We 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.
Why is this precious little boy still so sick?
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:
“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!”
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.
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!
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