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.