Please Don’t Ask me How I Feel

The RevWe are the family that has done everything right.  The diet, testing, doctors (mainstream and alternative), biomed and homeopathic remedies.   The shelves of my office, formerly full of books about art and philosophy, are now packed to the brim with books about autism, autoimmune function, GMO foods, environmental science, behavioral science, vaccine philosophy and nutrition.

So, why?

Why is this precious little boy still so sick?

Noah

In approximately 24 hours my husband Dave, our Noah and I will be en route to an out-of-state doctor to find out.

I think most of you reading this post know we here at the Thinking Moms recently published a book.   It’s a collection of our personal stories, our varied journeys to difficult autoimmune diagnoses for our children.  We put our lives . . . our hearts . . . everything we are, individually and collectively, as the 24 founders of The Thinking Moms into this most important historical recounting of truth.

On a business trip to New York my husband snapped this picture of our precious between meetings:

book on shelfIf we are Facebook friends, you know my page has been inundated with pictures of amazing women, brave children and thinkers from every walk of life holding pictures of our life-changing book.

“Great Job!  So how does it feel?”  I was recently asked by an incredibly supportive friend.  I could feel the joy emanating off of her.  She was truly, in the depths of her soul, rejoicing in my accomplishment as a contributor to this book.

Which lead me to question why my response was so mechanical and dispassionate.   “Good.  It feels good.  Thank you so much for asking.”  That’s something you say to an acquaintance who really should be acknowledged for remembering something about you, not a dear friend.  Weird.  Deflective.   Yes, deflective is absolutely the right word.  I did not want to talk about it.

You want to talk about the book itself, great!  Let’s dive in.  I can talk about my co-authors and their stories like a belieber can tell you every detail of Justin Bieber’s life.   That I can do.

My feelings about the book itself and my small role in bringing it to fruition?  Meh.

To be candid, some weird ambivalent feelings started cropping up about a day after we launched. I began preparing for our trip and changed my FB photo to a snapshot of our Noah, when he was 6 months old.  Fellow thinker Zoey O’Toole commented, “God LJ, he’s so friggin cute!  Beside the point I know, but it needed to be said!” baby Noah

I chuckled to myself and felt very proud of our cute baby Noah.  I let her sweet words wash over me as I took in the photo again.  That adorable face.  Those beautiful eyes.  All there.

All.

There.

And then, not.  I thought back to the day this picture was taken.  I was showing off a birthday present from my husband, an interior decorator’s briefcase, complete with folders, cool tape measures, pads of graph paper, color wheels, designing pencils, and gusseted slots for me to store the countless home décor magazines I collected monthly.  Everything I would need to decorate our dream home.  That was the focus of this visit to my in-laws.

I want to go back in time to when this picture was taken and savor that child. I want to hold that warm baby so badly again.  I want to smell him and that God awful Johnson and Johnson lotion I slathered all over him, not knowing it was making him sicker.  I want to go back to when I didn’t even know he was sick! Life was so much easier!  So much simpler.  I want to go back to ignorance.  Or do I want to stop myself from ignoring my mommy instincts?  Either way, I definitely want a DO OVER, another chance.  I want our lives back.   I want my Noah!

I was originally not going to blog this month.  Too busy, I told myself.

“It’s just a little eczema. I don’t need to read that article about how it might be an indication of autoimmune illness that my friend gave me.  If it were important, my doctor would have told me.”  I told my too-busy self as I slathered steroid cream on my six-month-old and gave him a bottle of iron-fortified formula.  Let’s get on to what’s important!  Davenport Tan or Tuscan Brown for the sitting room?   

I have spoken out more times than I can count, both publicly and to parents who wanted to meet privately because they could not bear the thought that anyone in their lives might associate them with an “anti-vaxxer”.  I have shared Noah’s story with every reporter who will listen, I blog or write every month for a variety of publications, I support and promote the important autism nonprofits, fund raise, help other families, attend and speak at conferences, and volunteer my time to promote autism action.

GIVE ME MY SON BACK DAMNIT!  I want HIM.  I WANT HIM.  I WANT NOAH PATRICK GOES!  I want to squeeze him without his body going rigid.  I want to hear him laugh at something that is really funny, not his brother crying.  I want him to be able to tell me what he wants instead of pulling my hair in frustration.  I want this baby in the picture.  I want his sweet life so full of hope RESTORED and I want the institutions that harmed him brought to justice.  NOW.  That’s what I want and that is how I feel.  I feel like the book is a great starting point, like the first step in the Iron Man.  I feel like everyone and their brother is congratulating me for doing what I have an obligation to do.  “Way to go, getting up this morning, LJ!”  “Hey, nice job brushing your teeth and wiping your bum, girl!”

Until I see one of us linked arm and arm with the president of our country holding the Thinking Moms’ Revolution book for the entire world to see it, it’s not enough.   Until I hear every single public mouth piece admitting to this book’s historical significance and recommending it to every expectant mom, it is NOT enough.  It’s not enough to write a book like this until it becomes required reading for every educator and physician in this country.  Until my sweet boy’s health is restored, it is not enough.  So there you go.  That is how I feel, like I have so much work to do and I’ve just barely begun.

In the time it took us to bring this book to publication autism stats went from 1 in 100 to 1 in 50!  In just a few more months we will go from 1 in 50 to 1 in 29.  Yet most people are still listening to the authors of this epidemic who keep claiming “better diagnosis.”  Please.  PLEASE.  Help us wake up our world.  Buy our book.  Call your local library and ask them to carry it.  Start a book club and discuss it.  Give it to your neighbor, your friend, your kid’s bus driver, the waitress at your favorite restaurant.  Please help us save our children.  Hopefully, the next time you hear from me we will be several steps closer to recovery for our Noah.  Hopefully, the next time we meet all our children will be in a better place because we, the revolutionaries, have provoked our contemporaries to WAKE UP!

If you are having trouble viewing this video click here, or copy and paste this url into your browser:http://www.youtube.com/watch?v=t6LoMfAMowE

~The Rev

For more blogs by The Rev click here.

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14 Responses to Please Don’t Ask me How I Feel

  1. Lindsey says:

    This post resonated with me in ways I can’t describe. Yes. I WANT MY SON BACK. All of him. NOW. And I want the institutions responsible held responsible. NOW. I want this last year back, that was stolen from me, from him.

    And my heart breaks for the 1 in 30 families who this year will learn what this feels like.

    Sending you love.

  2. my heart goes out to u and your boy. god be with u in this journey and protect u both. I am telling anyone I know about this and it breaks my heart 2 see how hard people respond 2 this. I am one of the mothers that decided not 2 give any vaccine 2 my baby and I am trying 2 keep her as healthy as I can and protect her from all the chimicals in food and all the other product but is getting so difficult 2 find natural product or 2 trust that the ones we find they really are as natural as they are saying . is so sad 2 see so many sick children and is also sad 2 see how many parents refuse 2 believe the truth about what make them really sick. we are doing what ever we can 2 talk 2 people and open there mind before is 2 laitte , before they do another vaccine. I believe strongly that this is the wors enemy. god be with u and your son

  3. Pingback: Taking TMR To The Next Level | The Thinking Moms' Revolution

  4. nhokkanen says:

    It hurts to read your column, but your words must be spoken — and heard. I wish I could have prevented your son’s vaccine-induced autism. In 2004-2005 many parents met with their states’ Attorneys General trying to bring about a tobacco-style lawsuit to get mercury out of vaccines. They balked. And sadly today one of the key AG’s now works for industry preventing “toxic torts.”

    “How do you feel?” That’s the question that NYTimes reporter Gardiner Harris asked me THREE TIMES while reporting on Minnesota’s attempts to ban Thimerosal from vaccines. When I realized what Harris was up to, I told him I felt disappointed that scientific evidence was ignored. He did not quote me. His published article was erroneous from the first paragraph.

    It shouldn’t take firsthand personal experience to convince people to critically investigate vaccines. It shouldn’t take a 1 in 50 autism rate for the CDC to do some soul-searching and HONEST clinical research instead of twisting statistics. It’s a mad, mad, mad, mad world.

  5. B.K. (The Booty Kicker) says:

    You WILL get him back. Totally. Love you, LJ!!!!

  6. Don’t beat yourself up. I breastfed FOREVER and used only fragrance-free, hypoallergenic creams and my kid still has severe autoimmune illness (doctor says it’s mastocytosis), eczema that looks like he was burned with oil and is allergic to ALL foods with the exception of chicken, beef, and lamb–even allergic to pork, in case you thought all meats were OK. Last year he broke out with a nasty patch of psoriasis on the top of his scalp. He also has gut issues and sometimes shakes uncontrollably. Oh, and he’s severely autistic.

    It wasn’t formula and baby lotion that harmed your precious boy. I had to explain to the pediatrician what an adjuvant was–she thought I was concerned with mercury and tried to push more vaccines on my son who I think has suffered enough for “The Greater Good”, whatever that is.

    Like you, I worry that I’ll never get my son back.

  7. channa says:

    God says one day he will wash out every single tear from our eyes……..hang in there

  8. Mama bird says:

    I used aveeno, cause that was sooo much better than j&j. I gave my daughter all. Organic milk and baby food… When she was little she had the most AMAZING natural scent, she always smelled like fresh baked cookies… She was so alert and amazing then I noticed when she was in her crib sometimes she would shake uncontrollably not what I thought were seizures but tremors… Still have no clue what they were… And now, well now we are on the lighter end of the autism tunnel but I still feel cheated for both of us… Thank you so much for all that tmr has done in the past year!

  9. KFuller says:

    1in50 American families feel just as you do. GIVE US BACK OUR CHILDREN!
    I hope this trip heals your boy.

  10. Katina says:

    Brought to tears . . . but that almost always happens with The Thinking Moms. I have started reading the book, and I must say the one place missing on the list of people who need it, is the local pediatricians’ offices. If it weren’t cost prohibitive, I would place them in the offices, and return monthly to replace any that were removed either by readers who had to know more, or staff determined to keep the status quo. Same thing goes for the ob/gyn offices. For now, I plan on finishing my copy and sharing it, and encouraging others to buy it, borrow it, anything . . . not reading it is not an option.

  11. Cathy says:

    Thanks to you and all who made the book for sharing your stories. I have a sixteen year old daughter and I will definately be giving her a copy of your book.

  12. Saint says:

    I love you LJ. I just really love you.

  13. Sue Cranmer says:

    Crying, wishing the world was fair and everyone got what they deserved. Prayers

  14. Sylvia says:

    Once again, TMR has brought me to tears. I don’t know when it will ever truly be enough for those of us with children who are a fragment of their former selves. Our beautiful children, whom we love and are fighting for with every last ounce of energy and focus. Our babies who were once here with us, fully present, responsive, looking at us, taking us in with clarity in their eyes but who now see us through a hazy fog we’ve grown accustomed to. So maybe it will never be enough until every single one of us has our children back. But to be honest, that is not likely for many of us. So in the meantime, I will convert these tears to energy. Energy to keep shouting. Shouting until every last person in this country is thinking AUTISM. AUTISM-all the time, 24/7, much like he coverage of a natural disaster. AUTISM. Until our elected officials and government agencies acknowledge this natural disaster and some of the man-made risks that are feeding it. Rev, my heart goes out to you and your boy. And I am sending some of my tears to you. Take them. Use their energy. Safe travels and Good luck on this next phase or your journey.

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