resentful. He nodded his head as if he was in agreement. My husband, who is as sturdy as a spreadsheet of checks and balances, romanticizes the risks he took in marrying me. I knew you would come around to wanting babies. He told me this once in hindsight, as he watched me rock our firstborn soft to sleep. But, what if I hadn’t? I was outraged at his stubborn patriarchy. In that moment, my husband is a complete mystery to me.

For a long time, I did not want to be a mother, and then I did. That desire grew enormous like a tumor in my body. I ate and breathed and existed for years only to serve this biological function. Time and again, I was met with medical resistance.  I convinced myself that I was cursed. I never should have said I did not want to have babies. Who would have thought that God would listen to an atheist. That I believe my children are miracles makes me flawed and beautiful.

****

Did I ever tell you about the time I made a brazen pass at a famous poet? I did. Every time I read his words, I felt like I was burning. I convinced myself that I was looking for sex, but really it was a strange sort of validation. If he would only bend my legs above my head and make a sonnet of lust out of my body, I believed I could learn to have respect for my own words. My prose the central nervous system, I just wanted the reflex that comes from touching.  Rejection can be a satisfying thing when it forces you to come face to face with who you really are. I am not an animal or an angel. That may be the most difficult thing to reckon.

We are all this state of in-between, the mechanism of self-feeding, like magpies attracted to things that sparkle, broken mirrors we can still see our own images in.

****

My son comes into the bedroom this morning and finds me quietly crying.

J: What’s wrong, Momma?

Me: I’ve been reading a book and it made me sad.

J: Let me see. (He takes the book from my hands.) Is it all sad, Momma?

Me: No baby, not all parts are sad. Some parts are sad, and some parts are beautiful.

J: Show me, Momma. Show me the sad parts.

I read to my son from Impossible Motherhood by Irene Vilar. She writes about the birth of her daughter after choosing to have 15 abortions. She says, I don’t want you to ever succumb to the dismembered life of a false self. Your fate depends, a great deal, on me. Writing this down. I read these words to my son who can’t possibly understand them. He smiles at me.

J: Sometimes I get sad too, Momma.

Me: I know, baby. What should we do with our sadness?

J:  I think we should spit it out of our mouths.

My three-year old son is a poet, a genius, a sage, and my beautiful little boy.

Me: Why don’t you spit your sadness in my hand? Let Momma see it.

(J spits.)

Me: Oh, look at your sadness baby boy. It is heavy in my hand. What color do you think it is?

J: (Laughing) It is purple Momma, like a shadow.

Me: And green like a Monster under the bed.

J: Yes. Momma. Just like that.

Me: I think I am going to eat it up.

(I mock putting my hand to my mouth. J stays me.)

J: No, Momma. Don’t eat it. We should throw it away. We should take your sad and my sad and we should just blow them away.

Yes. This is it exactly.  Love and sex and death and hope and the constant mining of myself to write it down, to get it down, to shape this living with it, it all just waits suspended by the shape of a beautiful boy. He sits next to me on the bed. We cup our palms against our mouths. Our lips form tiny circles. We rise up our hands. We inhale deeply. Together, we gently blow

Berlin

Friday, November 20th, 2009

Who are you, really? This is such a stupid question. You are not an easy person to get to know. A woman I work with tells me this. She pantomimes a wall. She points me out like I am Berlin. The conversation feels ridiculous. I hold fast to my division.

****

I woke up at 3 am. I could not sleep. There was a message from J’s biological mom on my Facebook page. I’m so happy that J has you. She writes. Who better to raise a boy with the struggles J faces than you and Dave? I stand in the kitchen exposed in a plain white tee shirt and two mismatched socks. I ache. I both love and hate my son’s biological mother. She gave me J, and yet, I resent the genetic implications. I am terrified that my mothering, as of late, is not the poignant variety. I lean my forehead against the counter. I have no idea where this is going.

I am grieving terrible the loss of the baby in whose delivery I was made witness. I am not sure who the child is that has replaced my darling boy. The infant whose body I held to calm only moments after his birth is suddenly missing. Everyday I hold my son. I rock him through his violence. I tell him that I love him, and wait patient for my heart to catch up to my words. I write down the sting. I watch my son, now fast asleep. I do love him so fiercely it sucks the oxygen from the room. This only manifests into self-hatred. I am guilty of withholding tenderness when my son becomes all wild and dangerous limbs. I recoil from his disproportional rage.

It can be so hard to stay present. Some days I think that books, art, and music, like my writing, are the only things that I can identify with. God, that is so pretentious and melodramatic. It is also mostly true. I need this space to be stunning, even when it feels like a shotgun blast that leaves a gaping hole in my belly.

Is a breakdown really such a beautiful thing? In the movie Garden State, the main characters wear lemon yellow garbage bags and orchestrate their screams against a dark abyss. They are met with the sound of their own echo. You know what scares me most of all, that the sound of my own voice might be universally flat? I am desperate for some reverberation.

What I do not need is to be told that I am a good mother. It does not help to be comforted with platitudes stating how lucky my son is to have me. This is entirely pointless. If you really want to help me, if you really want to know what you can do, tell me about the worst days of your life. Do not spare me the terror surrounding your recovery.