March 11, 2012

I Know Why the Caged Bird Screams

by LJ Goes

It's a scream like no other.  You know something is wrong. You search for the cause.  No teeth coming in, no picky fabric irritating her skin, nothing to be afraid of.  In fact you say that over and over again. "It's okay peanut, it's okay, there's nothing to be afraid of." Your friends and family comfort you.  "He's probably just colicky.  Gassy."  You pat and pat and pat that tiny little back.  You coo and bounce, gently.  Nothing seems to stop the screaming. 

The screams eventually haunt your sleep. They chip away at your sense of self. Your family's sense of safety dissipates. You question your sanity.

During a presentation at a local school my friend (Blaze) heard these screams again - thanks to all her hard work, those days are long gone for her and her son P.  The memories came flooding back.  She barely made it to the parking lot in time to vomit. 

While out for a run, my friend  (Mama Mac) recalls encountering a mom with her screaming baby and shouting "Don't vaccinate that baby!" as she jogged passed them. 

It's that powerful - that terrifying - for those of us who know what caused it. 

"Mrs. Goes, today you will get 4 kicks to the stomach.  Looks like just below the ribs to the right.  3 blows to the left cheek.  Only 2 bites on your upper arms.  17 slaps in undetermined locations.  One bloodied lip. You'll be fine, but the iPad screen...looks like you're out another 250.00." 

"Good Morning Mrs. Goes.  Today you will receive two upper cuts to your lower right jaw.  Four head butts.  9 slaps to your calves and thighs.  One glass Pellegrino water bottle hurled at your face.  You'll be fine, but cleaning up the glass will be time consuming.  In the meantime, clean folded laundry will be thrown, your youngest will be slapped, and the Epsom salt will be tossed around your bathroom until the tile is no longer visible.  Only one direct hit to your stomach.  6 bites."

I'd accept either daily scenario readily and repeatedly if it meant an end to the screaming.  

The screaming puts the burden on me.  Is it the mito?  The yeast? Did he get some food he's not supposed to have? His eyes are dilated, he's tearing at his stomach and ripping off his clothes. Is it the PANDAS? Which one of the many systems that don't work is presently causing him the most discomfort? It's up to me to figure it out. It's up to me to take away the pain. I'm mom.  

The hitting, the violence...I'm just the recipient in that deal.  No responsibility on my end.  Plus, I've gotten used to it.  I haven't gotten used to the screaming. 

 I will never, ever get used to the screaming. 

The doctors say,  "Ignore that behavior Mrs. Goes.  If you pay any attention to him you are just re-enforcing it."  I immediately imagine a child  pinned under a car. I can see his body flailing and there's blood everywhere.  

Just ignore it.  

"That's just how it is with some kids.  They scream for no reason.  The spectrum."  More wisdom from the white coats.  They mumble something esoteric and irrelevant  that does not apply to my child.   It's hard for them to understand that all kids are not the same.  They absolutely positively must believe all kids are the same.  This is how current "preventative" medical science works. Someone who weights 5 lbs is the same as someone who weighs 230.  Someone raised in the inner city is the same as someone raised in rural Kansas.  Someone with a history of allergies, asthma and auto-immune disease is the same as someone without. Same.  No testing required.  Just shoot 'em up.  We'll find out if there's going to be a reaction soon enough.  And then we'll pretend it didn't happen.

I would scream too.
Our kids dwell in cages and the people who caused their imprisonment refuse to acknowledge they still exist. They live in bodies that are rebelling against them every second of the day.  My friends and I are running around them with a box full of band-aids. One for the intestinal dysbiois, one for the mitochondrial disease, one for the auto-immune damage, one for the methylation failure, one for the macrophagic myofasciitis sydrome, one for the metabolic dysfunction, one for the central nervous system damage.

We can't seem to properly apply all the bandages through the bars of the cage, though.  Some stick. Some fall off.  A lot of our little birds end up bleeding out, innocent little victims of iatrogenic illness. I've never heard of a person being burned alive who just silently sat back and allowed it to happen.  My son actually has a condition that at times causes his feet to feel like they are burning.  He's deficient in malic acid and B2.  No doctor told me.  My friends with master's degrees and sick kids...they told me.  Granny Smith apple full of the stuff really helps.  But then there's the cerebral folate deficiency...he can't handle phenols.  Don't get me started on the damage to his Krebb's Cycle! 

Let me stop you right here and I sound like an idiot to you?  Because, anytime my friends and I are given a platform to speak about our screaming children we are told we are passionate.  Emotional.  Understandably connected to the issue.  This really bothers me because, well, an overwhelming body of scientific evidence indicates our kids have every reason to scream.  They are medically ill. Profoundly, medically ill.  And their illness was caused by their physicians.  Physicians who say we should ignore their screams, like they ignore their pain.  

You'll have to excuse me.  Now I have to go scream.  Because some days when I put it all together like I did for you here, just now, it's too much to for me to take.  SOMEBODY HAS TO DO SOMETHING TO STOP THE MINDLESS IATROGENIC DESTRUCTION OF CHILDREN NOW!!  Do something.  If your child is one of the 54% of chronically ill kids that inhabit this country, it is YOUR DUTY to educate yourself.  Go to to learn more. 

Much Respect, The Rev (LJ Goes)

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