March 2, 2016
The Rev
When I entered the autism community, I was told there was a mom I needed to get to know.
At the time, I was recovery focused. Science based. Medically inclined.”Who are her doctors? Does she know mitochondrial disease? Is she a glutathione expert? What’s her protocol? What labs will she tell me to run? Is she the gastorenterology researcher?” Of course, this mom had an encyclopedic knowledge of those issues, but her big problem was seizure disorder. As in, her son suffers life-altering, consistent, persistent, DAILY seizures.
When folks couldn’t really put the right words to her contribution to the health freedom movement they dismissed me with, “Just follow her on Facebook.”
So I sent a friend request to veteran mom, Michelle Guppy. Her son Brandon is pictured here.
She accepted.
When I began following her, I had a very small child who was profoundly ill.
She had a much older child who was profoundly ill.
No thanks, I thought. We will be free and clear of that sort of drama by the time our son is that age. I want to read stories about recovery and studies about gut dysbiosis. We won’t have these problems by the time we get to that age. Our son will be off to college by then. Nope. Not looking.
Can you see my monkey hands over my ears, eyes and mouth?
I
Will
NOT
Be
THAT
Mom.
Lalalalalalalalalalalala!
This sort of thinking is a by-product of recovery culture. In many ways, you have to have that clear focus in order to push your child over the finish line. You can only take in so much information and execute so many tasks and administer so many medical/behavioral interventions, talk to so many health professionals, and document so much data throughout the course of a finite day. Only so many minutes, and each and every single one of them is occupied when you have a child with iatrogenic autism. The neurotypical kids in the house? Too bad, so sad; they kinda have to raise themselves. In our world, a ticking clock is the monkey on your back. Every health professional who gets our kids is constantly reinforcing the biochemical assertion of the “window”: Only so much time to clean up these kids’ guts, get their neurology back on track, and kick-start their iatrogenically suppressed immune function.
As the days turned into months and the months turned into years, our son’s condition worsened. I found myself going to the page of the mom I was not going to be, for my daily dose of Hopeism.
Per her blog, Life with Autism, the term she coined, Hopeism, is ” . . . the belief that our faith and God’s faithfulness will collide!”
Here is an excerpt from her blog, written November 24, 2014:
Ten days. Ten whole days seizure-free. Not since May 11, 2014 has he gone that long without a seizure. It’s hard to describe how wonderful it has been to have him not down for the count because of seizures. It’s hard to describe how wonderful it’s been seeing him eat those precious calories seizures starve him of so very often. It’s hard to describe the smile that’s been on my face, though I’ve tried to temper it with the caution of what might happen in the next moment. Reflecting on that now, I do regret that. I allowed myself to not fully feel the joy of our seizure-free moments, lest that joy piss off satan and jinx the streak. I allowed myself to breathe more freely, but not fully exhale. I’m sure that’s just the unfortunate “Life with Autism and Seizures” conditioning I’ve been an unwilling participant of. When you’ve lived in crisis mode so long, it’s hard for your body to adjust to the normalcy everyone lives with daily with only a few temporary exceptions.
Then this morning.Our streak was abruptly broken.
The seizure-free counter reset.
Now, I want to be clear about what this means. This 10-day break was not a break from 24/7 vigilance. Her son is still unable to use a toilet properly. He still suffers immense eating challenges. Extreme physical pain. What she got a short break from was the mission-critical nature of seizures. She is still a full time caregiver for an adult child who cannot be left alone for any period of time. She is in 24/7 crisis mode.
She titled this blog, “Thankful for Challenges.” While most of us were preparing our home for visitors, cooking elaborate meals, fussing over details, or traveling for the Thanksgiving holiday, Michelle was thankful for a brief reprieve from the violence of the severe seizures she witnesses daily. Even clearer, most of us routinely drive to work or ready our children for school. Michelle routinely prevents her son’s death.
I grew to know this Hopeism she speaks of as the consistent real deal. If you read her blog you will quickly discover she is a Mother-Theresa-caliber faith liver-outer, truth deliverer. I remember when my husband began following her and read one of her blog posts on his train ride home from the city. His response was, “How does she stay that elegant when she is THAT in it?”
I have no idea, honestly. My pre-autism, “that’s-not-the-right-fork-for-this-course-put-your-napkin-on-your-lap” self has become a foul-mouthed sailor who most days sports what my husband calls a “uniform”: a hoodie that is almost always spattered with organic food (a.k.a. “real medicine”) stains, jeans, running shoes in case I have to take off after Noah, and a bun on the top of my head with all my unstyled locks knotted up inside it. I shudder to think how far I could fall from self-care if dry shampoo was even remotely compatible with my hair texture.
I’m eight years into recovery. My son Noah is doing better. Michelle’s son Brandon has made great strides thanks to the lifetime of work Michelle has put into his recovery. He no longer bangs his head every waking moment. But, the reality is, his waking moments are considered sacred moments — stolen from the seizure disorder that rules his family.
How is it possible one child gets better, and another still suffers so dramatically?
Another unfortunate piece of the underbelly of recovery culture is Blame. It is the nasty, bitter offspring of Comparison. No one will say it outright, but lots and lots of sidebar conversations in our community spread the notion that a child who does not recover has a mother who did not do right by him. A mother who “gave up.” “Maaaaaybe she isn’t doing everything she can.” I entertained that thought back in those early days as I read word after word of gut-wrenching testimony about daily life in the Guppy household. “So-and-So didn’t stick with it” I have heard time and time again from moms passive-aggressively positioning themselves at the right hand of the Father. While they sound judgey, they are really just trying to preserve their own hope, so it’s hard to malign them. Everyone is looking for the plan. The blueprint. The path. When a child’s suffering goes on and on, for many, this is evidence that recovery is not possible. So moms in the trenches dissect and dismiss that family’s truth so they can keep fighting for their own. They are already dealing with the legions of advertisers, medical professionals and the unlimited financial prowess of the pharmaceutical industry that owns the airwaves insisting autism is merely a different ability and our kids are just awe-somely-abled and not sick but rather “diverse.” Of course, if you are a regular TMR reader, you know recovery is possible and in many cases probable. But, you must also know, because vaccine injury and epigenetic illness can spider off into quite literally thousands of potential manifestations, that one blueprint for restoration simply does not exist for all children. While it is indeed the one-size-fits-all immunization program that got most of here, our children’s path to recovery is as unique and individual as they are.
My child got sicker and sicker and sicker before he got better and better and better, so this need to categorize and compartmentalize drives me bonkers. There is just no feasible way you could put a reasonable path or assign a repeatable, provable treatment standard to Noah’s recovery. It was up, down, worse, worse, worse, a million bucks gone, worse, worse . . . better, better . . . better. For YEARS, he got, worse. When I was still documenting we were up to 37 different interventions/protocols — not because we did not love our child with autism. Because he was in pain, could not sleep or communicate and tried to hurt himself and others throughout most of his waking hours. He was suffering, and we could not stand by and “accept” his suffering as the blessing society and doctors kept telling us it was. Michelle’s blog details the many routes they’ve pursued to bring relief to their precious son, as well. She has done everything she can do for her son, times a million.
In December 2012, TMR co-founder Sugah submitted this video to the Committee on Oversight and Government Reform for the public record. My son Noah appears just before Michelle’s son, Brandon.
Of all the controversial blogs we have published over the years, this one took a lot of heat.
How dare we showcase our children in this way? High-functioning adults purportedly affected with autism lashed out and called Michelle and I child abusers for filming our kids in this manner. How dare we show them in these weak and vulnerable moments –exploiting their suffering?
What possible motivation could we have to share this level of human suffering with the world — our own precious babies displayed in unthinkably miserable circumstances? To spare others. To spread the word. To put the real faces of the REAL children WHO ARE SUFFERING EVERY DAY out there so others could see the reality of daily living with vaccine-induced autism. What happened to our children WAS AVOIDABLE. What happened to our children was, and is, PREVENTABLE. Because the Committee on Oversight and Government Reform did not heed our warning, thousands more children who survived their routine preventative healthcare visits are following in our footsteps. We know because Michelle and I, and thousands of Thinkers like us, counsel them. If you can get through this three-minute video, kudos to you. If you can forward and share this blog so others may see as well, good on you. This was my life every single day for seven years.
THIS IS STILL MICHELLE’S LIFE EVERY SINGLE DAY. Every . . . single . . . day.
Yet, Michelle, no matter what, remains consistent and faithful. Never sloppy, never wavering. Steadfast. Over the years I have grown to respect and admire her beyond words. She was a Thinking Mom before Thinking Moms existed.
So, it is with great admiration that I announce Michelle as our first official Honorary Thinking Mom. Readers, meet and welcome the highly respected and deeply revered, Camo Mom!
With all she already has on her plate, her husband was recently laid off from his job. We would be so very grateful if our readership would consider donating to their gofundme campaign. Camo mom did not even start it. It was moms she has been inspiring and uplifting for years who read her Facebook post about their situation and took it upon themselves to come to her aid.
Please donate as much as you can, and become a regular reader of her blog.
Because no one conveys hope, Hopeism, like Camo Mom!
And, for me? The person who was not going to “be that mom?” Camo Mom taught me that I can approach the challenges of each new day with faith . . . or fury. Yes, what happened to our kids should not have happened. Yes, that their suffering has been repeatedly and systematically denied, is wrong. Yes, we live under unimaginably stressful conditions while the rest of the world goes on, seemingly unaffected (blinded) by what is happening to over HALF the population of kids in this country. But every single moment of the day we have the freedom to make a choice about how we will handle what has come our way.
It’s what we DO IN THE MIDST OF THOSE CIRCUMSTANCES THAT MATTERS. It’s what we do in the midst of our suffering, that gives us a glimpse of hope to carry on to the next best thing. Back in the day, when I was an emerging voice in the vaccine injury community, people wanted me to follow her not just because of her story, but because of her character. I am so glad I listened.
Thank you Camo Mom, for all you do and are! The Thinking Moms love you!
With Much Love and Respect,
~ The Rev
For more by the Rev, click here.
It is ironic that often in our own community, we can be our own worst enemies. It is essential that we try to understand that everyone is coming from a very different place, and both sides of a discussion have to realize that.
Years ago I was asked by ARI to tell our story. I did so in the generalized sense that space and time limitations allow in such newsletters. I thought I was positive, I thought I was clear that I felt more lucky than an expert who did it all right. But, I received a lot of feedback that was pretty nasty. I know that people are sometimes defensive, they had done the same things and it hadn’t helped, they had spent more money and their child wasn’t better. It is hard to relay to others that you are not being judgmental. I did way less than others did, as a single Mom I spent way less money than many I know. I did most everything completely alone. I don’t believe some kids don’t recover because Mom did it wrong, or didn’t do enough, I believe some recover and some don’t because as said above, every child is unique, perhaps some more damaged than others. Some of us got lucky, my child reacted dramatically to every single intervention and did not regress before getting better, she blossomed.
No one could do exactly what we did and get the same results, in fact most have already done more. I have no secret formula, I was simply blessed, lucky, and not a day goes by that I don’t understand that, even sometimes feel guilt for it.
If my child had not responded as she did, I have no doubt I would have moments like I heard from others that were full of resentment and even anger. I pray for every child in this situation every day. I got the Rev’s wish, my daughter has been accepted into college and our days are spent filing for scholarships and grants as graduation approaches. We still have challenges but I cannot complain about those. Those of us with kids considered “recovered” well speaking for myself, we understand you way more than you would ever imagine, because all of us at one point, were you. I still feel fury, for what my child went through, and what your children are going through. I will never ever give up the fight and will stand by you and all others until the end of my days. Thank you.
Beautiful truths, so honored to read your posts ~