Thursday, May 26, 2011

Suckerpunched by the "R" word

August 12, 2010  ~  Romeo, Cal, Lola, Me (holy brown hair!), & Claire  ~  a few weeks after "the incident"
This story, this day, these raw emotions have haunted me for ten months... they have shut me down more than I'd like to admit... broken my heart time and time again.  But I need to share this.  And I know that we have all grown as a result of having experienced this, no matter how painful it was.  And I hope that you can learn from it, too.

I think part of the reason I have struggled with writing this is because it evokes so much anger and disappointment and intense sadness within my soul.  And because it hits so close to home.  And because it involves my kids, each of whom are *SO* important to me  ~  such an extension of my own heart.  And because it hits me below the belt with my OWN issues, experiences, and triggers in this life. 

The reason it hurts so much is because Cal said the word "retard."

There are NO WORDS for how this made me feel... how to react, respond... whether to lash out or protect... to punish or to cry... scream or run away.

I think the reason it's NOW OK to tell this story is because you all sort of "know" Cal at this point.  You know what his sisters mean to him.  You know his intense love for them.  You know how intelligent, caring, sweet, and giving he is.  You know that his heart is pure and full of love.  And now you know that he is human, too.

Let me tell you more...

It was last summer, and we had spent the evening with friends.  I heard one of the kids (not Cal) call someone a "retard."  Now, if you know me, you know that this word is probably my least favorite word in the English language.  (I LOVE the F word, I am crazy-proud of Cal for inventing his own curse word at age 2-3 (Dode!  This is freakin' GENIUS!!!), and though I despise the C word, it doesn't set me off like the R word does.)  It takes a LOT to offend me, and I have one of the biggest potty mouths I know, but this simple word -- retard (or retarded) -- evokes a shitstorm within me of epic proportions.  It didn't used to... and if you ask any of my friends from middle or high school, you'll discover that I frequently used these words then.  It meant NOTHING to me at that time.  I joked about "the short bus" and "tards" and other unmentionable things, so I too was not perfect.  I am ashamed that I used to say those things.  Yet it took me giving birth and life to Claire & Lola to see how derogatory these words truly were.  NEVER EVEN CROSSED MY MIND -- and NO ONE told me this was not acceptable.  I wish I knew.

Hell, a few months after Claire was born, I was driving in a Dillon's parking lot on a cold winter day when I spotted some harmless Knights of Columbus workers wearing vests which read, "HELP RETARDED CHILDREN" on the back and collecting money for their organization.  You'd shit your pants if you saw how fast I jerked my car into PARK (delaying several cars behind me and coming toward me), hopped out of it, and jump-straddled some poor guy's ass for wearing such an insulting slogan on the back of his vest, as if HE himself was the one who designed the damn thing with hate in his heart.  OMG!  I shouted, "I AM THE PARENT OF A QUOTE RETARDED CHILD END QUOTE AND I DO NOT APPRECIATE YOU WEARING SUCH AN OUTDATED, RUDE, INAPPROPRIATE VEST!!!  The PROPER terminology is 'special needs' these days!!!!!!!!!!!"  Dude stood there speechless then said, "I'll pass that on.  Thanks."  I stormed off, got in my car, parked it, and bawled my eyes out for my sweet Claire, for her disability, for myself, for my family and how CHANGED our lives would now be forever -- whether she lived or died.  It was so NEW... the "wound" so fresh.  THIS KILLED ME.  I will say, the next year I saw these guys out again, and they had on new vests which read, "HELP HANDICAPPED CHILDREN."  For some reason, that actually felt BETTER to me.  I stayed in my car this time and after much deliberation convinced myself I had indeed WON.  Yes, I DO have issues.  :) 

OK, so back to the story.  The word "retard" is thrown around, I f'ing FREAK OUT, race over to the person who said it (whom I ADORE!!!!!) and without even thinking, I UNLOAD... "YOU WILL NOT use the word 'retard' EVER AGAIN!!!  Do you know how hurtful that word is to me -- to Claire and Lola?  Do you even know what it means?????"  "Ummm, no.  I don't know what it means.  I only said it because HE DID (and she points to our beloved son, Cal)."

I almost don't even know how to proceed writing the rest of this blog post at this point.  My emotions are all flooding back... I don't want you to think less of Cal!!!  And let me say, it has taken me several months to convince him that telling his story will help SO many people.  That no one is going to hate him.  That disappointments DO happen and lessons can be learned and people can make choices to do things differently because NOW THEY KNOW.  They've been taught.  They too have grown.  He is still hesitant but tells me it's now OK to share it.  But it brought back all the emotions for him, too... I promised him I would not post this without him reading it and approving of it, and let's just say, it was painful for ALL of us.

The second the finger was pointed, he looked at me, then at Scott, and he immediately threw his head down in his lap and BAWLED -- harder than I've ever seen him bawl -- for a good 20-30 minutes.  Things such as, "I wasn't thinking!" and "I am DUMB!!!!!" were shouted... more tears... "I AM SOOOOOO SORRY!"... SO MUCH ANGER inside of me now... HOW COULD HE???  I remember yelling, "It feels like you just punched me in the stomach!!!" and he cried even harder.  My sweet boy!  How could he disrespect Claire and Lola like that?!?!?!  He loves them SO MUCH!!!!!

We rode home the next 20 minutes in silence after that.  So many things swirled through my head.  We had talked to Cal SO MANY TIMES about this word, what it meant, how it was slang and hurtful and if he *EVER* heard someone call his sisters "retards," he had our permission to KNOCK THEM THE F OUT!!!  (HA!)  Heck, just about 10 days prior we'd discussed this word & how awful it was -- the equivalent of a racial slur, which were COMPLETELY unacceptable to use under ANY circumstances.  So WHY THEN?  WHY would he say that at all knowing his parents provide constant, loving total care for two "retarded" children 24/7/365, these are his only siblings, he loves them with EVERY FIBER IN HIS BEING, he KNOWS what their lives mean, he KNOWS their prognoses stated that they might not live to be 1 year old and HE was the one who said, "I don't care, Mom, I just want to know them!!!!!!!!  For however long we are meant to!"  This is the SAME CHILD who asked me why I was doing genetic testing on the girls.  I told him I was partly doing it FOR HIM so that someday maybe he and his future wife might not have a child with special needs and he said, "Mom, I wouldn't care if I had a baby like Claire and Lola.  I love my sisters as they are.  I would still be lucky."   

Scott and I had a VERY loooooooooong talk about the whole ordeal, what Cal's punishment should be, and why our son would EVER do such a thing.  We decided that his punishment would be this:  He would have to call each of the other three children involved, apologize for using the word "retard" and explain to them why it is wrong and why no one should ever say it again.  Secondly, he would write Scott & me a letter about his own thoughts, feelings and what he had learned -- about his sisters, using that word, why it's inappropriate, why he won't do it again, how sorry he is, etc.  It needed to be at least one notebook page in length. 

We also discussed the situation more in depth, and again, Cal was extremely remorseful, crying through most of our discussion.  Again and again he said he didn't think of his sisters as "retarded" at all.  He didn't associate using that word with THEM.  I reminded him that this wasn't just an insult to Claire and Lola but to ALL the beautiful, amazing children we knew who happened to have special needs, who were "differently abled," who have "intellectual disabilities," who sport souped-up genes.  These kiddos have done nothing but provide LOVE to us, their hearts are pure and innocent, and they are counting on US to be their voices, have their backs, and return nothing but love.  Cal got it.  He got it so much that THIS is the beautiful, tearjerker of a letter I got in return:  (please click on it to see it full sized)


Again, NO WORDS for what this meant to me then and will ALWAYS mean to me.  In the end, I KNOW it's "just a word," but it's a word I hope to help eradicate from the English language through my incredible, awe-inspiring son, Cal.  I want to point out that after reading this blog post (prior to me posting it), Cal was visibly upset.  He felt disappointed in himself, wished he had never uttered that word, and we spent some time discussing how this experience shaped him and made him into the individual he is today.  His one comment to me was, "Mom, I haven't been correcting people who use that word enough.  I need to do that more.  It's just SO HARD."  Scott & I agree completely.  That will be our mission... together.  We are hoping this blog post will help to encourage people to think more about the power of their words and the impact they have on others.

I thank you deeply for allowing me to share this with the world, Cal.  You are helping to change lives with your words and actions.  I love you more than you could ever know, and I AM SO PROUD OF YOU, Son.
Visit the following links to learn more, sign a pledge, become an advocate, and/or take action:  (forgive me if I missed any websites...)

Spread the word to end the word. 

The Social Challenge

When you say "retard," someone hurts.

R word counter

The R word store

xoxo

Tuesday, May 24, 2011

"R" word PSA televised tonight



This makes me SO PROUD.  Hoping to share a more personal experience with the "R" word later this week. 

xoxo

Thursday, May 19, 2011

It's everywhere!


OK, so this cartoon ran in our local newspaper's "Funnies" recently.  As a parent of two microcephalic children, I'm *ALMOST* not finding it funny, but then again, it takes an AWFUL LOT to offend me, so I'm chalking this up to a suuuuuper distorted version of Microcephaly Awareness.  HA! 

Thoughts?  Discuss amongst yourselves...

FUNNY OR NOT?????

Wednesday, May 18, 2011

Micro-Managing!

A few weeks ago, we were able to get together with our friends, Angelina, Jesse & Anika.  Even though they live nearby, we are both so busy that we're unable to get together very often, but we always have SO much fun together!  Anika has microcephaly like Claire & Lola, and she will turn 2 years old in July.  I was honored and SO excited to meet their dear family about a year ago because it's not often I find other families who have children similar to our girls (let alone 20 minutes away!).  Anika ROCKS. MY.  WORLD.  Honestly... she is AMAAAAAAZING, THE most adorable little girl (no offense, C & L!  KIDDING!!!!!), and simply BRILLIANT.  I watch her in awe, delight in her accomplishments, and celebrate with Angelina & Jesse in all she is able to do...which is an awful lot!!! 

Anika can stand SO WELL!  She has really gotten the hang of it since I saw her last!

Grasping a toy!  And then...

...transferring that toy to the other hand!  This child is GIFTED!  OMG!


Gotta touch my girl!   Heart.  Warm.  xo

Holding Claire's hand... <3

My girl is HAPPY.

Anika is a freakin' rock star in her gait trainer!  She was all over our living & dining rooms, even figuring out how to turn around at one point!  I DO hope Jesse got those protective pads on the front of that bad boy though... Anika tends to use it like a battering ram.  LOL
Lovies for Mrs. Pocket!!!   (Sorry about the camera angle, Angelina...my bad!  Though the guys will probably thank me!!!  LOL)

Polly Ann feels like a giant here.  :)

Anika was all up in Pocket's personal space!


(ignore Polly Ann's random glowing left Terminator eye... it is freakin' me the hell OUT!)  And sorry for the Arnold reference.  He's now on my shit list.

Micro Posse

MELTDOWN HAS OCCURRED!!!!  Anika's "fits" were hysterical!  She'd just go limp, fall backwards & then cry... not as funny to Angelina & Jesse, but Scott & I were laughing our asses off!  It is just SO COOL that she can have a fit and show her true emotions and frustration!!!

SO.  FREAKIN'.  LOST.  in her eyes... OMFG.  Cal loves Anika!!!  He just kept telling me, "Mom, she is SO CUTE!!!!!!"

Lola was a perfect angel for Jesse... and I TOTALLY could've used  him yesterday morning around 6:37 am-ish as Pocket had not gone to sleep yet, dammit.  Hence the fragmented thoughts & disjointed writing  ~  sleep deprivation is a BITCH!  I blame Polly Ann.  She was in dwarf time out.  Like for the WHOLE DAY yesterday!!!!!  (kidding... sort of.  :)

I LOVE HER!   xo
The first time I met Anika a year ago, I remember telling Scott, "WOW... she can do SO MUCH.  I wish our girls were able to do what she can do..."  And for a split second, I'm almost ashamed to admit, I WAS JEALOUS.  And, for the love of God, what kind of parent is JEALOUS of another special needs child's abilities?!?!?  (PUH-LEEEEASE tell me that is normal!)  WHY HAVE I at times wished my girls had Down Syndrome or "just CP" instead?!?!  Because I am a real hot mess mostly.  But also because I'm a mom who wants to optimize my kids' lives in whatever way I can...even though being able to DO MORE doesn't necessarily equal more happiness, though in my warped mind in the beginning, IT DID (run-on sentence much!?  DANG!).  In my defense (HA!), I mostly felt that way when Claire was quite young, as I was just a rookie in this new life.  I cannot tell you the number of playgroups I attended during her first year where I was repeatedly asked, "HOW OLD IS SHE AGAIN??? Ohhhhh, she's ONE... OK..." followed by then getting ignored by said bitchy mother(s).  There are no words for how much that hurt me then when I needed the support the most.  Just tell me she's beautiful & perfect & you cannot wait to follow her (hopefully) long, amazing life & LET'S MOVE THE F ON!!!!!!!!!!  :)

In addition, every "loss" (having to repeatedly hear, "She won't walk, she won't talk, she probably won't live to be 1, she is blind," yadda yadda yadda...) was just one more crushing blow, and I SO wanted to cling to every last "normal" thing I could, mostly for ME, selfishly.  Though sometimes even now when I'm tired or hormonal (f'in' PMS!) or pissy or super stressed or deprived (LOL), those jealous feelings occasionally return... and usually I know that is when I need to look inward at myself, not at what the girls are somehow "lacking."  In those quiet, peaceful, meditative moments, I focus on how PERFECT Claire & Lola STILL ARE, limited or not.  I don't need them to walk to bring me joy... ditto talk, crawl, sit unassisted, smile, see, etc.

All that being said, YES, I DO occasionally wish sometimes that Claire & Lola were able to do some of those things.  It would certainly be mind-blowing to see them walk in a walker or use their hands deliberately or smile in response to things I do or say... and I think that makes me appreciate kids who CAN do those things that much more.  Hence, Anika having my heart COMPLETELY!  But also, I know that my girls don't have to DO ANYTHING or ACCOMPLISH SOMETHING BIG (developmentally) for them to impact the world around them with their sweet spirits.  I already love them with every fiber of my being  ~  that happened as soon as I found out I was pregnant with them, and it grew a million-fold once I realized their genes were even more unique than most.

Everyone has their "thing," we have decided.  With each diagnosis comes struggles, difficulties, things to watch for, concerns, fears, and disappointments.  With further cognition comes more painful understanding vs. my girls who won't ever be able to respond appropriately to someone making fun of them or hurting them, not to mention possibly not even being capable of comprehending that type of pain.  Walking and mobility (while f'ing UNBELIEVABLE to me) brings increased independence with associated risks (tumbling down stairs, running into traffic, parents basically being on "suicide watch" all day!) vs. my girls who basically stay put where I lay them (aside from Lola's bed base jumping escapades... Grrrrrrrr.....!).  I could go on and on about the advantages and disadvantages of each scenario, but suffice it to say, we are all given EXACTLY the child(ren) we were meant to experience in this life.  I personally do not believe it was an accident or a mistake that I was blessed with TWO profoundly affected daughters and one amazingly gifted son.  Perfection... all three of them. 

And to those well-meaning-but-clueless people who STILL continue to say to us frequently, "THANK GOD you have Cal..."  Ummm, you guys can SUCK IT.  Thank God we have Claire and Lola, too.  They COMPLETED our family in a way I cannot explain.   I have always loved the Garrison Keillor quote in my blog's side margin which states: 

“Some luck lies in not getting what you thought you wanted but getting what you have, which once you have got it you may be smart enough to see is what you would have wanted had you known.” 

I could not agree more.

xo

Monday, May 16, 2011

Blogger Issues

For some horseshit reason, many of the pictures on my blog aren't showing up on posts dating back as far as April 28, 2011.  I am in touch with Blogger about getting this resolved ASAP.  THANKS for your patience!!!!!!!

xo G.

Friday, May 13, 2011

As promised...

A few weeks ago, I mentioned a "first" for Lola... her first french braid EVER!  (Yes, at age 5.  :)  Hey, my girl's hair is FINE!!!  Like her mother's, dammit.)  It was damn near impossible to finagle, as I was working with mere strands of hair in each gather, but I somehow managed to pull THIS off...
    
My hand holding her braid, as a size reference.  And no, that's NOT the guy's hand below... HA!  (I love The Far Side!)
I remember my Dad showed this cartoon to my 6th grade basketball team years ago... we thought it was hilarious -- and I still do!!! 
OK, so I was all excited, because you know how when you have your hair french braided and then take it out, it's all wavy and pretty?!?!?  I was hoping for VOLUME!  Curls!  Lola's head to look BIG(ger)!  To not see her scalp!  Ummm...
EPIC
FAIL!!!
Oh well, I tried.  :)  Lolita has my heart... I am *SO* in love with this child.  OMG.
Doing PT with our beloved therapist, Donna... who is totally FAMILY to us now.  xo
Rear view... hahahahahahaha!  Cracks me UP!
Art project done with our OT, Shelly ~ she always does the coolest things with our girls!
Why yes... YES IT IS.  Love you, Polly Ann.  xo
 Side note, ummm, how cute are Cal & Kaitlyn?!  OMG!

My girl, Claire has been ON FIIIII-YAHHHH lately during PT!  Donna and I both are in awe of how much she is changing.  Check it ouuuuut (said in my best Fergie voice!)...
Ignore the bed head & the fact she is partially asleep  ~  My girl is pushing up on her arms in her beanbag!!!!!!  (Oh, and those are her purple thumb splints on her arms/hands... but we affectionately call them her sparring gloves.  :) 

Let me sleep FOR THE LOVE OF GOD!!!!!!!! (said in Claire's best Tommy Boy voice!)  But OMG -- how awesome is she doing?!??!!?!?  WOOHOOOOO!
Once again, sleeping during therapy, but sitting up SO straight & beautiful!!!  YEAH BUGGY!
Flashing gang signs even amidst sleep... that's my girl.  :)  WSD (West Siiiiiiiiiiide Dwarves), yo.
I cannot believe how far Claire has come in her almost-10 years!  It truly is mind-blowing, and I am SO proud of her in all she does.  Last night I told her she was my favorite... and she sort of is.  :)  Course, tomorrow I will tell Cal the same thing... and Lola the next day!  They truly complete my life in a way I never expected before motherhood.

On a different note, my dear friend Jennifer lost her husband last week.  Bob, The Sofa King, will be DEEPLY MISSED.
  Cheers to you, Bob... the world was Sofa King blessed to have you in it.  xo
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