Tuesday, March 29, 2011


I was not kept safe as a child. My parents had their own pain and issues, and they unintentionally let really bad things happen to me. Really, really bad things. This is important to understanding what drives me as a parent, as a human being. All that I do, every breath, every waking thought, every restless dream, is about keeping my children safe. The idea of not being able to take care of them, of being forced to somehow abandon them, is the stuff of nightmares, and my reality, for my boys have painful conditions that I cannot fix. These issues raise their ugly heads and scrape against the wounds of my childhood, and I face the monster. I am Alice and I battle the the Jabberwocky. 

It is called hypervigilance, this condition of mine, and it is common to people who have been abused or traumatized.  A close friend was horribly abused by a stepparent, while other family members looked the other way. She was unprepared for the blinding white fury that enveloped her when someone even looked at her child the wrong way. The dreams, the irrational fears. I could have told her. 

You swear to yourself your child will never hurt the way you have. You swear they will be safe. You have no idea that this is just not possible, that you are taking your own inner child and giving them life and legs to walk away. Fierce love not withstanding, you are screwed.

Jude started having headaches before we left for New York. He would scream, claw at his face, bang his head. All I could do is sit in the dark and pray. I always pray. The only thing that ever got me through the Sophie's choices, the hell, watching my kids in agony, emotional and physical, was praying. Belief that God is good, no matter what. My one true thing, God has always been my one true thing.

We thought the long road trip would be good for Jude, my very best traveler. Like many autistic children he loves transportation of any kind, and loves scenery. COWS! CARS! TRUCKS! TRAINS! Jude's sense of wonder makes traveling a joy. Off we go. Christmas in New York with my sister and her family.

We stop overnight in Pennsylvania. At the breakfast buffet we eat pancakes and mingle with the locals, Don announces it is time to head upstairs, grab our stuff and go. We get to the hotel room and I ask Don where Jude is. He looks at me, blinking. The worst sentence in parenting: I thought he was with you.

Don books downstairs like lightening and I fall face down on the hotel bed. Eden climbs on my back and is patting me, saying, "It's okay, he's okay," and Sage kneels down by my face, whispering that it's okay, Jude is fine. Laughing a little at me, like his Dad does. My neurosis is cute, I guess.

Don and Jude show up, Jude flapping his excitement at the elevator ride. "He was still sitting on the couch, watching the Today show," Don reports. I go in the bathroom and run the water and take deep breaths. When I come out Don gives me a hug. He knows. 

Back home the headaches continue. They get worse, and then finally a headache comes and just moves in like an unwanted guest that just won't take the hint. We can't figure out why our beloved nuerologist won't return our calls. 

Then we see his face on the news. He has been arrested in a drugs for sex scheme. No. Freaking. Way.

ER visits. Each time they give Jude medication and oxygen, stop the vomiting, and he gets better, and we go home, and he wakes up screaming. We have no nuerologist. The other child nuerologists are booked. I am furious, with everyone, including God. Jude is the ultimate innocent. Why should he suffer? It is an enemy I cannot see, cannot fight. The light hurts him, soft sounds hurt him, and I cannot make it go away.

I tell myself that Jude has his own path with God, and that might include suffering, and I have to let go to the God I know that loves him, more than I do.

I am not God.
I am not.

The new nuerologist, who has pissed me off by suggesting that Jude is genetically retarded, and also by not being our old nuerologist, who has pissed me off by letting his personal issues interfere with my child's needs, wants to admit Jude, put him under, and do a lumbar puncture, and a MRI, and a dye scan of his brain. The thinking now is that Jude either has a venous malformation, which can be painful and deadly, or pseudotumor cerebri, which requires a shunt.

The best thing it could be is a brain tumor.

Twenty days. I had a migriane once. For a day. I thought I would go insane.
Jude has had a migraine for twenty days.

The procedure goes well, except that they cannot get a vein, and have to put an IV in his foot. I cry when they put him under, and  make every single person in the room swear they will take care of my baby. He is the size of a grown man, tall and husky, taller than me, but he is my baby. He still loves Elmo and Barney. He is innocent, and has no guile. He needs me. I force myself to walk away. 

Breathe. Walk away.

Jude is back up in his room. The tests are all normal. Which is good. Only, why the hell is he still in pain? No one knows. I go home to see Sage and Eden. Take a shower. Eat. Pray.

On the way back I watch all the other cars on their way home, people going about their normal lives, their normal expectations, that everything will be okay. I know better, I always have. It is silly for me to imagine that their lives are untouched by evil, sadness, addiction, betrayal, sorrow. I feel as if I have been singled out, to be scraped along the pavement of life until I am bare and have no illusions left, no promises, no dreams. 

John calls me, and I sit in the parking lot chatting, telling stories about inept residents who find themselves on the wrong side of my dual personality. I ask him, will I ever get used to it. Ever? 
He is quiet.

I ask him if everyone at his house is okay. No, he tells me, because his little girl still has CF. He knows he can say that to me, because he knows I wake up every morning hoping it isn't true, that my boys are okay, they are healthy, we are all okay.

Like cold water on your face, the realization that it never is. Then the day begins, trying to find a way to be okay with that. I wonder if he ever just wants to scream and kick and come undone. That makes more sense, in a way, than getting on with your day and going to work and doing the dishes. It is like a type of insanity forced upon us, John, that we have to pretend it is okay.

I don't say that, though, I tell him I miss him, and Jamie, and can we please get together soon? Even if it is hard to look at one another, because we recognize the pain behind each other's eyes? Can we drink coffee and laugh about stupid pranks and people we used to know?

Yeah, he says, to the coffee part, anyway, because that is the only part I said.

Walking across the pedway I see the anesthesiologist fellow, and he smiles and tells me Jude is doing fine, don't worry, he is fine. I am feeling a little better as I walk down the hallway leading to the children's unit. A security guard walks in front of me, and holds the door for me. He is joined by two other security guards, and they are walking with a sense of purpose, heading down the hall.

Don't turn right, I say. Please. Don't turn right.

They turn right, right into Jude's room. Only then do I hear the screaming, and notice the broken chairs in the hallway. No.

I walk in to his room and see Don holding him down while restraints are strapped on him. I begin screaming that no one who is not a doctor is allowed to touch my son, and something about God punishing whoever does, and Don and I are hustled out of the room.

Don collapses on the floor, sobbing. 

Apparently Jude has had a psychotic reaction to the anesthesia. He is to be transferred to the psych unit. He is in restraints, chemical and physical. He can't be untied until he calms down. Only, doctor, please, he can't calm down until you untie him.
I am a lawyer's daughter, I am. I can talk a snake out of its skin. I can convince anyone of anything, and I am relentless. One arm? Can you free one arm? Jude is okay with one arm, and then we release two. The haldol is working. One foot? The resident, who is young, and cocky, but tired, and frightened, sighs, and says okay. 

Jude sleeps.

I know what they are doing. They are going to transfer him to the psych floor. We cannot be with him on the psych floor. We hate the psych floor. You don't understand, I tell them. He will think he is being punished. I can't leave him. I can't do it. He needs me. He is sick, he needs his mama. Please. 

I go and stand outside. It is snowing. 


Victor comes. He is not your typical looking pastor. Long grey hair, windbreaker, sneakers. I cling to him, as if he can keep me from drowning. It is all I have, I tell him. All I have is my belief that God is good, and there is some sort of plan, That is my sanity, that is it. If I lose that, I am gone. 

I can't pray, I tell him. It is like a dirty secret. I always pray. I can't pray, so you all have to pray for me. Believe it for me. No mustard seed, no nothing. Gone. 

He reminds me of the men who lowered their friend through the roof to see Jesus so he could be healed. 
He couldn't do it himself, his friends had faith for him.

I sob. I cry so hard it hurts. God it hurts.

We have to wait for a bed downstairs. I can't sign the papers. Don has to. I can't do it. One of the nurses will stay with us for the night. He asked if he could be with us. He took care of Eden in ICU once. but I don't remember him. He remembers us. He is a Christian, his dad is a pastor. He is lovely, and he and Don talk about God while I stare at Jude. He is like an angel, this man, standing vigil. I keep thinking he might by shining, but that is the light from the hallway. Jude sleeps. He just sleeps, and I stand watch, and the angel God sent watches over me, even though I can't pray. God knows I am only dust, He knows I am only me.

I am watching Duran Duran videos. That is all I do. I do not read, I do not write, I do not pray. I watch John Taylor on a beach. Simon Le Bon on a yacht. As far away from this cold grey hospital room as I can possibly be.

My sister was a fan. I listened to tough girl music, Ramones, The Runaways. Music to beat up cheerleaders by. I secretly lusted after the bass player, though. She had pictures of them everywhere. Tall skinny bass player. Sage sees a picture of him on my desktop. He laughs, pointing out that Dad is a tall, skinny bass player. 

I start following John Taylor on twitter. He, like myself, is long into recovery, but the similarities of our lives end there. He is a famous musician, jet setting around the world, and he does not have to call his friends to ask them to do his dishes and bring a change of socks to the hospital. 

The fans who tweet him are about my age, and they live for tweets. They argue and fuss over him, what is his favorite color, how is his little dog, is his cold better, which car is he driving? He posts pictures of his little dog, of the traffic in London, of his breakfast, of Simon Le Bon. I am riveted. Some of the ladies have autistic children, they tweet me, I am not interested. I want to lose myself in the inanity of their obsession. I know they have lives they have to go back to, that don't involve a sexy British guy with a mansion, but I would like to stay on the surface for now.

Her name is Rio....

I tweet him, and ask him how he stays sober, does he still go to meetings? He answers me immediatly. One word appears in my inbox.

I tweet him back....hey, I am really struggling, my child is ill I want to go get high right now, right this minute, I just want to drink like four screwdrivers right in a row but I have been clean pretty much for years but I just can't do this...

I realize that I can't email him back, because he doesn't follow me on twitter. I don't want to post my message, either.

What am I thinking, anyway? He is just a guy with a mansion and his own sorrows and pain and things he wishes he could forget. Only he is John Taylor, so he has to find another way to pretend it isn't real.

It is time. We go with Jude down to the fourth floor, and surrender our phones, and our keys, and our child. He is sleeping when I leave, and I put my headphones on, and listen to Duran Duran the entire way home.

Sunday, March 27, 2011

Just Keep Swimming, or Dust Part 2

I don't know how to be okay. Heather tells me about mindfulness, which is, I guess, a way of keeping yourself from completely freaking out. If I am making a cup of tea, I am making a cup of tea. If I am putting on my shoes, I am really focusing on my shoes. Nothing else.

I try not to look at the lake, the waters are dark and they scare me. The drive to the hospital to see Jude is cold, and silent. Duran Duran's Come Undone plays on repeat on my ipod. Don doesn't seem to mind this new obsession. When Eden was bad I watched Korean pop music videos night and day. He has given up trying to understand.

Warm beaches. fashionable people. No one is sick. I live in Chicago, I have dreadlocks, and I have not shaved my legs for two decades. Duran Duran is about as incongruent as it gets. I love it, John Taylor is perfect. I devour every article, every interview. He is intelligent and thoughtful, talking about art and music and recovery. "Absolutely," I say to myself. John Taylor does not live in a commune. He does not stand in line for dinner, he does not dig through donation food or argue about whose turn it is to vacuum the hallway. He does not have to start IV's on his children or worry about blood born illness. He drives a Range Rover. A green one.

We are there. Jude is happy to see us, but wants to go home. He asks us, again and again, and begins to get agitated, and we have to go. They have to put him in the 'quiet room', and they have give him Haldol, and they tell me that he now has a heart condition, from the medicines they have been giving him.

This is hell. We are in hell. There are no beaches, no yachts in hell. I am in hell.

God is not good if Jude has to suffer. Give it to someone else, God, like some guy who says you hate queers or a child molester. Me, give it to me.

Prayers go unanswered and I throw up in the parking lot. I listen to Duran Duran and I speak to no one.

The next day Jude is better. Just a little better. I crawl into bed with him and we fall asleep for hours, wrapped up in one another, and Don sits by us. It is like when he was a baby, and I held him while he slept, milk drunk and loved, not a care in the world.

We are going home. Home. He can come home with us. We hurry to the car in case they change their minds.

He is screaming. Furniture flies, glass is breaking. The meds are not working. We cannot control him. I do not want to go back. God help us, we cannot go back. It has been suggested that we may have to put Jude in residential care. He is eleven. GOD, HE IS ELEVEN!

I have worked with Jude. Too many hours of therapy, blood, sweat, tears, flashcards to count. I was always told he was making progress, that he would someday be able to live on his own, have a life. Now puberty has hit, bringing seizures, migraines, and rage. I should have seen this coming, they seem to imply. This could be the new normal.

My friends, the people I live with, they don't want to say it. I know they are scared by the meltdowns, by the screaming, by my bruises. They would never say it, but Katherine does. She cries as she holds my hand. "We may not make it. He may not be able to be safe here." She is right. If I have to put Jude in a group home, I will die. It is that simple. I will die.

We go to play therapy, where Jude comes undone, because Wendy and Don are pushing him. I hate them both, and I go to the parking lot, and when I come back in, Jude is punching himself in the head and Wendy is about to call 911. I speak to him soothingly, and promise him soda, and Don takes him to the car. I sit on the floor of the center's waiting room. Wendy asks me to come in the office. I shake my head no. I refuse to move. She asks me if I am okay, No, I tell her, I will never be okay. Never again.
God is cruel, I tell her.

The very thing that has saved me from drug addiction, despair, and given me life and breath is now untrue. It will never be okay. Never again.

Wendy will not let me go home until her I promise I am safe.
I go home and look online for residential care services for autistic children.

The next day we are back in the ER, because Jude is having yet another uncontrollable meltdown. The pysch resident is talking to us, and Jude steps over to him, and pats his red hair, and says, "You have a pretty head, like Eden's."

I burst into tears, and beg him, oh, God, please help us. Please, let me take my baby home. This can't be it, this can't be true.

He looks at me, and I realize he is just a kid, like all residents, and he calls his attending, and they adjust Jude's meds, one more time. Just one more try.

It works. We go one day with no screaming. Two. A week. I breath. Jude smiles. He laughs. We are careful with him, we don't try to send him to school or make him button his own pants, but we start to see him smile, and his speech improves, and oh, my, god. The drugs are working.

Jude is watching Finding Nemo for the fourth time today. I am Marlin, anxious and controlling. Don is Dory, cheerful and forgetful. I watch it with Jude, while I check to see what sexy British bass players and their fans are up to. Jude is sorting out his stuff, using Finding Nemo as a template. I am avoiding my stuff,  because it is a bit too raw, and I know what is on the horizon. This is but a respite, and there is bleeding, screaming, letting go to do. I am asking that my friends believe for me. I am trying to be mindful, and I am asking for a little grace, a little mercy, please God, because after all, I am yours, but I am only dust.

Tuesday, March 15, 2011

On Addiction

I don't talk about it much. I was so young, it was so long ago. It is an undeniable truth, though. I was an addict. I still am.

I grew up around it, everyone drank. It meant family to me, the smell of whiskey on my father's breath, the smell of beer when my cousin tossed me in the air. Irish drinking songs, The Downtown Club with my father. I loved the way it tasted, the way it smelled, the sound of ice in the glasses. Laughter downstairs when I had gone to bed.

After awhile it wasn't all fun, though. My father was angry much the time, and my cousin scared me when he was drunk. Waiting outside in the car when my father was in the bar. Somehow no one cared what I wanted or needed unless they were drunk, and then I was pretty and sweet and special.

My first boyfriend got me high. It was the most beautiful feeling, ever. I was thirteen and he was older, blond, and beautiful, and cared what I had to say. He gave me pills, we smoked dope, I drank vodka from a 7-Up bottle, hid little airplane bottles in my backpack. When I was fourteen, I needed to drink in the morning or my hands shook. My parents were horrified at my relationships, my behavior, my grades. I wondered how they could say I was ruining my life. They were miserable, and drank more than I did. My boyfriend got kicked out of our boarding school and he was gone. I was all alone.

One night I lined up all the pills I could find in my father's medicine cabinet. Darvon, Tylenol 3, Valium.
I swallowed all of them with gin.

Apparently I called my girlfriend to tell her what I had done. I have no memory of that. She called my mother. I threw up on the way to the hospital. My mother screamed at me for messing up her new car.

So long ago. I have everything I ever wanted now. A husband, a family, a church, a purpose. I am not the girl in the denim jacket hitch hiking, getting as far out of town as I could until the cops brought me back, over and over again. I have been clean since 1989, and only once did I drink or get high from 1986 until then. I begged God to help me, and He did. From that day, it was never the same.

Sometimes it whispers my name. After my third child was born the drugs they gave me felt so good I thought about them every day for a year. I ate myself into a stupor trying to pretend my kids weren't sick.  When I don't eat, when I am sober. I feel things. Sometimes that is a bitch. The pain of not being able to help my son when he is screaming, confused, and the pain of almost losing him, and no way to numb it, that has almost undone me this year. I stood on the beach, looking at the water, wondering how much longer I could hang on, how much more I could take.

When Jude was in the hospital last week I told my friend I wanted to get high. She has walked this herself, and looked me in the eye, and said, "Of course you do."

The comfort of being known. The gift of feeling pain. The mercy to never, ever have to go back. I can take those things and be okay today. Just one more day. I can do that, and start again tomorrow morning. Because I might be broken, but I am not alone, and I have been found, and I am known. That is enough for me, and I can feel it, all mixed in with pain and sorrow and things I wish I could forget. I don't have to be strong, I just have to be still, and know what is true.

Forget brave. Just show up and be loved.
That I can manage, just for today.