By L.J. Goes
A crowded hotel. An airport? It’s impossible to tell because the hustle and bustle, the mood of the place--it’s exactly the same. Transient. Interesting. Modern and clean.
I look down at myself and discover I’m clad in a suit! Vintage Chanel (please oh please)? Maybe Anne Klein. Not sure. It’s been so long. Realizing the clout my suit carries provokes me to stand tall as if I am about to shake the hand of a new business acquaintance. Pain shoots through my leg as I correct my posture...damn stilettos! What?! Are those my old school Ferragamos? I cannot believe I crammed my mom feet into these babies!
This is not my cooking all morning-going-to-therapy-to-IEP meeting-to-doctor’s appointment-to labs-to-the-post office to mail labs-to the grocery store-and do car pool outfit.
Why am I rushing? I should be savoring this. Order. There is order here. Things make sense. People going places with a purpose. God, I remember how good it feels to get results. Go somewhere, do something and be done with it. Execution of plans. Meeting deadlines. Achieving goals.
Why am I here?
“Your post on Facebook really pissed off my wife!” The man keeping pace beside me (no easy task because I am practically running) barks vehemently into my face. Instinctively I know he is a doctor.
Confusion sets in but does not prevent me from launching into justify mode.
Always…since this journey began. Justifying.
“I’m sorry.” I say, as I have grown accustomed to saying over the past few years. As if I genuinely, sincerely mean it. I do not. It would be more honest to say "I'm sorry if legitimate research and scientific data offend you." Educate, don't alienate, LJ. Discipline your tongue. “I only use facebook as a platform to discuss what happened to my son. I talk about iatrogenic autism and epigenetic illness. I am sorry if I offended her. It’s just that, what’s happening to our kids is an emergency and no one in power is doing anything about it. What’s worse is, they know. Tell her I speak and write as I do because I need people to pay attention to our kids.”
The doctor stops moving and people fold in between us. I feel like I should stop too. He has "the look" my friends and I have grown to associate with the deflowering of a virgin. It clicked. Yet, instead of stopping I keep moving at the same ferocious pace. It occurs to me that I am going to speak somewhere and what I have to tell the people who will hear me is very important. Yes...everyone will be there. My friends, The Thinking Moms, AIM, every single autism nonprofit in existence, all the veteran activists, journalists, authors, doctors, celebrities, researchers, whistle-blowers, philanthropists I've come to know and follow over the years. We are all finally converging to tell our stories. The moms and dads coming up behind us, the smart ones, the young ones who listened...they made this all possible. It's a special day, indeed.
“NOAH! Wait for mom!” I hear myself yell.
Wait...hold on...WHAT?!?!?! Noah is here?
My son looks back at me as he runs as fast as he can and screams the scream I have heard 20,000 times. “NOOOO! Help! Nooooooo! No! STOP Want fountains!"
His presence in this scenario devours my joyful anticipation.
He screams as he darts in and out of view, now 5 or 6 people ahead of me. “No! FOUNTAINS! Earn stars for FOUNTAINS!” He screams as he bounces off the crotches of business people in smart suits that are now stained with the errant sunflower butter from the corners of his mouth and palms of his hands.
If I want this to end I have to find a fountain. I am shaking uncontrollably. My mind is racing. The familiar panic, formerly a feared enemy, is now more like an annoying friend. As much as I despise the way it feels, I actually need the adrenaline to get through this.
Why would I bring him here? Where is my plan? I had to have a plan...there's no way after all these years I could be this stupid.
“Noah. Noah. Listen to mama. Okay? I have to go talk to these people. Our friends are going to be there. All the kids you know. Alexander, Ian Vince, Harry, Nick, Carson. All the people on our wall. They are going to be there, remember? We are going to tell the people what happened to you. Now we have a long way to walk. You can earn stars for fountains on the walk."
He grabs the sunglasses I have propped on my head and whips them into the crowd. I do not take my eyes off him because I know he will be gone in a split second. I hold him by the ankle while he scratches my face and pulls out clumps of my hair. He kicks me in the chest and face.
All the clean, smart-suit wearing people pretend not to see us.
I used to make money. I used to matter. I used to be sexy. I used to participate in life on this level. I used to have money, sex, free time, peace of mind, friends, down time, hobbies, naps, parties, play dates, book groups and vacations.
Fill in the blank. I used to have it.
He slaps me hard in the face and takes off running into a gift shop.
My stilettos fit easily into the crux of my arm pit as I take off in a full sprint after him. Blood runs down my throat and flows from my nostril. The shop is close and small. It will contain him. I just need to catch up.
Always, just trying to catch...up.
“Epigenetic illness!? You talk about autism on Facebook?” I hear the doctor shout after me.
What is it with society’s inability to recognize a real emergency when it is happening before their eyes?
“Yes! That's what I said!" I yell back.
Within a split second he's by my side once again grabbing my shoulders and pulling me toward him. “What do you mean iatrogenic?”
“I mean my son got sicker and sicker after each “well baby” visit until he was eventually given a psychiatric diagnosis of autism. He doesn’t have autism…that’s just a word that describes behavior. He has vaccine induced brain damage, autistic enteritis and auto-immune illness. It’s happening to children every day in this country. We are taking our babies to people like you to keep them well and you are making them sick! The media won’t report on it because Kathleen Sebelius, the lawyer who runs the DHHS instructed them not to. She knows nothing about medicine, has no medical credentials. Ask yourself why she runs the DHHS!"
I wriggle free just in time to catch a glimpse of Noah’s curls darting behind a book shelf. The shopkeeper regards him.
Gawd, another unsupervised brat…I hear her think as she pops her gum.
He paces in front of her, his terror of the unknown, apparent. Good. He's scared. Maybe this time he will understand consequences. Maybe this time he will understand what he is doing. Please, please God, let him understand. I cannot live like this much longer.
The blood accumulates in the back of my throat and I'm forced to seek a tissue. Inside the gussets of my Louis Vuitton briefcase I find Noah's accouterments: diapers, wipes, applesauce (loaded with medication), a bottle, an Ipad. Nothing for me. Nothing.
Then, a man's wailing.
The doctor has gone fetal in front of the gift shop, sobbing uncontrollably. His guttural sounds invoke mental images of rape.
Still...no one stops. No one sees him.
"Are you okay?" I ask as I try to get a good look in his eyes.
"I gave my daughter her 12 months shots and two days later she was dead. SIDS. I gave them to her. I should know. I'm a doctor. I'm a doctor!" White foam accumulates on the side of his mouth. Every orifice on his face is oozing salty water and mucus.
"Listen to me!" I hear myself shout as I am now the one holding him by the shoulders trying to snap him back to the present. "You had no idea. There is no way you could have known. You were uneducated like the rest of us. We did what we were told. We all believed. I bet you did not even know VAERS existed? How could you know when your employer told you there was nothing TO KNOW? I am so sorry for your loss. Please forgive yourself. Please." My own familiar tears splash upon my lapel. I am covered in blood and shoe prints. Nothing is ever as it seems. Ever...ever...ever. The wife knew. A mother knows. He kept resisting her pleas, doing what he has been trained to do. Following the rules of science. Only, he didn't know it was the dictates of political science instead of medical science. He's trained only in dogma with little hints of logic and science thrown in to make it appear legitimate. The loss of a child compounded by the loss of belief in one's own abilities as the result of realizing all those years of training were built on a lie. This poor man.
His eyes locks with mine. "Why? Why?" He implores.
"Money. Power." I tell him. All I ever wanted was the truth and now, without concern for consequence, I dispense it.
Suddenly gratitude envelopes my character. Thank God I still have my sweet boy. I hugged the doctor like we were soldiers who'd just survived a droning and dried both our tears with a baby wipe.
"Please wait here. I have to get my son and we would be so grateful if you would come with us. We are all getting together today and we are telling the world what is happening to our babies. Please come with us. I guarantee there will be others there who have the exact same story. You will be comforted. Please think about it."
I left him staring into space, nodding, and went to collect Noah.
"Little boy? No. No boy here." The shopkeeper says.
"I saw him...I saw him come in and run right up to you. A little boy with a red shirt, curly hair. Big brown eyes. I watched him! I didn't take my eyes off him!"
"Lady, that kid ran out of here as fast as he ran in. He's gone."
He's gone. He's gone, lady. Gone.
I pour a strong cup of coffee as a warm wonderful sense of anticipation fills me. It's autumn in...the city? This is my kitchen apparently. My stuff is here. But, clearly, without question, we are in Chicago. It's a galley kitchen with deep emerald surfaces and cherry cabinets. Utilitarian. It's definitely not the place we had in Montrose Harbor when we first got married and it's not our house in the burbs. No finger prints on the walls. No clay on the floor. No wipes with diaper bins bordering the entrance into every room, no markers on the walls, no Lego's underfoot, poop smears on the walls...
"Mornin Babe." My husband rounds the corner, kisses my cheek like this place and the glorious pink purple sunrise pouring into the kitchen window are old news.
He grabs his own coffee (still taken black) his news source, and saddles up next to me at a large artful table where we share an incredible view of the city. "Don't you think it's weird we're here?" I say. "I thought we were going to move to a farm in Texas."
"You're a freak." He says. Making me feel safe yet entirely uncertain if this is reality or not.
"Mornin, mom, mornin dad!" Liam and Mads stumble in and grab mugs from a place where they are clearly accustomed to finding them.
They drink coffee?
My children...my God...my children. Mads is breathtaking. Her dirty blonde hair whipped up into a sloppy bed-headed bun. She looks like a beauty queen in sweat pants and a Notre Dame t-shirt. She glows. Literally, radiates love. I force myself to look away and take in my sweet Liam. His father! He is his father. My gosh! So strong and smart and still, after all these years, so kind.
"You okay mom? You look weird." He says.
I wipe the tear from my eye. "I'm so great."
"Tell me everything." I ask them, trying not to sound crazy...not wanting this moment to end, not wanting to be "that" mom who pries into everything; completely uncertain what the mother of adults is supposed to behave like.
"It was incredible. We had, the best time!" Mads pipes up, ready to spill the details.
"Do you really want to know mom?" My husband knits his eyebrows in my direction. Still so very at home in his own skin. Clearly at peace with the fact that our children are adults. Accepting of the decisions they make. The ones that he knows of, anyway.
"Yes! I really want to know!" I insist.
"It was great we met up with--oh well, good morning Noah Patrick Goesie!" Mads interrupts her story. "You feelin' okay this morning player? Noah was popular with the ladies last night ma. He busted out Dad's old centipede move!"
I cannot contain my gasp as I take in my beautiful son who is now a man. So tall, and strong, floppy curls obscure his eyes but I note that he rolls them in his sister's direction.
They went out last night. The three of them...they went out last night.
Is he...God please tell me...please tell me he is recov...
He slugs his brother in the arm hard. "What up little bro?" He says. Liam smiles at him. "Hey Ladies man...you want some eggs?" Liam gets up from the table and starts preparing breakfast. Noah nods in the affirmative.
"Morning Mom and Dad." He says as he plops beside me at the table, causing the whole thing to shake. "Man, what a gorgeous sunrise, huh?"
"It is the most gorgeous sunrise I have ever seen in my entire life, Noah." I say.
Joy fills every single cell of my body. "Mom, you are wonky this morning." He says. I touch his face and he smiles that same unbelievable smile we witnessed the day we realized we were going to get him out. April 23, 2013 at 3:12 p.m. That exact. same. smile.
I need him to look me in the eye to know for sure, though. He does, without a struggle. He is free. Completely free. Not of idiosyncrasies. Preferences. Eccentricities. Free of pain. His eyes tell me he loves himself. He loves his life. He loves us. He is well.
My husband who witnessed the whole thing, waits for me to recognize. "We got him back didn't we? We got him back!"
"We did Babe. We did."
This post is my official temporary written withdrawal from the autism activism community. I have come to realize with the very real manifestations of these two dreams that I am at a crossroads in my life. A choice must be made. With all that I am I want dream number two. Yet, this is not evident in my choice of daily activities. I rise each morning, affirming my purpose. But then, I get an email from Anne Dachel and of course, I have to read it. Then Age of Autism. Gotta trot on over to Jenny at AutismWars and Heidi at Gaia Health and see what they are making happen. Then over to vac and vaxtruth. The day it aired on ABC, I stimmed off Kim Spencer's interview about The TMR book and her son's recovery for hours. Then, I head over to my own private messages and find several inquiries await. People wanting studies, needing answers. When I am honest with myself, this is what I want to do. I want to talk to people all day long about how to get help and how to stop what is happening. I want to hook them up with other people who can help them. I want to prevent what happened to my son from happening to others. That is how I want to spend all my days on earth until justice is served. Before you know it though, the day is gone. The lure of facebook is far too enchanting when faced with the daunting task of considering the biochemical implications of EVERY BITE OF FOOD that enters my child's body. I hate biochemistry! I hate cooking. But it's what has to be done to heal this child in the present. Right now, not a big fan of the present.
After returning from a recent trip to see Dr. Krigsman for his bowel disease, Noah grabbed my computer, threw it at the wall, smashing it to bits. He is only 6. A wise person who I love very much, arrived on the scene an hour after it happened. I was quite literally beside myself with anger, sobbing, storming around my house full of dishes, dirty laundry, clay, toys and filth. "This was all I had! My only link to sanity!" Noah was right there standing next to her, as I tossed the hunk of plastic and metal formerly known as my acer into a box.
Kindly, she said. "No. You have Noah. And I think he did this because he is trying to tell you something." Yes, I hated her in that moment. Didn't make her wrong, though.
Like many of the Thinking Moms, I have spent hours of my son's childhood on my computer, on conference calls and at meetings helping other parents find answers for their children. Many of those children are recovered. It's Noah's turn.
As hokey as it may sound, I love you all. This community, everyone in it...you all saved my life. You are changing the course of history for all our children by fighting this fight. Thank you for setting the highest example, accepting me into your lives and helping me find answers. I hope when I return I am worthy of your partnership!
Much love and admiration, LJ Goes (the Rev)