Public Comment Period for FDA Vitamin and Supplement Regs is On!!!

I've been absent for awhile.  Childhood cancer has, unfortunately, been keeping me busier than usual.  Still, the world keeps turning.  And so does politics in America and all of its attendant messiness.  It's late and I'm not in the mood to edit so please read with a forgiving spirit.

Two political issues are at the forefront of my mind tonight as I shelve the idea of catching any sleep in favor of putting those issues into your minds.  They are our president’s willingness to cave on the emissions standards and the FDA’s eagerness to ban supplements.  I’m feeling a little grumpy about these, so be forewarned. 

Late at night . . . too tired to edit . . .

It’s in the dark of night that fear’s cold hand catches you in its grip.

You’ve perhaps noticed the lack of posts over the last couple of weeks, as I’m usually a weekly poster.  My absence punctuates the answer to why children’s diseases lack funding and advocates.  It’s sorta like expecting soldiers in the trenches to negotiate a cease-fire while they’re fending off the fire.  We’re down here, doing all we can, and sometimes it saps our energy, while others there truly is no time to give to anything else but.  I have these fantasies about running 50 5ks in 50 states (a sort of Dean Karnazes thing without the superhuman athleticism) for childhood disease awareness;  but because of what cancer has done to my family, I lack the financial wherewithal to pull off such a thing.  Or maybe just a cool fundraiser, but again, largely as a result of cancer, I am isolated.  My old contacts have gone on with life and are no longer part of mine.  My career is a relic of a now-unfamiliar past.

I had a break, a nice little hiatus, from cancer treatment.  My daughter hasn’t had a drop of poison since Thanksgiving 2008, and while I’ve been ever watchful for cancer’s unwelcome return, I have to admit . . . it took me by surprise.  Isn’t that how it works?  You worry and you worry and just when you start to think “well maybe . . .” the evil c pops right back into your life.  Well, for some there’s no hiatus, so I have to be grateful for the breather.  For some it’s an unrelenting assault.  For us . . . well, we don’t really know yet.  I’ve steadfastly maintained that we don’t KNOW that cancer has “returned” because we never knew for sure that it left . . . and I’ve been relieved that the neurosurgeon who will no doubt offer to slice open my daughter’s spine again is on another continent where he and his scalpel can’t touch us. 

I know that the current status of medical wizardry has little to offer for neuroblastoma patients who relapse.

Sunshine on my Shoulders Makes Me Happy and Healthy!

I don't know about the rest of you, but I became a parent in the midst of the "slather every inch of your child's body with sunscreen every second of the day lest you relinquish him to an early death from melanoma" dogma.  Now, as the parent of a child with cancer, and a friend of a young man who died from melanoma at age 38, I don't want to seem like I'm trivializing.  However . . . could it be that, like with so many things, we've been sold that bridge in Alaska in the form of products we don't need and that don't even do what they claim to?

In Defense of the Passionate Argument

Thank you, Liz, for posting.  It is your comments that inspired this post.  I hope that I won't offend you with my further comments.  This is the closest I've ever gotten to a real discussion of these issues.

Liz is a blogger.  (She writes about farm life, but she is a politically-energized mom as well as a farmer.  You'll find her blog, if you're interested, at http://iafarmwife.com/.)   In researching an earlier post I ran across her blog and became one of her "followers."  In some ways, her writing is a balm to my occasional bouts of homesickness, when I'm mired in the political drama that envelopes me here in Michigan.  When I read about pickling a cow tongue, I feel a little closer to home.  I come from the folk that pickled everything, you know.  Even watermelon rinds.  I come from the folk that don't throw anything away, ever.  The anti-consumption element - that's rural America, where the memory of the Great Depression lives on through the self-sufficiency and thrift of its people.  We didn't recycle, but then we didn't waste, either.   We had the first two R's down pat; if you do the first two, you don't need the third.)* 

It is true that I will blog with passion and emotion.  However, those things do not necessarily exclude logic.  They are necessary to any endeavor.   And it is because of my passion that you can trust my intent.  Don't hesitate to correct me when I might be wrong about something.  While I wish I understood it all, I know that I don't.  If you're knowledgeable, share it.

It's Not Sustainable, it's unjust, it's immoral . . .

Grab your coffee . . . this is long.  If you don't have a lot of time, just read the first link!

My goal here is not to impress my ideas upon you so much as to share with you the cogently and / or eloquently stated ideas of others.  The words of Vandana Shiva, which you will hear upon clicking the link below, fall into the category of both.  (We'll get to my ideas, less cogent and less eloquent, a little later.)  Give her a listen.

http://youtu.be/vi1FTCzDSck

If you're a follower of such things, then you already know the damage that Monsanto has done in India.  Google India and farmer suicides and you'll have all sorts to read about. 

Must-See TV for Sick People

Okay, so it's not really TV - it's a movie. A documentary movie.  I would rather watch a good documentary than anything else, as you've all probably figured out.  But this one is so enlightening on many levels.  The FDA and others have fought relentlessly against the use of this antineoplaston therapy, and the movie is about the battle fought (and won, not by the FDA but by Dr. Burzynski.)

I suspect that this movie won't be widely available in rental chains.  So tonight's the night.

While you watch, keep one thing in the back of your mind.

Pathways.

Here's the link:

http://articles.mercola.com/sites/articlewwws/archive/2011/06/11/b
urzynski-the-movie.aspx

Pathways . . .

I've mentioned before that my nephew is autistic.

Well, I'm hoping that my sister won't kill me for using her as blog fodder, but . . . that's what I'm gonna do.

She found a DAN! doctor for her son, bade her time on the waitlist, and saw him earlier this week for the first time.  Her excitement was contagious.  And my sister is not a demonstrative type like me.  She's reserved and dignified; she doesn't gush like I do.   Still, I could tell:  she's excited.

But this post will not be about autism.

Nope.  It's about . . . pathways.

The future of disease . . . prevention?

from Siddhartha Mukherjee's The Emperor of All Maladies:  A Biography of Cancer . . .

"Cancer at the fin de siecle," as the oncologist Harold Burstein described it, "resides at the interface between society and science."  It poses not one but two challenges.  The first, the "biological challenge" of cancer, involves "harnessing the fantastic rise in scientific knowledge   . . . to conquer this ancient and terrible illness."  But the second, the "social challenge," is just as acute:  it involves forcing ourselves to confront our customs, rituals, and behaviors.  These, unfortunately, are not customs or behaviors that lie at the peripheries of our society or selves, but ones that lie at their definitional cores:  what we eat and drink, what we produce and exude into our environments, when we choose to reproduce, and how we age.

This passage is toward the end of the book - an amazing book, one I'd highly recommend and since it won the Pulitzer last year, I'm apparently not alone in my assessment of its greatness.  After chapter upon chapter of the history of a disease whose very name is terror, culminating in the unveiling of its secrets - the 13 pathways, the key to all cancers - one would be inclined to agree with Mukherjee on this one.  Like the very organism from which it stems, cancer is designed to adapt, to respond to insults, to find a way to keep on existing.  So every treatment that hopes to kill cancer may just succeed in making it stronger.  More virulent. 

"What does not kill me makes me stronger." 

Reducing Regulatory Burdens Act (S. 718) is in the Hopper . . .*

I am so sorry to post again so soon.  I know I'm a windbag and all.  However, when something comes up, I've just gotta pass it along.

So I've learned that S. 718, the creatively titled "Reducing Regulatory Burdens Act of 2011," is up for a vote in the Senate.  The House version passed back in March. 

A Brief Note on Simple Logic and Taking Responsibility . . .

I have a couple of seemingly unrelated concepts to share with you.  For most of you, the relationship will become obvious as soon as I reveal them.  But many people have not put the two together, evidencing an almost pathological aversion to simple logic.  Unless they just haven't thought of it before.  (Our logical capabilities may have atrophied in the spoon-fed information age.)  So just for the fun of it, let's assume that the latter is the case;  here comes the sharing.

(Yes, I know.  I have a weird sense of fun.)

Stress, Values, and Saving the World

There isn't much harder stuff in life than dealing with a child's illness, whether it's a chronic and unrelenting uphill battle or an impending death.  We all have these battle scars, we're all a little PTSD - post-traumatic stress disordered - and it's so very hard sometimes to match strides with the rest of the world.  Because it becomes your world. 


I went to some silly stress reduction class a couple of weeks back and there was the usual discussion of the most stressful life events.  Several common stressful life events were assigned number values. 


(Apparently none of us was polled.)


According to the stress experts, the most stressful event one can endure is the death of a spouse.  Okay, I can go with that one.  From there, though, it sort of fell apart for me.  Just by way of example, divorce scored a 73, while the death of a close family member besides the spouse scored a  63.  Not sure whether that's supposed to include the death of one's child, but nothing else on the list fit.  The other item that might apply to having a sick child - "change in health of family member (not self)" - scored 44, while pregnancy scored a 40 and "sex problems" 39. 


Hmmm.  No wonder we feel so isolated. 

The Promise of Spring

My spirits are lifted by the recent greening of the grass and the appearance of buds on the trees, the random tulips and abundant daffodils.  Spring has most definitely and finally sprung, and my life energy has returned with it.  Not the death of Osama bin Laden, nor the marriage of royals, could divert my attention long from the promise of spring.

My daughter Rori is my spring baby.

She turned three last month.  Last year at this time, I sort of went through a "last year at this time I was . . ." phase, and I suspect that will be more so this year, as I prepare to make my first trip home to Missouri since I bundled up my baby and left for Michigan, sleep-deprived and frightened, fleeing a misguided doctor who was convinced that leaving my daughter with me for one more day would cost the child her life. 

Sometimes I have to take a deep breath and say to myself, "yep.  That really did happen."  Because it truly shook the foundations of my beliefs.  So spring is a mixed bag for me.  Glad to see the sun, but oh the memories . . . I suspect that all of that will lessen over time, as my daughter continues to thrive.  All things considered.  She is disabled, in the normal definition of "disabled," but she is healthy and she is here.  Anger hits me, randomly, when I notice with not a small amount of panic that her hip appears to be further dislocating, and if that STUPID doctor had done her job we might have treated her sooner and avoided this altogether, but all I can do is tell other parents to be proactive.  And they look at me like I'm nuts, usually, because EVERYONE knows that the doctor knows best . . . still, it's my life's work, to convince mothers to embrace their inner momma grizzly and to trust her.  Trust her!  She will never betray you.

People want to believe that all is well in their world.

Once upon a time, I believed that.

I Just Can't Say It ANY Better Than This!

April is Autism Awareness Month.  Since it's nearly the end of the month, (where did it go?) I wanted to find a good topic for autism . . . so I set out across the broad expanse of the internet to see what I could find.  There is certainly a wealth of informants, but what I was really after was a parent's perspective.  Parents blog.  I just knew they were out there.

And they were.  On a blog called Life on the Roller Coaster, written by an autism mom, I found what I was looking for.  It's a blog with posts alternating practical advice for the newbie autism parent, mommy rants, and policy statements.  You all know how I love a good mission statement!  Anyhoo . . . backtracking through her posts, I ran across a fantastic article from the magazine Orion.  (The blog, by the way, is at http://thirning.blogspot.com/.)  The article is actually an excerpt from a book, a book written by a cancer survivor mom of an autistic child, and it's called Raising Elijah.  I will read the book and most likely share more of its content with you.  For now, this is a wonderful essay regarding the toxicity of our environment and its profound health effects on our beloved children.

Brief pause.

In my endeavors I am constantly accused of being unrealistic, a bleeding-heart with a lack of budgeting skills.  So I am hesitant to share this favorite quote from the article, for two reasons . . . it might scare you away, and it might propagate one of those comments about my . . . practical side.  Or lack thereof. 
Still, it's a good quote, so I'm going to go for it.  It's about pesticides, but the rationale is what I'm drawn to.  Insert any industrial chemical and it still works, so I'm not just picking on the pesticides: 

"Those who argue that abolition for organophosphates is unrealistic need to explain how realistic it is to run a high-quality public school system when more than 9 percent of children can’t pay attention and one dollar of every four must be directed to special educational services." 

Quick and Easy . . .

http://nssdc.gsfc.nasa.gov/image/planetary/earth/apollo17_earth.jpg

Before we go even one step further, click that link, and just soak it in for a sec.

Pretty awesome, isn't it?

What I want to convey to you with the commencement of today's post with that beautiful and awe-inspiring image is simple:  that's IT.  That's all of the Earth that there is.  That's all of the sky, land, water. 

That's all there is.

We celebrate two important events this weekend.  Those two events are Easter - the resurrection of Jesus Christ, the full circle of an amazing life, one life sacrificed for all mankind.  I'm not qualified to speak about that event, really; my thoughts on God are weird, probably not very mainstream, possibly somewhat controversial.  I guess having had a child struck with cancer thrust me into a whole new way of thinking about God.  I don't feel like defending my theories on meaning and personal trials and God, so I'll leave those in obscurity.

The other event is . . . Earth Day. 

Caution: Hormonal Female at the Keyboard!

Just came back from a HeadStart conference and met lots of really great, really committed parents and educators.  I am thankful today that the federal budget does not include a 22.8% retroactive cut for this important and universally beneficial program.  What's to come remains to be seen, as with all things, but for today, we can breathe a sigh of relief.

And then get back to work.

I met and observed parents and teachers who deal with kids on a daily basis that have things like ADHD and autism and their desire for answers and help was palpable.  Maybe I'm more sensitive to it now, maybe I'm projecting my own emotions - I'm never sure.  But I can't help but feel that what's there is something I can understand.  That all of you can understand.  So I ask again that all of you broaden your scope, open your weary hearts just a little wider, and recognize that whatever ails your family - because childhood illness is a familial ailment - there's a whole lot of people out there going through a very similar thing.  It just has a different name, that's all.

So the topic for today, as you might have guessed from the title, is hormones.  While I'm trying to include the call to action in every post, I feel like I'm failing to remain true to my original inspiration, and seeing those moms tear up as they talked about their autism struggles brought me back a little bit.  Hearing about little Noah's struggle to hang on as cancer takes over his little body . . . brought me back.  We have to do better for these kids.  I don't know that pressing for more research is necessarily THE answer.  It's an answer, but maybe there isn't just one question, you know?  We have to be relentless, creative, practical, open-minded, and multi-pronged in our approach.  For all kids.  For our kids' kids.  Whatever crazy shit I might come up with, please know that it's all for them, and mine.  Yours.  Ours.

Anyway,  hormones.

Health Care Reform HELPS our sick kids - all of them!

One of the most controversial legislative successes of the current administration is healthcare reform.  Some of those provisions — which would prevent insurers from denying children coverage because of preexisting conditions, allow young adults to stay on their parents’ insurance until age 26, and gradually raise the allowable annual caps on coverage — have already begun to take effect, even as Congress expects to revisit the issue before the session is out. 

McConnell Inhofe failed . . . this time.

Had the amendment gotten just ten more votes, it would have passed.

If you don't know about the McConnell Amendment, let me tell you.  McConnell seeks to eliminate the Clean Air Act's tighter restrictions on greenhouse gas emissions by taking away the EPA's authority to act altogether. 

How does it do that, you may ask?  Well . . . it just says that the EPA can't do it.  But there's more.  If you read the Definitions section carefully, you'll see that "greenhouse gases" (GHGs) includes more than the standard six known GHGs, such as methane and carbon dioxide.  Under the McConnell Amendment, it - the term "greenhouse gases" - includes any substance covered by the Clean Air Act.  This, my friends, includes a number of things, obviously, but most disturbing is that somehow under the McConnell definition GHG also includes . . . mercury.

There's not a climate scientist on Earth that considers mercury a GHG.

If your child is sick, your party affiliation is moot.

Greetings.

I have become concerned that I am doing a poor job of making my point, the point that resulted in this blog.  As the parents of sick kids, we have a very specific set of concerns that exists regardless of whether we are a Republicans or a Democrats. 
Learn about the issues that impact your child's health and vote accordingly. 

Your cause supersedes and transcends such trivial philosophies as the redistribution of wealth, size of government, military vs. social spending . . . Okay, those aren't trivial.  But just because your party of choice falls on a particular side of an issue doesn't mean that you must also fall in, lock-step, with that point of view.  In fact, your input, with your personal stake in the outcome, carries a lot of weight.  Especially if you're a card-carrying, loyal party member who disagrees with the party position.  Trust me, they won't kick you out of the club.

So please, if you haven't considered calling your senators about the McConnell amendment, please do so.  You can locate yours by visiting http://www.congress.org/ and entering your zip code in the search box.  There are links to your senators' contact info.  You can call or email, even find them on FaceBook . . . if you want to hear firsthand what your senator's position is on this issue, ask to speak to one of the aides.  (You're not going to be talking to any senators, so don't get nervous.  It's not bad.)  Not every Democrat is opposed to delaying clean air regulation!  Not every Republican believes that we have to completely castrate the EPA in order to enhance the business climate!  We're realists.  A compromise is necessary. 

We all want clean air.  But the statement "we all want clean air"  doesn't really cover what's truly at stake.  There are very real economic costs of mercury pollution.  Consider the effect of mercury on cognitive function.  "The reduced productivity from just one pollutant, mercury, found in hundreds of thousands of children's bodies at levels that cause loss of intelligence, costs our nation at least $2.2 billion and as much as $43.8 billion annually.  If the cumulative effects of environmental toxicants reduce the average American's IQ by just one IQ point, the annual cost to society would come to $50 billion and the lifetime societal costs to trillions."  (from Poisoned Profits: The Toxic Assault on our Children, Philip and Alice Shabecoff.)  The mercury load in our environment is growing at a rate consistent with the surge in neurodegenerative diseases, including autism; mercury is a proven neurotoxicant.  Is there a connection?  Maybe, maybe not.  But maybe.  And mercury concentrations are higher in kids than in adults - 1.7 times higher in umbilical cord blood than in the mother's blood at the time of birth, evidencing that kids don't excrete this toxin as well as adults do.  That little bit of information came from a senior EPA scientist, according to the Shabecoffs . . . we want our kids to breathe clean air, right?  We all want the mercury levels in our environment to remain stable rather than increasing, right?  So don't let them sell you their clean-air-or-economic-ruination argument.  There is a middle ground, and the hardliners deserve to lose the argument.  Status quo may be the best bet, for now.

We cannot risk losing any ground here. 

I support Senator Stabenow's alternative.  It would delay the imposition of the new regulations for another two years, which is unfortunate, but would also offer tax incentives to those who move ahead with the changes.  It doesn't take away all of the EPA's "power"  (not that the EPA is powerful in any real sense, but it's all we have.)  It just adds more time to the compliance timeline.  Maybe that's the only feasible option in this climate right now.  And we know all about choosing from a menu of unattractive options, don't we? 

And Stabenow's is not the only option.  And frankly, you don't need to promote one:  just say "No" to the McConnell Amendment and we'll see what shakes out. 

Call, email, message on FaceBook.

Let's face it:  we are going to need the EPA.  (It's interesting to note that while the McConnell amendment does away with the EPA, there's no provision for an alternative agency oversight.  Sure, it's pro-business . . . feels kinda third-world to me, though.)  So muster up your inner activist and make the call.  Write a script if you've got stage fright.

Don't vote GOP.  And don't vote "climate change" either. 

Vote Parent.

Thanks for your careful consideration of this matter, and sorry for the hasty, poorly-edited post, but the clock is ticking.

Man vs. Food, reconsidered . . .

More on food today.  The title above doesn't actually describe the content of this post very accurately.  However, I was thinking about all of the popular culture regarding food, the modern (I think) phenomenon of the eating disorder and emotional eating, the obsession with the calorie - it's like food is our enemy.  But only in terms of whether it will make us less attractive. 

(Now, this is not to deny that eating disorders are very, very serious medical matters for the people who have them.  They aren't just about food, they're much more than that.  However, with headlines such as "Dying to be Thin," it would be a wonder if the general public didn't think they were all about vanity.)

Man vs. food.

Food, as we know it today, as it exists neatly and attractively packaged on your grocer's shelves, may very well be the enemy on a certain level.  The raw food guy in that "Food Matters" film hit the nail on the head when he marveled at the fact that we're willing to spend all of our money on so many things, yet want groceries to be artificially cheap. 
Of all the things we do on a daily basis, none affects our health as much as our food choices. 
Okay, unless you're downstream from a tannery or living on top of a TCE-polluted groundwater plume or just in a high-traffic, high-smog area.  But with three meals a day, that's a lot of opportunity that most of us aren't even thinking of.

(What's "Food Matters," you ask?  It's another documentary.  I watched it earlier this week . . .   I was thinking it would be another version of "Food, Inc.," but no, it's definitely a different film.  I thought about twenty minutes in that it was going to be anti-farm, but it ends up being more of a pro-vitamin, anti-drug thing.  Sort of a "vitamins are what you need, not a 'pill for evey ill.'"  No Michael Pollan, though, so it wasn't as compelling to me as "Food, Inc." was.  An interesting idea they present is that there's a double-standard with regard to promoting nutritional remedies and pharmaceutical ones, and that it's primarily coming from the FDA.  At one point the nutrition folks are talking about how medical doctors don't talk nutrition with cancer patients.  I can't speak for everyone, but I can say that's true for my experience.  The only time anyone ever suggested a supplement for Rori was before she was diagnosed, when they thought that starvation was the problem.  Incidentally, for any of you who signed on for a free month of Netflix, this one is also available instantly.  It's worth a watch.)

Now, if all I wanted to write about was better food, I would just share websites on FaceBook.  But I want to relate those issues to our deepest concerns, which are always for our children.  Always.  What does this have to do with sick kids? 

Two things:  the deficiency / toxicity theory, and the science of epigenetics. 

I hate to keep giving you links because these posts of mine get very long.  However, I looked up the Time Magazine article on epigenetics that I referred to before.  Or at least I think I referred to it before . . . anyhoo, read it if you want a more thorough treatment of the topic.  Or . . . in a nutshell, it's the study of how non-genetic material affects genetics.  Or how a non-genetic material affects the expression of genes.  What you do during your life can affect babies you're not even carrying yet.  And what you do while your baby is in the womb has longer lasting effects than once assumed.  Those effects may not even be expressed in this baby, but possibly in its babies later on.  So the notion that "you are what you eat" may be expanded, under the theory of epigenetics, to mean "you and your progeny are what you eat." 

Here's the link for the article: 
Why Your DNA Isn't Your Destiny

A cautionary note:  let's not use this plethora of information as an excuse to give up, to think that one way or another we're doomed.  Let's process this information together and pick and choose among it how we can make changes that will affect our future generations.  Not all changes will appeal to all people and remember, this is not an all-or-nothing proposition - we must believe that every change, no matter how small, has meaning for our health and the prevention of future disease.  So don't be discouraged.  Be mindful. 
Own your choices.  It's very empowering, and that's always a good thing when you've been blindsided by your child's sickness.

(Do any of you ever recall saying "Oh, we don't care what it is, as long as it's healthy" and never really thinking in a million years that it wouldn't be?  I do.)

According to the epigenetics theory, all of the pop I drank while I was carrying my son would increase his chances of being diabetic someday.  That's a very loose translation, but you get the point.

I sometimes wonder about all of my stress, all that adrenaline and cortisol and epinephrine in my body while Rori was in it, and wonder if her subsequent diagnosis with a cancer originating in her parasympathetic nervous system might be explained, in part, by epigenetics.  Or maybe all of that "fight or flight" hormone coursing through me, and through her as well, caused some kind of breakdown.  Such are the thoughts that creep into my mind when I'm not busying it with other stuff.  (Sounds like I obsess.  I don't.  I just wonder.)

And I wonder how long it will take the negative effects of GMOs to "crop" up in humans, if the lab animals so readily succumbed.  (Depending on whose data analysis you buy into, of course.) 

So I want to talk more about GMOs. 

There is much going on, things are happening so fast; what I hope to relay today is how precarious our ecological future is, how precarious our ability to feed ourselves is, how precarious our children's health is - if we don't find a way to buck the GMO trend.

Some literal but misguided genius unleashed these GMOs without first covering all of the plausible eventualities. Before we even knew what was happening, a majority of the farms went GMO, not that there was much choice.  Remember when the BP oil spill occurred, and before it fell out of the headlines the oil companies were already setting their sites on drilling under glaciers? They didn't have a plan for how to deal with a leak under those glaciers, should one occur. In the news we were again and again confronted with the question of why BP was allowed to start deep-water drilling without a viable plan for such a disaster as this, and before BP could even give us a credible answer we were talking about drilling under glaciers. Because it's always about the supply. You would THINK that people would be saying "now hold on a minute here, we need to figure out first what you're going to do if there's a spill before we let you break any ground." No one was saying that, really.

Nope. Drill baby drill, as the saying goes! Pocket the cash and worry about the consequences later. They'll be someone else's problem, anyway. (Ours.) (Our children's. Sorry, kids.)

If you're thinking the farmers are the ones pocketing all of that cash, you would be mistaken.  The patent-holders are holding the purse.

With GMOs, we're moving onto the next thing so fast that we've not yet made the debate public regarding whether GMOs should be created in the first place. It's the future of food and not one of us was invited to the debate.

So we need to crash the party.

Just as the economically disadvantaged are too busy scrambling to make ends meet to spend their time protesting unfair policies, the parents of sick kids are too busy taking care of these kids to enter debates like this one whole-heartedly. Everyone else has the luxury of indifference. But we don't, do we?  We know about all of the things that inexplicably go wrong.  We know that these things matter - we've seen the consequences.

GMOs are here to stay unless we get busy. The Supreme Court says they can patent them. The USDA and FDA says not only can we eat them, but we also don't need to be told that we're eating them. I'd personally like to avoid them. As people become more aware of the significance of our food's production methods, they will care very much about what they're eating. The industry saw this coming; that's why they fought so hard against labeling in the first place.

GMOs may well be a disaster in the making. Anyone who doesn't think this is a possibility simply hasn't learned enough on the topic yet.

So take a few minutes to read about Aggie.

Aggie – A GMO Primer

Get it?

It's supposed to be simplified but it's a little complex anyway.   And long.  But it's a complicated process.

It is up to us to do a couple of things.

First: don't demonize the farmer.

The farmer is our friend.  He feeds us.  He feeds us what we'll buy from him.  When a product sells, when there is demand for a product, that's what you sell. If no one is buying your product - or when you face lawsuits for growing crops that have been pollenated as a result of proximity and wind direction, things you can't possibly control - it's not an easy choice.  So don't hold it against the little guy who's just trying to feed his family, too.

Demand the other product.  The non-GMO product.  Demand it with your dollar vote.  How?  Look at http://www.nongmoproject.org/consumers/understanding-our-seal/ to learn how to identify non-GMO products.  Their seal is pictured at this link.  Healthy Child, Healthy World (see left) also has some useful information on buying non-GMO produce.   When people buy, producers listen.  It's simple.  Remember that food is not nearly so cheap to produce as our grocery shopping experience might have led us to believe.  Prices are artificially low, for different reasons that are honestly beyond my ability to relate in a nutshell. 

It might interest some of you to know that FarmAid is still around (remember FarmAid? John Mellencamp, Willie Nelson, Neil Young, Dave Matthews, and a host of others will play this year's concert on October 2nd in Milwaukee.)  FarmAid, the organization dedicated to saving the American family farm, has taken a strong stand against GMOs.  Check out their website for more points-of-view on this important topic.  You'll find it at  http://www.farmaid.org/. 

Second: press your legislature for a different approach.  Let's ask them to revisit the labeling issue.  We're not asking them to say GMOs are scary; we're asking them to honor our right to know what we're spending our money on.  Because we don't know yet if we should be scared.  Demand labeling.  It's that simple.  Visit http://www.congress.org/ to find your representatives and, as always, visit my list of pertinent links at left to find what other actions you can take.

Because you know what?  This is a governmental issue, more than anything else.  Labeling is regulatory.  Patenting is regulatory.  Government is the place to go.

In the meantime, shop wisely, and eat well.  You may not have all of the information laid out there for you, but with a little effort, you can make some fairly wise choices.  It's a learning process, one that will serve you well.  Making the effort is a way of putting your money where your mouth is, so to speak.  Talk the talk - to your friends and family and to your governmental representatives - but also walk the walk.  Preferably at your local farmer's market.  Buy non-GMO, non-convenience, minimally-processed foods.  USDACertified Organic food is non-GMO. 

Food is really not the enemy.  Ignorance and complacency are.

Food for Thought . . .

I had trouble posting this last night.  I crashed something . . . after a night's sleep and morning errands, this seems a little long and maybe even a little too soapy.  But I'm posting it anyway, if for no better reason than I'm simply not starting over. (I'd just get all fired up again!!!) 

So here she blows.

from The Doomsday Vault:

All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed.  Third, it is accepted as being self-evident.-Arthur Schopenhauer, German philosopher (1788 - 1860)

I have been overwhelmed over the past few days with some really astonishing political events
occurring here in Michigan. It’s distracted me from my work here; however, some things are so
broad in their reach that you just have to enter the fray. I’ve got my Thomas Paine on, I’ve got
my Patrick Henry on, I’ve got my Samuel Adams on! So even though I had more to cover on the
idea of the non-toxic home environment, I’m going to shift into an entirely different area that’s
really gotten under my skin this week.

Freedom and Liberty. And food.

I’m feeling a touch nostalgic. Could just be that I’m just getting older. But I fear that for many
of us, with the changes occurring at such a pace, we’ll never be able to keep up with them,
especially while we’re consumed with such things as our kids’ health, keeping our homes, finding jobs. Let’s not let the crisis atmosphere prompt us to sacrifice important rights and liberties. This is our children’s world. We mustn’t trade it for a few creature comforts. “Hey, honey. Sorry about your inheritance. I traded it for a cheeseburger.”

If we are what we eat, then we should care a lot about what we’re eating. And where it comes from. My proposition for today is that we have the right to know what we’re eating. And that we have the responsibility to find out - if not for ourselves, then for our kids. A wealth of evidence indicates that their young, developing bodies are so much more vulnerable than ours.

I’m homesick. I’m worried about the direction we’ve taken. I’m concerned about these
children’s health epidemics. And I’m sad about . . . farms. And food. So let me just say right off the bat that if I’m missing the mark here, you farmers, please weigh in. Teach us what we need to know.  This isn't an indictment of farming in America - it's an indictment of factory farming everywhere.

I grew up in Northeast Missouri. Dirt and gravel bordered on either side by crops marked with
signs that read “Kent” were our roads. (I remember wondering, as a young girl, who this guy Kent was.) We shared those single-lane roads with all manner of farm machinery. The friendly farmer behind the wheel would always drive off to the side and wave you around when it was clear. Sometimes the Halls’ pigs would get out of the fence in our back yard and raid my mom’s garden, in spite of all the potato peels and various appetizing offal we supplied them with in the days before trash collection and sink disposals. Or if the Halls had the cows back there, we’d worry about the big intimidating bull getting out (after all, the pigs did.) Across the street were more cows. Up the hill, corn. Driving down a country road on a summer day, even with the sweltering heat and no air conditioning, the smell of the hog farms could force those windows right up. I wasn’t a farm kid. I was a “town kid.” But almost everyone I knew farmed.

When I moved back to Missouri, the local hot issue in the spring of 2008, when baby Rori was born, was whether a CAFO (concentrated animal feeding operation) could be moved onto the land next to a guy’s farm while he was overseas serving in the war. The odors from that CAFO and the other attendant pollution would render his home unmarketable and possibly uninhabitable. I think he lost that battle and I think the CAFO went in. It’s a completely different system from the farms of my youth.

These highly efficient operations produce the great majority of our meat. They are not farms.
They are factories.

Food . . . It’s so basic. Everyone’s gotta eat. Rich, poor, middle class . . .
we all eat. Seems that nowadays, though, food isn’t really as basic as we’d like to think. In fact, it’s downright complicated.

This week, I want all of you to watch a wonderful documentary entitled “Food, Inc."  You
can buy it or rent it. If you go to http://www.netflix.com/ you can sign up for a free 30-day trial
and watch the movie instantly on your computer or game system. Or you can wait for
the DVD to come in the mail. It starts off a little slow unless you’re already a fan of Michael
Pollan, but it sucks you in. If you’re not misty by the time the credits roll and the
Boss sings the classic “This Land Is Your Land,” you need to have yourself
checked out.

The movie really focuses on two aspects of commercial farming - the CAFO and the genetically-modified crop movement. Genetically-modified organisms or GMOs, they are called.  I know that this will sound like paranoia to some: why not put science to work in solving world hunger? How can that be bad? What’s so wrong with genetically-modified crops? A couple of things. 
       
They require and tolerate more pesticides and herbicides than non-genetically modified
crops. They were created to withstand those chemicals (which are manufactured by the
same folks making the GM crops. Interesting.) What’s more is that these crops have
never been proven safe for either humans and other animals or the planet. We don’t
know their nutritional impact and we know that they increase our toxicity burden. [In
fact, I can’t think of the guy’s name right now and maybe he’s in the movie, but after the
(industry-sponsored) experts claimed the data showed GMOs safe for animals, this guy
reviewed the data and said that it showed the exact opposite - multiple organ failure in the
animals fed a GMO diet. Is that any worse than, well . . . not eating?]

It’s an odd arrangement when a chemical company owns an entire food,
which they’ve genetically altered to withstand astonishing amounts of
poisons so that they can pour more poisons onto the plants, poisons that
they also manufacture and poisons that we will put into our bodies right
along with the food. Perhaps the upside is that, knowing the genetic
code of the food and the chemical composition of the chemicals, they’ll
be in a prime position to formulate a cure for all of the diseases we
get from eating the stuff. Sounds like a sure thing for the financial security of
Monsanto. Funny how they’re trying to sell us on the benefits that we’ll accrue. I’m just
not seeing it.

So you’d like to be prudent, adopt a wait-and-see-because-I'm-not-a-lab-rat approach, avoid GMOs until you know that they’re safe? Well . . . good luck with that one. It's not as easy as you would immediately expect. You see, they’re not necessarily labeled as such. Some producers will label their product as not containing GMOs, and USDA Organic-labeled food doesn't use GMOs. That’s about as close as you can get. There is a shopping guide put together by the True Food Network (see links at left) if you’re interested in avoiding these GMOs. I’m truly alarmed that these new products of questionable safety have entered our market so quietly, so nonchalantly. But maybe I’m just easily alarmed.

Or maybe it’s that there’s much that’s alarming.

Is it just me, or is this entire patented food product a really scary concept?

No, I’m afraid it’s not just me. Farmers were scared right off of the farms. This one
strikes close to home to me. Years back, my sister and her husband were crop farmers.
Now they don't grow crops.  And that’s sad, because I kinda liked the notion of my food grown lovingly by a human being whose family tilled this very land since the Civil War or so. Is that hokey?

With my law background, there’s one particular aspect to the food industry that’s
especially perplexing and offensive to me. But first, I want to backtrack to the quote
I started with today. Remember those three stages of truth? Right now we are in
Schopenhauer’s first stage of truth - the ridicule stage. Talk to anyone about the
questionable food habits of Americans and unless you’re talking about obesity, you’ll
get some pretty strange looks. And eye rolls. But we are quickly approaching
the second, the “violent opposition” phase - and the food disparagement
laws are evidence of that.

In "Food, Inc.," you’ll hear about the most famous example of food disparagement litigation. 
Remember when Oprah was slapped with a lawsuit, after a few offhand comments
made on her show during the mad cow disease scare? The Texas Cattlemen took her
to court over those remarks and while she prevailed in the end, it required six years’
effort. And expense. What’s odd about these laws is that . . . they’re unnecessary and
redundant.

Most states already prohibit the tortious interference with another’s
business interests and the libel and slander of a business or its product. Libel and
slander generally require the plaintiff to prove that the defendant made knowingly false
statements. The defendant responds to the complaint with evidence that the statements
were true (if they were made, that is.) These aren’t new ideas - they’re rather arcane,
actually, going back to the days when one couldn’t insult a woman’s purity without being
challenged to a duel. So why do we need food disparagement laws?

Never doubt the power of money to corrupt. What we have here is a powerful lobby’s
influence in creating an entirely new standard of proof for an old tort. It’s easier
for the plaintiff to prove his case now because the definition of “knowingly false” is
defined as “not supported by reliable scientific data.” Think about that one. The
industries have all of the data! Our government encourages them to produce it. The
defendant can present his own data, but industry will always have bigger guns (and more
money to litigate these claims to their conclusion.) So the data, even at its collection
stage, is created to advance the industry’s interests - it’s skewed to promote the product
and deflect liability. (Think BP and the Gulf oil spill. Who did the research? BP. That’s
how it’s done.) These laws have a chilling effect on the free flow of information. So
much for the free market.

I hope we’ll get a different point of view from the farmers out there. As with most
things, there are two sides to the story, and I assume there are examples in which the law
brought someone somewhere some much-needed justice (and damages.) However, I’m
mostly curious to know why traditional tort law couldn’t handle these cases.

So what does ANY of this have to do with kids and their diseases? Well . . . Kids are
more vulnerable to toxicity. Kids are more vulnerable to nutritional deficiency. Their
bodies at critical stages of development are probably at a greater risk than adult bodies
are with regard to any unforeseen problems that GMO foods might bring. Eastern
medicine promotes the idea that the condition of the “soil” (the body) is the
key to whether a “seed” (disease) will take root. If this concept holds one
grain of truth, then all of this matters, and matters very much. What we eat
matters more than we seem to grasp. And we don’t even know how bad what we’re eating really is.

You may have guessed already that I am a huge fan of Michael Pollan. His books
changed everything I think about food (his and Alicia Silverstone’s, although I am not
vegan) even before I came across the movie we’ve been talking about. Even with
his breathtaking knowledge of food, he offers the most simple of advice: at the end
of his book, In Defense of Food , he suggests that we should all just eat more
vegetables. Period. We shouldn‘t get caught up in the magical properties of the
superfood of the moment, especially considering how often we’ve fallen for it only
to find out later that they were mistaken. (He offers margarine and trans fats by way
of example.) He prefers organic food but says a traditionally-farmed apple can beat up
a Hostess apple pie all the way home, because even chock-full of pesticides the apple
still has plenty to offer.. I like his approach. How many of us have been turned off by
snobbery, absolutists, purists? I have no intention of ever being vegan. I grew up where
the animals in the back yard were next month's meal.  I don’t have to go vegan to change my diet for the better. Even if I only eat one veggie a day, if I wasn’t eating any before I’ve made a huge improvement. And that’s how we make the changes that will change everything.

The challenge for us is to start caring, if you haven’t already, about the quality of our food,
no matter how inconvenient that actually is. (They don’t call them “convenience foods” for
nothing, right?) Now that you know what genetically-modified crops are if you didn’t before, you call your congressmen about it. The United States has already allowed Monsanto to patent Roundup-Ready soybeans, and the trend isn’t stopping any time soon. Corn, sugar beets . . . One by one, our food staples (or at least the staples of standard processed fare) will be the property of a handful of companies. This is a revolutionary concept, and I don’t mean in a good way (unless you‘re one of those companies.)

(Is it just me or is the only food widely-researched and touted as being anti-cancer SOY? Am I wrong to be skeptical of that?  I think I remember seeing that 98% of our soybeans are from Monsanto . . .)

Here’s another thought. It’s a doomsday thought and I apologize, but still . . . has anyone
read that bananas will be extinct soon? The theory underlying this assertion is that because
everyone is raising the same kind of banana, one course of any banana blight could wipe
out what’s left of the species. And what that has to do with GMOs is that, if patents put
competitors - namely, heritage strains - out of business, then those crops are at risk as
well. You can’t control pollen. The GMOs are impregnating heritage strains.

Imagine if rice went extinct.

Did you ever hear about the study in which monarch butterflies literally dropped dead from the pollen of certain GMO corn? There’s some debate whether the study was reliable enough to mean anything. Guess I’m just not sure why we’re being fed the stuff, without our knowledge, if there’s any question whatsoever.

But wait, there’s more.

I ran across an article on genetically-modified salmon, which is - as far as I know -
the first time a living, breathing critter has been patented for food. (We didn’t eat
Dolly.) I’ve added the link here. It’s not long . . . If you don’t choose to read it, that’s okay.
If you don’t, at least recognize that the same thing that’s happened to farmers will happen to
fishermen. And we’ve crossed over a significant line once we’re not only patenting live plants
but also live animals. The slippery slope . . . The future is here, folks. And it’s kinda scary.
Here’s the link:
http://trusted.md/blog/vreni_gurd/2010/10/09/genetically_modified_salmon_on_your_dinner_table_soon#axzz1GsQDiaGZ

Paging Dr. Malcolm . . .

What ever happened to due caution? That’s what I want to know. Before we even let people eat
this stuff, certainly before we allow this stuff to drive the other genetic compositions of the stuff
into extinction - wouldn’t it be prudent to know more? Didn’t anyone read Jurassic Park? See
the movie, perhaps?

Right now the FDA and the USDA are doing very little that isn’t helpful to the industry. That
industry people hold government jobs in these departments isn’t necessarily suspect - the
government hires people with the expertise - until you see just how slanted the whole system is toward industry. The federal government is proposing significant cuts to both the FDA and USDA in the budget. Maybe someone figured out that both have gone too native, identifying so closely with the interests of the groups that they were formed to police, that they've outlived their usefulness.  Maybe someone else wants to cut them out of the game before the wake-up call
rings in. I don’t know. The reality is that it’s our responsibility. The government does not
protect us from the market forces of greed. Let the buyer beware: your food is not all
it’s cracked up to be.

This is all very overwhelming and sometimes skepticism is just easier, isn't it?  You get to sound smart and cynical and do nothing at all whatsoever. Some would call that choice a "cop-out."  But sometimes you just wish you could ignore all of this, go back to the HotPockets and the simple life.  As the parents of sick kids, you long ago abandoned the life of oblivion, didn't you?  Not by choice, but by chance.  Still . . . you do have options.  Options to improve your child's chances, and options to improve the odds for every other child that will someday inherit this earth and this system.  So . . . what can we do now, today? Every day? Well, we start with what’s very doable.

I like to think of it as having short-term and long-term goals. That way I can see progress. Think of it as a cross-county roadtrip to California, carefully planned to hit every amazing byway, natural wonder, and roadside attraction along the way.  The long-term goal is to bring truth and choice back to the supermarket. The short-term, though, is to make better choices in daily life. Every single meal is an opportunity. Even without the food budget to buy 100% organic food, there is much you can do.

Eat local. Try your farmer’s market. Ask how it’s made or how it’s grown. Not
just whether they use pesticides, but when? Before or after the fruit appears? How
often, twice or thirteen times? What kind, manure? Or a fourteen-syllable chemical
formulation that doesn’t exist anywhere in the natural world? And if you don’t have
time to go to the farmer’s market, or you don’t have much money to spend, just buy real
food. Like apples. (Wash them.)

When you buy animal products, remember that they too absorb pesticides. It’s in the food they eat and we’re all familiar with the concept that toxins accumulate at the top of the food chain. (Eagles, anyone?)(Oh, we're the eagles.)  Know what they are eating. Look for grass-fed product. (Not that I’m disparaging the other kind.) (How do local growers and organic farmers sell their products if they can’t claim that the product is superior? Wouldn’t that necessarily require some disparagement of the conventionally-grown varieties? Just sayin'.)

There is some truth to that old saying, “you are what you eat.”
“Let food be thy medicine, and thy medicine be thy food.”
This is not new stuff. It’s wise and time-honored. And it is absolutely without risk, to eat healthy
food rather than take a chance with processed substitutes. Or at least change the ratio of your
real food vs. processed food consumption. No downside. Every day is an opportunity to be kind
to yourself and your loved ones just by making better choices. While eating healthy and true
food is no guarantee against disease, it does fortify your body, come what may. We are made in a most wonderful way, to adapt and withstand and defend, to learn and remember - in return, all our bodies ask of us is that we feed them.

Preferably food.

Real food.

I encourage you to click on the link at the left side of the this page for the Center for Food Safety. On their homepage along the right margin is a box labeled “Take Action.” Spend a minute or two shipping a couple of petition signatures and emails to your representatives.

In addition, if you click on the link for Hungry for Change, you’ll see a set of tabs across the top. In the drop-down menu for “Get Involved,” you’ll see a “take action” option that will give you some simple ideas on how to implement your new information, if it’s actually new to you, or perhaps some ideas you hadn’t thought of already if you knew all of this stuff. (I like the way it reads like a checklist.)

The ideas printed on the screen as Bruce sings at the end of "Food, Inc." are pretty good, too.

That is, if you can read them through misty eyes.

A Wake-Up Story: The beginning of all we can do together

Having set forth my manifesto of sorts, I'm feeling at a bit of a loss as to where to start.  There's so much to cover.  I hope that all of us involved will remember not to view this endeavor as an abandonment of the one cause that brought us here, whether it be childhood cancer or autism or neurofibromatosis or what-have-you.  We have become experts on our kids' conditions.  There is no reason to set that aside - indeed, you must honor that hard-won knowledge and experience.   You are simply thinking realistically, choosing to view some things through a wider lens. 


Because in many ways this is the easiest part, I want to begin with toxins in the home environment.  Hopefully we are all on the same page regarding the harm that chemicals cause our developing children.  If not, please click on the Healthy Child, Healthy World widget to the left of today's blog entry and you'll be amazed at the wealth of information. 


I first learned of HCHW by accident.  Doing some post-Christmas shopping, I ran across the book named after and produced by this organization in the bargain bin.  I thought the information was good, if cursory, but honestly . . . the celebrity essays annoyed me a bit:  I don't care whether Courteney Cox Arquette can't give up her Windex and I don't want advice from Gwyneth Paltrow on how to make baby food.  I just can't begin to fathom how their parenting experience is anything close to mine, not just because I have a child with cancer but also because my lack of resources has limited my ability to do what's best for her.  I highly doubt that Gwyneth Paltrow ever denies her children anything she deems necessary to their health and survival.  Still . . . the book covered the major points and the website was actually pretty stellar.  Spend some time on it when you can:  a lot of what I want to do here is already being done there.  (For my fellow cancer parents, HCHW was started by the parents of a five-year old who died from Wilms' tumor.)


A great place to start, if you're a newbie to this topic, or even if you're a seasoned expert, is this artful video clip put together by HCHW.  It's good. 


A Wake-Up Story, by Healthy Child Healthy World


Now I'm not going to bore you with too many of my long-winded musings today because I think I've given you enough reading to do.  However, some food for thought:  as you stand in front of your mirror tonight and smooth anti-aging cream on your crow's feet, ask yourself whether you really believe that the stuff will penetrate deeply enough into your skin to do any actual good.  If you didn't believe it, or at least believe in the possibility of it, then you would never have spent your money on it.  Consider for a moment how much thought you put into what substances you slather onto your children's bodies:  shampoo with parabens, sodium laureth (or lauryl) sulfate, and fragrance, or lotions and oils with petroleum, more parabens, dyes? 


You probably worry about their diet and the air quality more than you worry about this stuff, but it's actually the one source of contamination that we have the most control over.


Some scoff.  And the truth is, we may never know whether it made a difference that we became more mindful of such banalities as shampoo ingredients.  If you are aware of the lack of oversight by the United States government, the ridiculously low number of banned ingredients vs. the ridiculously high number of ingredients banned elsewhere but not here, and the new science of epigenetics - a topic for another day - then you understand that erring on the side of caution is the prudent course.  Especially when it concerns our children and our grandchildren. 


What have I, a woman of limited resources, done to clean up my kids' bathing routine?  Simple.  I keep everything simple because my life has its share of complicated.  And the answer is:  not much.  I had switched to a brand of baby shampoo that I thought would be very safe.  It's called Method.  It has no sodium lauryl sulfate.  Unfortunately, it still has fragrance, which is a neurotoxin.  I learned just how not-so-great my purchase was by visiting http://www.cosmeticsdatabase.com/ .  Seems that Burt's Bees or California Baby would have been better choices.  Still, Method beats the classic Johnson's Baby Shampoo, probably the most popular brand out there.  I don't put lotion on my kids.  I've purchased a mister, filled it with olive oil, and used that on their damp, freshly-bathed skin.  It's a wonderful moisturizer and . . . no crappy added ingredients.  I have not yet switched to an organic conditioner; until one goes on sale or clearance, I'll simply limit its application to the ends and not let them soak in the tub with its post-rinse residue.  As for toothpaste, I use Animal Parade.  It doesn't have flouride, but it does have xylitol.  My older kids use a flouride paste on their permanent teeth.  I don't allow them to use pastes with triclosan.  Triclosan is the same antibacterial ingredient found in many hand sanitizers.  But . . . generally kids don't swallow hand sanitizers, like they do toothpaste.  Triclosan is bad news in any form, as it contributes to antibiotic resistance and destroys microorganisms at the bottom of our aquatic food chain - and it doesn't kill any more bacteria than a proper hand washing.  In typical American fashion, though, we prefer the magic pill, right?  When Rori was immunosuppressed, we used hand sanitizer.  But for everyday life, you just don't need it.  It's one of the most unnecessary toxic exposures we subject ourselves to.


If you're wondering why I shared that with you . . . I just want everyone to recognize that even a very noncommital approach can cut your child's exposure to toxins in personal care products by half or more.  It's really very easy.  So give it a go, see what you can eliminate.  (I highly recommend the olive oil.  It's also wonderful on adult skin, although you'll smell a bit like a salad.  Coconut oil is good and the smell is more subtle.)

If you're feeling very motivated, check out the petitions under the "Take Action" tab.  And consider a quick e-mail to your congressmen and women.  It's easy - just click on the following link:  https://writerep.house.gov/writerep/welcom/shtml

Don't know what to say?  You don't have to find the most compelling words.  It's more important that you just say something.  "I am your constituent, I am a voter, and I want you to vote this way." 

So go, speak.

March Forth!

It has been two and a half years since my youngest child was diagnosed with cancer.

Her official cancer journey began on September 13, 2008, on our nation’s first Childhood Cancer Awareness Day, with the words no parent ever wants to hear or could ever erase from their memory.  She was only five months old.  The days that followed were a blur of tears, surgeries, and decisions.  There is so much I could say about my daughter’s cancer experience.  But honestly, I don’t really want to go “there” here - this is not a blog about Aurora’s cancer journey.*  I have something more universal in mind.  Just bear with me for another paragraph or two, and I promise I’ll get to the point.

My daughter’s cancer diagnosis rocked my world to its core.  Things that once seemed like worthwhile beneficiaries of my limited time now seem superfluous, even extravagant.  Cancer is the eminent priority-setter, as the specter of death is a dark cloud and a bright light all at once.  Of course, I threw myself into the work - I learned all I could about my daughter’s cancer, researching causes and cures and reaching out to other parents of kids with cancer.  I looked for meaning in the happenstance and came up short - but I’ve made my peace with it, on most days, probably only because my daughter didn’t die.  But she has persistent medical problems.  Since her cancer was in her spine, she has a chronic spinal cord compression injury.  And because of her partial paralysis, she has orthopedic issues, sensory issues, and maybe others that haven’t yet come to light.  Again, I researched all I could into those things, too.  And I reached out to parents of children with those issues.  And I found that a lot of it was familiar.  Not the diagnosis, or the protocols, or the symptoms . . . but most of everything else.  But what really changed my perspective on things was my nephew’s autism diagnosis just over a year ago.

Autism was new and unfamiliar territory, but I knew all about the importance of informed choice.  So I attempted to do for my sister what I was doing for myself, which was to learn everything possible about this new disease, from status quo “standard of care” therapies to those on the cutting edge of modern science.  Theories regarding the causes of autism are ingrained in those cutting-edge therapies.  So in researching the cures, I also learned all about causes.  And that’s where I had my “Eureka!” moment.  Turns out that there’s a whole school of thought on whether autism is caused by environmental factors and whether nutritional factors can actually cure it.

Well, that sounded oddly familiar.

I kept seeing things like “oxidative stress” and “chronic inflammation.”  They were talking about autism, yet I’d seen this before in my cancer research.  It’s there in the asthma research.  Autoimmune diseases?  Ditto.  Déjà vu all over again.  I was seeing different diseases credited with similar causes and underlying conditions.  That’s when it dawned on me that childhood diseases that are not attributable to inherited conditions - and that’s most diseases - may have the same origins. 

I learned about how polluted our environment is in the context of disease.  (While Al Gore makes beautiful and persuasive arguments that awaken a longing to drive a Prius and install solar voltaic panel roofs, the big picture of our next generation’s looming health problems and diminished life expectancy brings an immediacy to the green movement that feels far more personal.)  Toxins are rampant and unregulated.  Not only are they unregulated, we are actually lulled into believing that they are regulated so we don’t even bother to educate ourselves.   Autism and cancer, I learned, are not usually inherited diseases (people often confuse “genetic” with “inherited;")  they are caused by something external.  Maybe they are caused by the same thing, and toxicity and deficiency are at the heart of their existence.  I found this theory echoed in the literature on a number of common childhood ailments. 

This all happened at the same time that I, like many cancer parents, was caught up in cancer awareness and begging for research.  I spoke to my congressman personally, I wrote letters, I signed petitions, I fund-raised, I pinned a gold ribbon to my lapel.  Lots of groups are out there, pitching their cause as the most-deserving, most-pressing potential recipient of everyone’s tax-deductible donations.  I was out there, doing that.  But the donations are limited, and how do you convince someone that the child with cancer is more deserving of a cure than the child with spina bifida?  Or the kid with autism?  I just couldn’t argue anymore that childhood cancer was the only place worth one’s tax-deductible donation.  Even though I wanted, and still want, that cure.  I want it. 

But rivalry does not serve us.  I can speak for many of the cancer parents and say that we’ve expended considerable effort toward setting our case apart, extolling the singular necessity of our cause above and to the exclusion of all others.  But the point we’ve perhaps missed is that, primarily, what’s most unique about our needs is the particular brand of pharmaceutical voodoo we’re after. The rest of it is pretty universal.  (Okay, other than the fact that cancer often kills, and funding for research is lacking in part due to public misunderstanding of how much work is actually being done for kids specifically, but I’ll save that rant for another day.) We are connected by the common thread of having a sick child.  Consider not only that some of the causes are similar but also that the issues related to having any disease at all are exactly the same no matter what the disease.  And there are no groups uniting the parents on these issues.  Believe me, I’ve looked.  They don’t exist.  There are multiple groups for every single disease you can name.  There are groups dedicated to greener parenting, but they often seem more like a fashion statement than a movement.  There are groups dedicated to saving the environment, but they’re focused on trees or whales or wind farms or dependence on foreign oil - when you‘re facing your child’s illness or impending death, those things are far too remote.  Surfing the web’s sea of free association, I wondered:  where was the group for the parents of sick kids, talking about the issues that affect us all regardless of the particular flavor of sickness?  If, for example, the sick environment is making our kids sick, then why aren’t we pooling our formidable energy to curing it?  I’m not suggesting that we shouldn’t fund cures for diseases.  But I must say that to focus only on curing a disease is detrimentally one-dimensional.  Kids shouldn’t be getting cancer in the first place.  Or autism.  Or asthma. Why are they getting it?  And how do we change things so that they don’t?  What could be more important?

An umbrella organization is an association of (often related, industry-specific) institutions, who work together formally to coordinate activities or pool resources. In business, political, or other environments, one group, the umbrella organization, provides resources and often an identity to the smaller organizations.  That’s the Wikipedia definition of an umbrella group.  Can you see where I’m going with this?  We parents can come together on a number of issues that affect all our children.  Take away the name of your child’s particular disease, and stand under the umbrella of parents of children with any disease at all, and suddenly we find that we need a pretty damn big umbrella. 

Health care - it affects all parents and their sick kids.  What about healthcare reform?  It’s our preeminent issue.  The environment?  We can’t take it for granted anymore, now that those once-remote consequences have singled us out.  Our food production methods - if we are what we eat, then that explains why we’re sick.  In America, nutritional supplements are big business.  But our food . . . It’s often junk, junk consisting of more non-food ingredients than any that we would recognize as being food if we were actually paying that much attention.  Nutrition is a Flintstone’s vitamin until your kid is sick.  And then it’s so, so much more than that.  Special education?  It’s not such an entitlement (read with distaste) after you realize the implications and burden for your entire family.  When you realize that your child’s disability is the result of a random lottery in nature, when every single parent received a ticket, and you were the lucky winner by sheer chance - not lifestyle choices.  In the face of nation-wide budget cuts, education suffers; how do you advocate for your child to the exclusion of the many?  Alternative and complementary therapies - there’s a whole underground movement to bring these into the light of day but the medical establishment refuses to go there with us.  A parent who refuses standard treatment for his child battling cancer faces challenges to his parental authority – even though, in almost all cases, the standard cancer treatments are only gauged in terms of whether they can buy that child five more years of life.  Parents of autistic children are regularly ridiculed over something as simple as questioning whether their subsequent children really need to have that MMR vaccine, even though some researchers have shown convincing proof that the topic deserves a second look.  Why?  Why the dogma? 

I am no one of consequence, just a mom of a sick kid and the aunt of another sick kid.  I don’t have the answers, but I think I might be asking the right questions.  I invite you to seek answers with me, or even add a few questions of your own.  Continue to support the cause of your choice.  Just consider that outside the specific diagnosis, outside the protocol for your child’s treatment, all parents of sick kids face similar challenges and there’s a distinct possibility that the diseases themselves are linked by causal factors.  And then remember that there is strength, and political power, in numbers. 

Today is March 4^th, 2011.  I love March 4^th - the only day of the year that is also a command.  I’m not much for New Year’s resolutions.  Coming off a hectic holiday season, I often don’t enjoy the restrictions that resolutions impose.  Plus it’s winter and winter is long and it’s depressing; resolutions fall by the wayside.  But spring, or the promise of spring, always renews my hope and my resolve.

March Forth.

Consider that a group of concerned citizens - a group of loosely-bound but highly-motivated parents, together under that big umbrella -- can change the world.  “Indeed, it’s the only thing that ever has.” 

And with that in mind . . . march forth.

*For those that are interested in learning more about or following my daughter’s cancer journey, her carepage is located at www.carepages.com/carepages/AuroraLeigh.