Thursday, February 23, 2012

The 2% Can Suck It

To say that the last week has been turbulent would be a friggin' understatement.  It was packed with some pretty high highs & some pretty low lows, but we are leveling back out now finally.  And for that, I am soooooo grateful.

I don't like to go into details about all that is "wrong" with my girls for many reasons.  First of all, we spend probably 98% of our lives not really dwelling on that shit.  It brings us down, it makes the focus of our lives feel very negative, and honestly, we don't feel that is good for our family in ANY WAY.  It's not living, in our opinion.  WE CHOOSE TO BE HAPPY.
But I'll be damned if that 2% doesn't knock me square on my ass sometimes. It takes me back to the day of Claire's birth, to her many diagnoses days (with each doctor's prognosis growing progressively worse), to that fateful day when Claire was 3 and we almost lost her, to the shakiness/teeth-chattering/cold-feeling that consumes my body when I step into doctors' offices or hospitals (fear?), to the day we found out we were having our second affected child, to the complete terror/fear/heartbreak/anger/intense sadness/worry/etc. that flooded me at each of these times in my life. These moments hit me out of the blue.  I can be getting into the shower in a great mood & find myself sobbing halfway through for things I am POSITIVE I already dealt with & moved beyond long ago. I wish I knew what brought on these feelings.  PMS?  Stress?  Sleep deprivation?  Anxiety?  Hearing about other people's troubles?  I wish I knew... I try like hell to find that root cause so I can prevent that 2% from rocking my world here or there, but so far, there is just no rhyme or reason, no warning, no way to avoid this.  I think I'm just meant to feel these emotions... to work through them... to learn from them... to maybe help others realize they're not alone.  I don't know.  But this past weekend it happened again, and it was not pretty.

What made it even worse was that Scott was out of town for 5 loooong days/nights for business.  And I had PMS.  And I had just completed a 10-day detox recently & I was still grasping for things that I could/should eat as I reintroduced foods.  And both girls were sick with colds and/or ear infections.  And their track records precede them with shitty behavior while Daddy is gone, and maybe I put "The Secret" into practice a bit much by worrying they WOULD be bad?!??!  Suffice it to say stress levels were runnin' high, and that could not have friggin' helped.

Night 1 began with the dwarves not tapping out till 45 minutes before I had to get up for the day.  Yes, you read that correctly; my brats girls only let me sleep for FORTY-FIVE MINUTES the first night Scott was out of town.  WTF?  I was in straight-up survival mode that next day... pissed as hell at the entire situation, frustrated that I was having to deal with it alone, horrified at Lola's inability to eat well due to a cold/ear infection/jaw popping, and scared that Claire was developing an infection in her g-tube site.  SERIOUSLY.  Not now.  Not while your Dad is out of town!  You both are SO in time out.  Kidding.  Sort of.

Sleep came easier the next few nights, though it remained broken due to the girls not feeling well.  Claire's g-tube was oozin' like a mofo, and I resorted to some ancient home remedies to treat it  (and I'll be damned if they didn't work pretty well!).  I continued to grow more and more concerned about Lola's inability to eat as she had before, ALMOST resorting to having my friend/neighbor (a nurse) help me put an NG tube down her nose so I could feed her.  And considering the fact that I've used an NG tube several times in the past with Lola and once before with Claire, you would think that would not bother me... but for some reason, it SO DID.  (Click here to view my 2011 Feeding Tube Awareness week video, which shows both of my girls' dependence on tubes to help sustain their lives and nourish them ideally.)

It had been several years since Lola's last need for an NG tube, and I sort of felt we were beyond that.  I'd hoped that she might never need it again, as well as she has always eaten.  I've always had the supplies on hand JUST IN CASE, but I kept them sort of hoping that if I did, I'd never need to bust 'em out & use 'em.  Leave it up to my rowdy girl to down a 4 oz. bottle (almost normally) 3 minutes before the NG tube was going to be placed.  So, we held off, and I'm happy to report that she is MUCH BETTER now and her feeds have essentially returned to her normal (knuckles sore from knocking wood). 

This life, these emotions, these situations... they are SO UNPREDICTABLE.  They catch me off-guard, they derail me, and they make everything else in my life seem so unimportant.  I realize once again that all that REALLY matters is love... the relationships which bring me joy... the precious time spent with those we care about... and laughing a whole helluva lot.  Maybe this clusterfuck experience was meant to refocus me?  To remind me?  To keep me present & grounded in this moment?

I think that wave of fear that rushed over me and brought tears to my eyes occurred because in my mind, placing the NG tube was an admission that I COULD NO LONGER FEED MY CHILD.  And I think my mind jumped to the fact that this could possible equal a permanent g-tube placement for Lola as well.  (And it didn't help that Scott was also feeling this way halfway across the country... normally we're not both having these vulnerable moments simultaneously, dammit.)  And while I deal many times daily with Claire's g-tube & have for almost 8 years, I still do NOT want to go there with Mrs. Pocket unless absolutely necessary (there truly are no words to describe how incredibly terrified I am to use anesthesia with my 10 lb. daughter who is sooooo super sensitive to even TYLENOL).  I am desperately clinging to that last "normal" baby thing we have with her (and Claire, for that matter, even though they're 5 & 10 years old).  And while I do not feel I'm clinging to it at Lola's expense (normally she eats like a pig!), I still so badly do not want her to lose the ability to DRINK A BOTTLE.  I don't want two goddamned IV poles in my bedroom, flanking our bed, thankyouverymuch!  The one shitty, teetery, Kangaroo-pump sportin', royal-blue-Ice-Age-insulated-cooler/bag/clamp-totin' pole we've got is PLENTY.  See what I mean?!
Thank God you can only see PART of this awesome set-up in all it's splendor!  Even Claire thinks it's a joke.  Any suggestions on how to accomplish the same thing & yet "beautify" that bad boy?!  It's humiliating.  And it's in *MY* bedroom!
I'm not sure why overcoming this week long minor backslide has felt like such a personal victory to me (for Lola, if that makes sense).  Like we f'ing climbed Mount Everest, fist-pumped on the peak, and descended safely back to our "normal" life.  I realize we're probably closer, stronger, wiser, blah blah blah, but DAMN that 2%.  Sometimes reality is a bitch.

All I know is that I'm HAPPY again.  And I DO feel refocused.  But after a total of 24 hours and 45 minutes of sleep in 5 nights, I'm tired as fu....... Zzzzzzzzzzzz....

"Perhaps all the dragons of our lives are princesses, who are only waiting to see us once beautiful and brave." ~ Rainer Maria Rilke


Tuesday, February 14, 2012

Random Sh*t I Love

On behalf of the big V Day (and I don't mean VASECTOMY!), I wanted to make a jovial little list of some random shit I love.  And considering I've got a DATE (!) with my sexy Valentine tonight, I better get this going...

For starters, we can get THESE dodes guys out of the way as things I effing LOVE...
How do I love thee?  Let me count the ways... a giant DORK shirt worn out to a busy bowling alley this past weekend HAS to top the list.  No really, I <3 you, babe.  SO MUCH!  Soulmates INDEED.  xo
Cali Swag (apparently this is the nickname your friends at school gave you, and I'm SOOOOO usin' it!), I am SO proud of you in all you do!  You are the best damn Flarp farter I've ever known.  You make me smile and laugh out loud EVERY.  SINGLE.  DAY. -- without fail! -- and I LOVE YOU FOR THAT!  You are my heart.  xo
Buggy Boo!  You were born to swim, m'dear.  Your body was perfectly designed for it, and you rock Speedos like nobody's business.  :)  I am so enamored by you STILL.  I cannot take my eyes off of you, and I feel so connected to you on a soul level.  There are just no words to describe it.  I am SO PROUD to call you my daughter.  xo
Mrs. Ann, what can I say but you and I are so connected... physically (my "Velcro baby!"), emotionally, and spiritually.  I have always felt like you were an extension of me.  You make sure you are always near, and your voice is ALWAYS heard!  I love that you are so spunky and you use your vomit as a deadly, forceful weapon.  You're my badass "baby," and yes, you ARE still (and always will be!) my BABY!!!!!!  Even though you are damn near 6.  xo
My 14.5 year old, Pre... this picture was taken years ago as you took over one of the kids' car seats.  You always make me smile!  You are so fiercely protective & loving of all three of our kids, and I love how you stand over Claire and let her watch you (your black body against our white ceiling -- it's almost as if you know she can see only you due to her visual impairment...).  You stand so still, and her hand will touch your legs, and you almost SMILE, you are so happy.  I love that you love your "siblings" and that you watch over them.  You were my first son, and I love you.  Green snot rockets & all!!!  xo
Mr. Hat, Capricorn, Romeo, whatever the hell your name is... I FRIGGIN' LOVE YOU!  You are ALWAYS right next to me the second I sit down to feed Lola, when I watch TV, as I work at the computer -- you are THERE.  I seriously MAY have given birth to you.  We'll have to double check DNA on that one.  I cannot call you my favorite dog because that would be mean to Prefontaine, but you might just be.  xo 
So now that we got the formalities out of the way, here's the random shit...
The Blender Bottle ~ pretty sure this is THE GREATEST invention *EVER* for mixing shit up.  Ignore my Vitamineral Green/protein powder/raw goat's milk concoction above, but let's just say, NO POWDERY RESIDUE!  It's AWESOME.  Wire whisk-like ball inside whooshes around and perfectly blends to a tee.  LOVE!  (Note:  mixing could get a bit obscene & Shake Weight-esque if you're a dude shakin' your shit... observe proper technique & form or people MIGHT stare & laugh... just FYI!)

While we're on the topic of blending stuff, I canNOT not mention the glorious Vitamix blender which brings me joy & beautiful, green smoothies on a daily basis.  Aaaahhhhh, music (and wayyyyy too many decibels to even count) to my ears!
Family game nights!  I normally lose completely dominate them all, and for that, I apologize.  I may be slightly exaggerating, unless we're talking about Scott & I vs. the rest of the entire f'ing WORLD in Pictionary.  Because I am 1000% sure we will WIN.  We're THAT GOOD.  And anyone who wants to challenge us to possibly dethrone us, it's ON.  We will DESTROY you by over half a board!!!  HA!  (Ask anyone.  It's all true.)
This trash dump I saw in Oklahoma.  BEST COMPANY NAME EVER!
Tiny heads.
I love them.  I find them ENDEARING!  They melt my heart.  Hence the reason I think Anthony Davis should win National Player of the Year (AND also because he is a phenomenal basketball player).  And let me say, I DO think that AD is probably THE HIGHEST FUNCTIONING MICROCEPHALIC I HAVE EVER SEEN!!!!!  I'm not gonna discuss his infamous unibrow at all, but I will say, he has the CUTEST, tiniest little head EVER!  Aside from my dwarves, of course, who, by the way, are in complete & total AWE of Anthony -- size-wise (dude's 6'10" and 220 lb.!), skill-wise & ability overall.  He rocks!!!!!!
Best car decal EVER!!!!!
I'm SO getting one here.  I don't even care that it's not applicable because I'm female, I NEED this on my swagger wagon!!! 
My newest obsession for the girls... Larkie Lu Bows.  Thanks, Gina!  I could drop a C-note or 3! in less than 4 minutes in your craft room.  NO LIE.  Your work is BEAUTIFUL!!!
If it's not in THX, I don't WANNA listen.  Even that 30 second clip before the movie gives me chills.  Yum!
BURP RAGS.  Yep.  I should own stock in these mofos.  And not the piddly-ass, ultra-thin, damn near transparent, dish towel-like ones shown in the pic that you have to quadruple (thus reducing their size to like 6" x 6" which leaves you basically SCREWED when Pocket refluxes up 3-4 oz. and it's your job to quickly sculpt that microscopic burp rag into a rudimentary bowl-like contraption which will ultimately catch and hold ALL OF IT) just to even make usable.  I mean those HEAVY DUTY MOTHERS -- usually the Gerber ones that are friggin' HUGE when you first buy them then shrink up after washing for maximum absorption and function.  Oh yesssss.  I'd be LOST without 18 of these per hour day.  DAMN REFLUX!  Burp rags are like my calling card when out & about, too.  If I had a dime for every time a total stranger came up to me, handed me one I've apparently dropped (probably because he/she saw the other 14 we have on us) & said, "Ummm, I think this might be yours..." -- I'd be friggin' LOADED.  Never leave home without 'em!
The Nap Nanny!  Could not live without this!  It is the FIRST thing that has allowed me to put Mrs. Pocket down at night and sleep with NO ONE in my arms (though usually only for an hour or so, but I!  WILL!  TAKE IT!!!!)  We start out together, but as soon as she becomes fussy, I try her in this, and USUALLY she digs it (unlike this stellar shot of her). 
... and so does Romeo!!!
(Go hit pause on my Playlist)
Rest in peace, Whitney... I loved your voice SO MUCH.  No one will *EVER* sing this better than you. 

List of loved items will be continued another time... but till then, have a FABULOUS rest-of-Valentine's Day!

Thursday, February 02, 2012

Knotty Girls!

Jada Pinkett Smith is a badass.  Plain & simple.  She flat-out SCARES ME, if I am being perfectly honest.  I know she's under a buck in weight & 5 ft. tall in height or some shit, but I'm 100% sure she could kick ANYONE'S ass if given the chance.  And this chick can rock Bantu knots with the best of 'em.

Jada, along with my new obsession/time-killer/love Pinterest (you can follow me here!), encouraged me to try some Bantu knots on my extremely straight-haired daughters.  After all, I wanted them to have gorgeous, spiral-y, heat-free curls the next day like this girl, yo...
Click here to learn how to create-your-own Bantu knots!  (or not... read on...)
I started my experiment on Claire since her hair is more cooperative, she has more of it, and she's down with changing her hair often (just like her Mama!).  I read & re-read the directions carefully, a bit unsure how to secure the knots, but I figured it out, and before long, my Mimi was sportin' knots like nobody's business!
Damn microcephaly only allows me to fit FOUR knots on her tiny melon, but girlfriend ROCKED them!
For 24 whole hours.
I *LOVE* your smile, Buggy Boo!
What transpired 24 hours later still remains a bit of a mystery to me.  I did it all CORRECT.  I am SURE OF IT.  I put the knots in wet, I spritzed with a little light gel/product, I secured them as well as I could, they LOOKED adorable (!), and I untwisted them just as described on the website.  I could HARDLY WAIT to see the spiral curls & see if they really did last for days & this whole process was so EASY & CUTE & it was gonna be my new go-to hair-do for Claire especially, and OMG!  Bantu knots ROCK!!!!!  My girl was gonna be precious with her curls!!!!!! 
F'in A. 

I have the sudden urge to either sing "A-B-C, easy as 1-2-3" or paint some "happy little trees."
I gave my girl a 'fro.
I immediately have flashbacks about the time in Kindergarten when I had long, sandy blonde hair similar in color to Claire's.  I remember my Mom had the same dream for my class picture day -- curls!  Although I'd never done so before, I slept overnight on those squishy pink rollers, and I could hardly wait to wake up & see my beautiful long curls!  Imagine my own horror when THIS is how my hair ended up...
"Hello, is it ME you're looking for?!?!?"
Can you find me?
Front row, 3rd from the left, purple dress, possibly smile-crying.
Complete with straight bangs & a cowlick to boot.  OMFG.
Get a load of this action up close.  That's so hott!!! (I've been reading wayyyy too many middle school texts!)
I do find it ironic though that I have my thumbs tucked into my fists.
Our girls do that ALL THE DAMN TIME (due to their high muscle tone/cerebral palsy/brain condition). Clearly only cool people do that.  And wear Elizabethan-style, white collared, poofy-shouldered, empire waisted, floral dresses.  Fan-friggin'-tastic.  Poor 5-year old me.

So yeah, I basically pink-rollered my daughter.

Now, how to fix it?  OK -- if I tame it down a bit, it will still look cute & curly.  Maybe some clips?
Aaahhhh.  MUCH better.  Channeling her inner-Diana.
Rear view -- HA!  A bit out of control, but I think it'll "fall" as the day goes on... yeah, that's it.  SURELY it'll fall.
Workin' the 1970 Instagram filter, yo.  Seemed fitting.
Day 2:  Attempt to work with what she's got.  Yes, I could give her a bath & be back to square 1, but where's the fun in that?  I'm goin' for 4 puffs, in the original knot sections.  It's gonna be SO cute.
Ummm, fail?  Got more of a Bozo the Clown feel, dammit.
Upon seeing the sheer size of Claire's 'do, Scott comments, "You know who you REALLY should do the knots on?  POCKET!"  So... I gave 'er a go...

Lola's noggin
Shrek baby?!
I found this picture both endearing & touching at the same time... love the knots, but WOW do they ever accentuate how teeny tiny Lola's head truly is.  Kind of an eye-opening moment for me.  Not to mention the skin wrinkling up on her skull due to her head/brain not growing properly.  (sigh)
While Lola's knots "cured" for 24 hours, we had some fun with Claire's mane.
She's an angry elf.  Wait, is that Carrot Top?!

I tried combing it out, as I'd not done that since I untwisted it that first day.  Ummm, poor choice...

Even Romeo had to look away... he thought he saw Phil Spector!
WTF???  Richard Simmons would be proud... but he'd definitely recommend some sequined shorts.
Ready to ease on down, ease on down the rooooooad!  Sooooo proud of herself & her big hair!!!
I was ever-hopeful that Lola's hair would turn out differently than Claire's had...  alas, it did not.
She put her lip out -- she's gonna cry!!! (<-- see video link for an example) 
I would too!
This look feels very "Will Ferrell in Zoolander"... no?

This hairdo makes her want to GOT IT & GOPPLE!!!!
Slightly tamed...
Side profile.  I LOVE staring-off-into-the-distance shots.
It's ON, jackwipe.

I blame Pinterest.

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