Tuesday, November 29, 2011

Why I cannot "think pink:" anymore..

I am sure what I am about to write will offend some people.  In fact, it will outright piss people off.  But I have something to say, and if I can't say it on my own blog, where can I say it, right?
So here goes nothing:
If I see another "pink for breast cancer" piece of merchandise, I may just puke.  Ahh, that feels so much better to get off my chest.  For those of you that are already up in arms about my above statement, allow me to explain.
I do not think that breast cancer doesn't deserve awareness.  You will never hear me say that it's not a deadly, scary and tragic disease that sickens and claims the lives of way too many people.  It's not that I do not think that the people afflicted by it deserve all the best access to treatment and research available.
But the cold hard facts here are this:  according to the American Cancer Society, survival rates in breast cancer patients that are now 5 years out from diagnosis are around 89%.  That's pretty dang incredible.  Advancements in medicine have made it so that there is much more hope for breast cancer patients, and though the treatment is often long, invasive and gruesome, it's gotten more and more effective.
This, sadly, is not the case for children with Congenital Heart Defects.  Did you know that for every single dollar raised by the American Heart Association, only about one penny goes to pediatric research?  This totally blows my mind.  One in every one hundred children have a CHD.  They are the number one birth defect, and the number one cause of death in children.  Sorry to say, America, but a lot of our adult cases of heart disease have more to do with eating habits, smoking, and lack of exercise than something you were born with. 
The majority of research dollars that do get allocated to CHDs come from families that have been afflicted with one.  People struggling to pay their own medical bills, people that have lost a child to the awful CHD monster.  How can we possibly sit back and let this continue to happen?
It bothers me to my very core that breast cancer awareness is so commercialized.  Why can't childhood illnesses-like CHDs or leukemia, say, get the attention that breast cancer gets?  How much money from that pink broom you purchased actually goes to breast cancer research?  If you are that passionate about breast cancer research, don't go buy a broom.  Donate what you would've paid for that pink broom to a cause that supports breast cancer research.  Don't fuel the consumerism that has overtaken us all.
As for me, I don't need a pink can opener.  I would love to have a blue & red one, though.  Those are the colors of CHD awareness.  Bet you didn't even know that.  Or how about an orange line of pens & pencils, benefiting leukemia research?
It's time we recognized the diseases that are killing our children.  Causing them pain and awful surgeries, procedures, and treatments.  Forcing them to practically live in a hospital, missing out on what a normal child should be experiencing.  Our children deserve to have hope for a future, too.
So save the boobies, by all means! 
But while you're saving boobies, save a child too.

Thursday, November 3, 2011


I am a worrier.  Always have been, probably always will be.  Motherhood was bound to make it worse.  Throw in a coupla kids with heart problems, and I am lucky to be among the still sane of the world.
You see, cardiomyopathy is a thief.  It robs families of so much.  Things that you normally would take for granted, like sports, eating correctly, sleep habits, diet, school routine and more.  Everything changes.  Everything. 
Cardiomyopathy has made me second-guess every little thing I do.  I even find myself looking through my recollections of both girls' babyhoods and trying to figure out if I "should have" known something or should have done something different.  I know that I should not try to look back on what's already gone.  I really do.  But sometimes it cannot be helped.  For instance, when you get shown the xray of your daughter's enlarged heart.  Should she have had an echocardiogram six months ago?  Would it have made a difference?  It's not enough that it knocks you off your feet to get a diagnosis like this not once but twice.  No, the cruelty of being a worrier is that certain thoughts and ideas lodge in  your brain and don't let go no matter how hard logic and hope tries to make them leave your thoughts. 
Cardiomyopathy is the devil on my shoulder.  It pesters me, day in and day out.  It points out all the things it has done-taken appetites, restricted growth and development, enlarged hearts, caused scars and pain.  It's proud, this devil, of the havoc it has wreaked upon my life.  It's even more proud that it has attacked BOTH of my children.   It sits there in its smug existence, trying its very hardest to sap every ounce of mental and physical strength I have.  Some days it takes its toll more than others.  Today being one of those days.  I wonder sometimes how I am going to be able to do this.  To raise two children with complex needs and not lose myself along the way.  Fighting for every calorie, every inch in growth, every teeny percentage of improved heart function.  Watching my children get poked, prodded, scanned, cut and invaded.  Dosing them with medications every single day.  Having to tell them no to things that other kids are able to do.  Being the bad guy.  I want to scream sometimes.  To cry out to this awful disease to stop taking and taking and taking.  It's time for me to do some taking of my own.
I am taking charge.  I am slogging through the muck and mire and saying this:
You can make me worry.
You can make me cry.
You can make me exhausted, self-pitying, and sad.
But you cannot make me stop fighting.
If I have to drag myself through the mud on my face to get to something my kids need, so be it.  One of these days, Cardiomyopathy, I am gonna drop-kick that devil off my shoulder. 
And laugh with my children about what we have accomplished.
Consider yourself warned, you ugly rotten devil of a disease.  This is war.