* Dream One
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 carpool 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 crook of my armpit 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 enterocolitis and autoimmune 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 me. 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.
*Dream Two
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 fingerprints 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 Legos 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 and threw it at the wall, smashing it to bits. He is only 6. A wise person whom 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)
For more blogs from the Rev, please click here.
I just found this website. “Two Dreams” was the first thing I read. It’s so poignant. I feel like I have found home. I am here where there are a community of women who are living the first dream with me.
Thank you for the beautiful words, LJ. Thank God for you all. Thinkers, not just listeners. Yes, we need medical advice, but we need to be actively be ON THE TEAM, leading the way for our children. Take that medical advice and mull it over with all the rest of the information out there and BE the decision makers. WE know our children best.
“We got him back, didn’t we? We got him back!”
“We did Babe. We did.”
love you, Lisa Marie Magdalene Joyce Goes.
Blessings and prayers for you and your family….
thank you for all you have done!
I get it. I so get it. Look, it is impossible to predict what the future holds. And it is difficult to make important decisions that determine that future. U want to make everybody happy. And u want to do whats best for your family. I know this was hard for u to do but IMHO, I truly believe u made the right decision. Why? BC it is what your gut is telling u to do. Deep w/in your conscience & so obviously clear thru your interpretations of your own vivid dreams, your mom intuition is leading u down this new path. And if there’s one thing us thinking moms know we can be absolutely certain of is that our intuition is spot on. BC one thing we learned as a result of what happened to our kids, it’s when we let that intuition be our guide, we can do no wrong! Go heal Noah and when you’re ready to come back to share his incredible recovery story, we’ll be here, ready to listen!!!
When we live by the “anointed time”, not “the appointed times” the Divine will not only clear your path but fill it with signs. This is your anointed time. Thank you so much for all you have done! I’m sure all of us you helped can pick up the slack and share what we know along our journeys. I for one, will see you on the other side my sister with arms wide open for the woman who helped recover my son! ♥
Wow. I wish you luck and peace on this, your most important journey. Noah is in good hands. As are you.
Your “Dreams” are the same for all of us. You are so skilled at articulating them. Thank you for everything. The difference for my son now at age 9 from where is was at 5 is what I wish for you. Dig in and hold on. I NEVER thought I would hear my son say “I LOVE YOU” and it took until age 9 but he says it, he really says it and it’s not a dream. I pray for recovery for Noah and peace for you and your husband. It’s all that matters. Shannon
Good bye Lisa. You were one of the best activists on our team & when Noah is recovered I believe you both will be back. My grandchildren, too, will be better. Our babies will be the generation that makes the changes we are ushering in. Great dreams which say a lot. Your second will come true because you will make it happen. You woke many as your first dream represents. You did your part & your new direction is clear. Thank you on behalf of all the children your work saved. The seeds you planted will save many more & together all the seeds we planted will grow as they spread like a good virus. <3 Much love.
I cant even begin to tell you the link to sanity your words have meant for me. Mahalo for spreading your truth & sharing your gift of saying how so many of us feel. Viva la revolution will keep going ~ but we cant burn out before our baby is healed. Following the path to dream #2 is our only choice. I have so much love & respect for you, yours and all you’ve done. Kudos & carry on super mama. Drop us a note on the rare occasion? *:-)
You will be missed dearly, but know that we all understand!!!! This is a tough and sometimes daily struggle for us all, but it comes full circle. I remember years ago wondering how parents had time to advocate, blog, write, shower (lol!)…and now I know. Now parents say that to me, and my response is, “You just concentrate on your child because that is where you need to be, and it will come full circle”. And it does. Now it is my turn to do for others what they did for me and my child, when I couldn’t. And that is ALL of us.
Bless you, Noah and the family and may you all find sooooo many answers and sooooo much healing and joy!! And don’t worry because while you are gone, the other Moms have your back. And whenever you come back, you will have theirs. Full Circle. Much love and thanks!
Love to you and your amazing family. Your baby’s come first, as they should. Always.
Know that there are many people, thinking of and praying for your little man, every day. Will see you on the other side! <3
The eternal struggle… to heal the child or to stop the epidemic. We have all been there, and no matter the choice, we regret that we could not pour our full energy into both.
But the truth of this community… this actual community… is that what we do as activists is a relay race. Your activism was an answered prayer for me, because it took over some of the responsibilities for this community that I had put on myself. And during your break more voices will rise up.
And you will be back. Noah will get better, new battles will come up, and you will have new strength and freedom to take them on.
And you will not lose him.
We are winning. It is a long, slow fight, but we are winning.
God Bless the Goes family. I love you guys so much.
Ginger- You are right. I feel the same way about Lisa. She empowered me to raise my voice, and I am going to work on activism while she takes a break to heal Noah. I am working small within my community and natural parent group now, but I have been reaching out and am planning bigger things. Lisa filled me with passion and purpose. I love Lisa and my “Let’s Talk” autism moms group, which is our version of TMR.
Lisa, You are an incredible advocate, and an incredible mom. I hope you get everything you dream about for Noah. I hope I get everything I dream about for my Finley. Much love to you on your journey!
Good call, LJ. Very, very well written – a heartfelt rendition of our lives as we know it. Our family has vowed to stay as stress free as possible. Enjoy a quality of life after the desperate years you are living now. It’s been a long road – never had our full recovery, but James is a pretty great young man. We all need recovery time now. See you on the other side 🙂
More power to you LJ. Go get your boy!!! We will be here cheering you on and praying for your family every step of the way.
Lisa:
Thank you! Thank you for writing this, and thank you for all you’ve done and will do again. Your dreams, are our dreams, so know, that we all get it! 😉 I know you will get your Noah back and you will have dream #2!! Good LUCK to you and take ALL the time you all need to get there!!! Best of Luck !! Hugs!!
Also, remember, that we are all here, if you need anything!!! 🙂 We’ll be praying for your family and can’t wait to hear how you get to a real life dream # 2! 🙂
How powerful your words are. This broke my heart on what a tough yet important decision you have made. I am so thankful for your words and support to all moms out there. I will be praying for you and your son in your journey and that your dream comes true!!!
Go on, LJ. We all get it, we all understand. Focus on you and Noah. You’ve been able to bring us all so fr, we are now able to lean on each other. Beautifully written, thank you for sharing so much with us <3
Mascara is running down my face as I sit in the car reading this. While I am incredibly grateful for all that you do for the autism community, Noah comes first. I pray for healing for him and all of our children.
Oh my goodness. I got to that fifth-to-last paragraph and a wave of fear mixed with sadness hit me. Similar to when I heard that interview with Jenny where she stated, “… I’m just not going to write any more books on autism any more.” What?!? You can’t leave! You can’t *almost* lead us to the Promised Land, then we’re on our own!
No, you can. And you should. One of the most important lessons I learned from my dad is that you can’t over-extend yourself to help others while your own family needs you (more).
THANK YOU. Thank you for your activism and for helping to give me the tools I need to help my son and survive this marathon. I will miss reading your posts but look forward to when you come back (and tell us all about the other side :-).
LJ,
Every single word you write is cuts like a knife – so raw, so unapologetically REAL. Of COURSE it is Noah’s turn, and he needs his whole Mama to make Dream #2 a reality. While you are away, please know that you have an entire community here, ready to cheer you and Noah on, to listen if you need to vent, and to celebrate your every triumph. And of course, waiting with open arms to welcome you back to activism. In the meantime, know that my family will be sending continued love and prayers your way.
Allie
My lovely how hard that must have been to write for you. But I get it because I did it too. It’s not forever, it’s just for now. You’ll keep doing good but maybe more locally for a while. It’s so hard, it eats you up and we only have so much energy. Noah and your lovely family will have you for a wee while now. But you’ll be back chick. Love ya girl xxx
You are doing the right thing lady. We are all so grateful for your help but you deserve some time to refocus. Noah will recover, there’s no doubt he can with a mom like you. Thanks for all that you’ve done to get us on the right path!