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 thought that I came from strong stock, that my healthy babies were a result of my rock-solid immunities and my good health, and then Aurora came along and that idea went out the window.  The first of many ideas that sort of went out the window, I guess.  I don't know what went wrong.   (And God knows, if I try to figure it out people assume I'm still in some sort of denial rather than possessing an intellectual curiosity.)  I don't know that I'll ever know what went wrong, and I'll certainly never be able to prove it even if I think I've figured it out. 

As with many things, there's a bright side mixed up in every dark side with a silver lining in the middle.  The cancer diagnosis knocked the air right out of me, but since I'd already been knocked to the ground by the doctor's consequential conclusions, the fall was perhaps just a little bit softer for me . . . it's hard to say for sure, because my daughter did not die, as I thought she was going to in the first days after hearing the diagnosis.  Being delivered into the hands of these exceedingly knowledgeable and gentle doctors, though - I couldn't have wished for better.  They called the other doctor for me, and they handled the child protective services people for me, and they delivered their messages with a smattering of disdain.  I was informed that Dr. Ionas cried when she heard the news.  I remember thinking, perhaps a bit too understatedly under the circumstances:  "Well, that's appropriate." 

I hope that it haunts her. 

I have not forgiven; I have tucked my anger into a drawer and I take it out from time to time and look at it, then I carefully put it away again because life goes on.  I don't want to dwell there, because I have too many good things in my life to get stuck there.  Too much to do.  But she is not forgiven.  I hope she has tempered her practice to account for her own fallibility. 

I don't think I'll ever be the same for this experience.  Whether yours was similar, I bet we share something in common, or at least most of us do:  we never thought it would happen to us.  But it did.  If you're one of those who's been able to get back to life as it existed "before," I'm not sure whether that's a good thing or a bad thing; maybe it's a little of both.  But congratulations.  I don't know how much time you've spent wondering about the hows and the whys.  I know that I have lost more than a few nights' sleep over it.  No one should have to go through this.  No one.  And I had the easy part:  my baby is the one who has cancer and a permanent physical disability as a result of it.

She's a survivor.

As for me . . . well, I just don't know yet.  A little battle-scarred, but I'm here.

As you all well know, I've devoted a significant amount of time to the pursuit of causation and arrived at the conclusion that it's our environment that's responsible for the increase in disease incidence.  The science continues to jump onto this bandwagon.  And while the naysayers "debunk," or so that's what they call it, the overwhelming evidence is that, hey, we can't say with medical or scientific certainty that any one substance is to blame for any particular case, but we can say emphatically that it's the environment, stupid.  (To paraphrase a popular political slogan from the past.  Not really calling anyone here stupid, just so we're clear.)

Keep burying that head a little deeper in the sand if you disagree. 

The American Academy of Pediatrics released a statement -- after its annual meeting last month -- that it's time to overhaul the Toxic Substances Control Act of 1976:  the TSCA's existing content simply does not address the current knowledge of how environmental toxins impact children and babies, even in utero, so much more strongly than they do adults.  Remember S. 847?  It's the Safe Chemicals Act and it calls for changes that address this very problem.

Call your senators, and ask them to support S. 847.  Pretty please.

But in addition to asking our senators to support this law, we're going to have to dig a little deeper and question our own deeply-held beliefs, not just on whether toxins cause disease or organic is better or disease is on the rise - deeper still.  Consider just for a moment or two where we came up with that notion of big government being bad.  Think like a lawyer, or a philosopher maybe . . . and follow your own thoughts through to their conclusion; it's easy to cling to a notion without ever having defending its value even in your own mind. 

Question it. 

Why is it bad for government to protect people?  Is it the size of the government, or the fact that it's so inaccessible?  Or that some of our representatives seem corrupt or at least very out of touch with the rest of us?  Or that you don't believe in handouts?  What is it, specifically?  Because government is big, that's true.  But it does perform some pretty important roles in our lives, things that we probably take for granted.  Are the police and fire departments on their way out next? 

In the early days of America, corporations were considered an evil comparable to monarchies.  Today, we accept their enormous influence and power as a fair tradeoff for the gifts they bring us, even as we complain that the government has run amok.  Privatization is all the rage, as we try to tame the size of our government, but at what price?  If the corporation exists only to make a profit, why would we presume greater results from the corporation?  Is money the only measure of value in our minds?

No.  No, it is not.  Not for some of us, anyway.  Not if you have a sick kid.

Is it, possibly, that we don't trust a big government because it seems to work less and less for us?

But I may have digressed just a little bit.

Fighting this fight, each and every one of us will have to rethink our politics, our personal values;  party identity won't get us where we want to go.  The "green" lobbies can't do it for us any more than the "oil" lobbies can.  The solution is for us to follow the fray, and jump in wherever it's warranted, and not behind the banner of some special interest group, at least not unless we're certain that the group truly represents our views.  Can a Republican support the Affordable Health Care Act?  I don't know.  I'm not a Republican.  But can a parent who's lost their job and attendant benefits as he's spent days upon days in the hospital with his ailing son whose lifetime insurance caps have been long met not support it?  Does it really matter whether he considers himself red or blue?

I am not ashamed to admit that as full of "principles" as I am, or am trying to become, I'd sacrifice every single one of them before I'd sacrifice my child's needs.

It's that bear thing.

Think it over.  Political will can move mountains.  Whose side are you on?

Spring is a time of renewal.  A time of change.  For some of us, it can be a time to nurture a few foreign ideas, just try them out a little bit - question status quo as it stands in our own beliefs.  A time to plant a tiny seed that may transform the way we think about awareness and cures and prevention of all childhood diseases.  These are not ideas separate from politics. 

They are the reason that politics matters.