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Why do I do this to myself?!?!?

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No seriously, WHY???  I know ahead of time EXACTLY what the end result is gonna be, yet I go & do it ANYWAY.  WTF is wrong with me!!!  When will I learn?!  Just because I'm 12+ years into "this life" doesn't mean I don't still have rough days... I don't still feel super vulnerable out of the blue due to one single, tiny trigger... I don't still have days I feel defeated... I don't still question whether I did/am doing ENOUGH to try to help them be all they can be... I don't still cling to the hope that maybe someday we will eventually see true social smiles or a hand that can begin to grasp or hear a tiny giggle.  SO many emotions are wrapped up in each minute of each day of each year.

But then immediately I feel compelled to remind you all that we live in JOY 99% of the time. Because I worry that YOU will worry about ME if you think I'm sad/down/pissed/depressed/bummed/bitching.  I need to get over that shit.  But no seriously, fuck that 1%.  I mean it.  It can bite me.

OK, so a few days ago, I was visiting with Tracey (Mrs. Pocket's bestie!), one of our babysitters-who-has-become-family (who we also happened to infect with the clap herpes chickenpox a year ago -- it's a wonder she still WANTS to be part of this fam! HA!), and we got to talking about how much -- if any -- the girls' heads had grown since birth.  Immediately I was reminded of a website I'd found years ago when Claire was little.  It is a Head Circumference Calculator where you enter your child's sex, age, & head circumference, and it tells you all sorts of bad news your child's head circumference percentile.

When Claire was very young, I pretty much thought that head growth impacted EVERYTHING.  If it grew 1/4 cm, I KNEW.  I measured it obsessively.  I stole one of those already-in-a-circle-with-inches-and-centimeters-shown head measuring thingies from my pediatrician's office during one of our many weight checks.  Whenever Claire would see me comin' with that bad boy, she'd arch in disgust. I would cheer if her head grew, and I was sure that bigger head = bigger brain = more ability = happier Claire = I was doing enough. God, I was so naive.

The interesting part was that as time went on, Claire's head sort of stopped growing. Measuring and seeing gains wasn't happenin' anymore, and I found that doing so just disappointed me & made me feel sad for Claire (and selfishly, myself). I didn't want to live that way. I didn't want my happiness to hinge on Claire's progress (or lack thereof) in any area. Years passed between head measurements. It no longer mattered whatsoever.

A few years ago, another Mom asked me for that website.  I dug it out, and remembering how much all of that used to matter, I measured Claire's & now Lola's head once again.  I can tell you without thought or hesitation what the girls' heads measured both at birth and now.  Just like my birth date, social security number or address.  It's become a part of me.  I remember being super disappointed by the results I saw on that website a few years ago when I entered the girls' info. However, I almost felt emotionally detached from what I saw -- self-protection maybe.

I have randomly measured the girls' heads over the past few years for headbands or hats, but again, no emotions registered with me about what I saw, because head size is just such a *tiny* part (pun intended!) of who Claire & Lola are.

I don't know whether to blame hormones or PMS or Mother F'ing Nature who can't make up her mind about which season it is, but a few days ago when talking to Tracey about whether the girls' heads had grown, suffice it to say... I relapsed.  Oh yes.  I had a mini panic attack when I saw how many standard deviations (SD) below the norm my girls' heads NOW fell.  It was bad enough a few years ago, but it has gotten worse.  Claire dropped another SD, and Lola dropped 4.  WHAT THE HELLLLLLLL.

WHY?  Why are they dropping?  Why aren't they still growing?  Why ARE THEY so small?  Why did I even remeasure?  And why did I have to go plug their numbers into that damn website?!?!?

Here is what I saw...

Claire  --  <1 percentile & -13.1 SD below the norm


Lola  --  <1 percentile & -16.7 SD below the norm
(SIGH)

If it's any consolation, I checked my own head size just to see if it was skewed, & I was in the 61st percentile. Many years ago we checked Scott's head size at the neurologist's office, and he was +4 SD.  Go figure.


I look at things as 'Everything is meant to be.' ~ Lil Wayne


And it SO IS.  I know that.  I just wish I could always remember.

PERFECTION.  Without a doubt.
xo

Much Obliged Monday?!

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I have seriously sucked the big one it up lately with my Thankful Thursday posts, so to make up for missing a few, here's a bonus Monday blog!

Today I am thankful for the kindness of others.

First off, I want to give a HUGE thank you to Grace S. for sending these darling, crocheted hairbows for Claire & Lola!!!  She is a whiz at all things crocheted, including hats, costumes & headbands to die for.  I ordered a super cute, deep purple crocheted headband with a crocheted flower, & it was not only incredibly well made, but it was beautiful, soft & quickly shipped to me for a VERY reasonable price.  Grace & I are Instagram buddies, & my girlies not only send big, wet, slobbery kisses to Grace but also to her precious son, Jayden.  For more pictures and information about Grace's crocheting, check out her Instagram profiles -- @jaydensmommyg or @jaydensmommyg_closet.  You can also visit her Etsy shop by clicking HERE; she is in the process of updating that as we speak!  Thanks again, Grace!!!

OMG, I loooooove her SO.  MUCH.

Workin' the classic "Thinker" pose like a boss

A few weeks ago, I opened my mailbox to find a box.  Inside was the SWEETEST note & two incredibly beautiful, handmade quilts for Claire & Lola.  I was blown away as I unwrapped each one, only to see that both were PERFECTLY suited to each of our girls.  I literally teared up as I studied them, floored by the intricate details, gorgeous color schemes & awesome designs.  I have been slightly obsessed with these since they arrived, and I'm not ashamed to admit that I too have snuggled under them several times.  Sherry & Mia knew my girls would love these, and they were right.  A HUGE thank you to Wendy the Quilt Master & to Sherry and Mia for being so loving and thoughtful.  We are touched beyond measure.


There was NO doubt in our minds that the owls were PERFECT for Miss Claire!
Look whoooooo loves to be wrapped up in her new quilt!  OK, that was bad.  But it's SO true.  

And for Lola, no other theme could be more perfect than...

Cupcakes, chocolate & cherries!
Our little sweetheart!

Pissed off she can't subsist solely on chocolate and cupcakes for her real diet.  You & me both, sister.

Thank you SO. VERY. MUCH. for the beautiful quilts, Sherry, Mia & Wendy.  MUCH LOVE from Claire, Lola & me!!! (Hopefully after seeing this post you can provide a link to where others can buy these darling quilts -- HINT, HINT!  Thanks!!!)


"Have you had a kindness shown?  Pass it on; 'twas not given for thee alone, pass it on; let it travel down the years, let it wipe another's tears, 'til in Heaven the deed appears - pass it on." ~Henry Burton


xo

The Dream That Brought Me Full Circle

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OK, so I had a dream last night.

If you lived in Da' Hooligan House, you would know that this statement, made by Yours Truly, is met 100% of the time with comments such as, "Here we go..." or "Oh dear Lord in Heaven, what NOW?!?!" or "Pull up a chair, kids; this is gonna get ugly." W. T. F!  I'm happy to be the source of my family's demented entertainment, but at least give me some props for a job well done here.  It takes sheer skill to dream the shit I dream!!!  Jeez.

No, last night's dream was loaded with good stuff.  Not "good" good like my dream the other night where I made out hard with Matthew McConaughey and I'm not even remotely attracted to him but I still really enjoyed it and hoped I wouldn't wake up till like 3:45 pm the next day so I could keep enjoying him  his fine-ass body  the dream more than you could ever imagine for even longer. Oops, did I say that out loud?!?!  No, it was "good" good in the feel good sense.  Here's what happened...

OK, so in my dream, my Mom & I went to workout at this random place with a bunch of mats and stations and I've never, ever in my life been to or seen a place like this in existence.  But in my dream, it was where we went & what we did, and we were rockin' that crappy workout like a couple of bosses.  Interestingly enough, we took Claire & Lola with us so they could lay on the mats by us while we got after it.  So there we were sweatin' out to Irene Cara's "What a Feeling" sportin' leotards and legwarmers (OK, that part might be embellished) when all of a sudden Claire morphs into a typical child who can run, play, laugh and talk.  Oh, and she's not teeny tiny anymore.

Let me back up for a minute.  I will never forget the heart-wrenching pain associated with this exact dream for probably the first FIVE+ YEARS after having Claire.  It was so very debilitating.  I would literally wake up crying happy tears initially and then tears of sadness and disappointment after that.  I would want to go back to sleep and restart the dream and stay there forever so I could finally see my baby doing what I thought she was supposed to be doing -- what I LONGED for her to be doing -- what I assumed would ultimately make her (and selfishly me) happy.  It would set off a downward spiral of emotions within me that would carry over for days.  It would result in MANY deep, sorrowful conversations with anyone who would listen about the meaning of life, happiness, joy, and how the fuck I was supposed to FIND all that if my baby couldn't even smile at me. Looking back, I know grieving was what I needed.  I needed to let myself feel it all, however I could, so I could come full circle and realize that happiness is a choice and it was within my grasp.  I didn't need to look far to realize that Claire was ALREADY happy with her life.  She was already light years beyond where I would probably EVER be.

I stopped having that dream where my babies were healed, and I'm not really sure why.  Maybe God knew I didn't need to have it anymore because it didn't serve me.  (I'm not gonna lie, just typing that sentence made me cry.)  Or maybe something within me resolved enough that it would no longer be helpful.  Or maybe it was just too painful all around.  I don't know... but to have had it last night definitely got my attention and I wondered how I would react upon waking.  And today, I am elated to report that my mood was COMPLETELY different post-dream.  Here's the rest of the story...

OK, so it was immediately "abort mission" workout-wise when my baby got up and began wreaking havoc on all those damn mats.  Mom stayed with Lola, and I began chasing Claire around as she ran wildly, waved her arms, shrieked, giggled, and basically did all those things I SO ached for her to do the past 12 years.  Immediately I was back in "Mom-of-Cal-as-a-wild-toddler mode", where I was trying to spare everyone else's feelings of annoyance and frustration with that out-of-control kid vs. realizing that OMFG, CLAIRE IS UP & RUNNING AND HOW THE HELL IS THIS POSSIBLE?!?!?  I was frantically following her, trying to lasso her in, calm her down, and make sense of all this when she crossed the line.  I don't recall exactly what she did, but it was naughty, and I sat her down on my lap in time out.  I remember saying, "Claire, honey, that is NOT OK.  You are in time out to think about it, and when you are ready to make good decisions, I will let you down." She sat very still on my lap and barely moved, almost as if she was thinking about her actions.  When I said time was up, she happily hopped down and began running again.  Her smile radiated like you would not believe.  It made ME smile.  I was in complete awe.

Instantly Cal was present and also enjoying the moment, following Claire around as she tornadoed her way through this gym.  At one point, he grabbed her around her waist from behind to stop her, and it felt like slow motion as I watched the scene I had waited for my entire life unfold before me.  I saw my children interacting as typical siblings.  It was so beautiful, perfect & natural.  I watched them both in hysterics, basically wrestling one another, completely enveloped in nothing but PURE JOY.  I could not help but smile and laugh with them at this moment -- this amazing, surreal, unbelievable moment.

Cal continued his struggle to hold Claire still, and she grew angrier as he restrained her.  She was flapping her arms around, swinging them at whoever she could, and screaming out in anger because she JUST. NEEDED. TO. RUN.  Cal was just trying to help, and she wasn't having it.  I started to tell Cal to let her go when Claire broke free & screamed out at the top of her lungs, "FUCK OFF!!!!!!!!" The dream immediately ended.

I woke up smiling.  That's my girl.


xo

Balls. Busted. (If he had any)

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I want to take a moment to talk about our year & a half old whippet "puppy" (trying to give him the benefit of the doubt), Cash. If you follow me on Facebook or Instagram or even Twitter (shameless plugs... CHECK!), then you know that Cash is the coolest, sweetest, most amazing, loving, nurturing, comforting dog on the planet toward our girls, right?  He is THE BEST.  No lie. I friggin' love this dog. SO MUCH. 

(Side note:  I was teary the other day for reasons I won't go into, & Cash followed me into the bathroom when I peed & licked my tears and nuzzled me while on the head. I swear God knew EXACTLY what he was doing when he put this dog into my family & my heart.)
  



Cashy is also quite quirky & silly & goofy & makes me laugh & smile too many times a day to count.


So, know that I am totally not even shitting you when I say that he has ingested and/or partially eaten and/or destroyed beyond recognition the following items since arriving at The Hooligan household:

  • My favorite hair brush
  • 29 cloth, reusable g-tube pads which cover/protect/absorb stomach juices from Claire's feeding tube stoma
  • Our $100 universal TV remote (Oh, and I spied the volume up & down button as well as several others amidst his feces a day or two later.)
  • One AA battery (which somehow miraculously passed through his intestinal tract along with the rest of the turds without eroding in his belly)
  • 2 of my most favorite, comfy black Reef flip-flops (one each from 2 different pairs & yes, this includes the replacement pair & no, I didn't save the "survivor" from the first pair for Chrissakes, though lesson learned on pair #2!!!)
  • Several ball point pens
  • My super sexy Victoria's Secret bra
  • Multiple burp rags which contained remnants of Lola barf
  • Shit tons (pun intended) of dog poop - his own and others'
  • Baby & adult bunnies, and I do NOT mean stuffed, unfortunately (Do NOT get me started on the baby that I held while it took it's last breath... O.  M.  G.  Cash topped my Shit List for a month after that one.)
  • Scott's brand new white Adidas hat
  • The dropper lid of a homeopathic remedy bottle
  • One hair bow
  • Cal's favorite UnderArmour game shirt
  • Too many stuffed dog toys to count, including the "indestructible" ones made of fire hose
It had been a few months since Cash's last offense, and I was beginning to think he had outgrown his evilness puppyish ways. However, last night, sometime between the hours of 3:30 pm and 11:30 pm, our "sweet" boy also ingested my orthodontic lower retainer which I got my junior year of high school (suffice it to say it's at least twenty ten years old). Yes, the old school kind with a whole bunch of sharp wires sticking out, made of hard, rainbow-colored plastic. 

Whiskey. Tango. Foxtrot!!!!! 



"Dogs are great.  Bad dogs, if you can really call them that, are perhaps the greatest of them all."

John Grogan, Marley and Me: Life and Love With the World's Worst Dog

xo

Thankful Thursday

Thankful Thursday

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Today I am thankful for snow days, steep-ass hills, & my family and friends who are crazy enough to brave 15 degree weather with snow & negative wind chills all in the quest for a good time!

I LOVE YOU GUYS!!!


















"My childhood may be over, but that doesn't mean playtime is." ~ Ron Olson

xo

Weary

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I think you all probably know by now that when I'm absent around these parts for long periods of time that most likely the reasoning behind it involves LOLA + SHIT + A FAN.  I hate hate HATE saying that "out loud" because I'm a firm believer that whatever I release to the universe through my thoughts and words ALLOWS it to happen... you know, that whole "Our lives are what our thoughts create" adage? Yep. And I don't want to imply that all our problems stem from Lola & all her "issues." Nor do I want you to think that me bitching about all that is "wrong" means I'm not soooooo grateful that I was literally entrusted with living angels on earth because they are my WORLD, along with Scott & Cal.  I LOVE MY LIFE!!!  I hope & pray you all know that my family is my EVERYTHING & that is quite possibly the biggest understatement I've EVER made.

But it's been hard.  And trying.  And emotionally difficult.  And physically draining.  And the reason it's been hard is because sleep deprivation is a dirty little whore. I am weary.
I've written about this before too many times to count & I don't want to beat a dead horse here, but suffice it to say, I feel like I am literally half-assing nearly every area of my life due to this inability of my daughter to sleep at night. I am trying so hard to be strong, to be grateful for the few nights of overnight nursing I have per week, & to be chipper during the day, but it's been difficult. I am unsure how to function some days on 30 minutes of sleep a night. I feel old. I feel the toll this is taking on my body. I have gray hairs! My eyes have wrinkles & look puffy. Don't even get me started on these damn thighs/booty/saddlebags (the only thing on the planet I'm NOT half-assing! Haha!). I think I maxed out my cortisol levels like 3 years ago. If I find time to eat twice daily, it's a Christmas miracle. It's been a good decade or more since I cheerfully hopped out of bed ready to take on the day.  And you know what?  I can live with ALL THAT SHIT because I love my daughter so fiercely. But I want to fix this for her, & a little bit (selfishly) for me.  


I am back to researching things like a mofo, scouring the internet for sleep remedies/solutions, & searching for that one thing I hope I'm just missing that could solve this for my daughter. Hell, 3 days ago, I impulse bought an essential oil off of Amazon for like $43 which supposedly helps with "Peace & Calming." I didn't even bat an eye at spending this kind of money for a 0.5 oz. bottle. ADD TO FUCKING CART. Seriously. I gotta help my girl!!! We are back to doing our regular craniosacral appointments after a month "break" due to our insanely crazy schedule with too many basketball games a week to count (GO SHOCKERS!!! 34-0!!!!!), which I LOVE!

Craniosacral with Daddy & Karen

I have been playing meditation music before bed, getting the dwarves into their badass therapy tub, & doing lavender baths. Mrs. Pocket is hittin' the magnesium, getting acupressure stimulation on points which help facilitate sleep, & last night she even got a vibrating back massage on her tight muscles associated with her kyphosis. We've also tried foot rubs with magnesium gel & the new snake oil (AKA "Peace & Calming" -- just wondering if I can ingest this shit?!?! 0.5 oz. may not be enough to zen my tired ass out though, dammit...), low lighting, bright lighting, no light, TV on, TV off, noise in the room, quiet in the room, singing, humming, motion, walking, swinging, bouncing, patting-till-my-arm-goes-numb, sitting up, laying on both sides, laying flat on her back, laying on her back with head elevated, laying on her tummy (don't judge, I'd have positioned her directly on her 4th metatarsophalangeal articulation for 27.6 sec out of every minute for 24 straight hours if that would remedy this insomnia clusterf*ck every. single. night. You have NOOOOOO idea!!! LOL), sleeping in the living room, sleeping in the bedroom, fan on, fan off, bath before bed, no bath before bed, meal right before bed, meal 1 hour before bed, meal 2 hours before bed, going to bed early, going to bed late, feeding homemade organic baby food, formula, bone broth, coconut water, filtered water, scotch & water (kidding, though others have suggested whiskey, but I cannot bear to liquor up my 9 lb. child...), organic baby food packets, Sleepytime Tea, melatonin, tart cherry juice, tryptophan, Rescue Remedy, B6, chiropractic visits, homeopathics, voodoo spells, prayers, begging, bribery, trickery, fuckery, consults with a medical medium, consults with higher powers, consults with every possible person I know & don't know on the planet, and more, to no avail. This chick o' mine is either a vampire or NOCTURNAL, yo.  So, aside from up & moving to Australia or buying her some tiny, fake fangs, I'm at a little bit of a loss...

We'll get back here... soon, love.

I won't give up.  I promise, baby girl.


xo

My Email Inbox Can Suck It, In More Ways Than One

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There in my email inbox along with 458 other messages which I need and want to respond to but never can find the time and you have NO IDEA how much this bothers me sits one unopened message which I have just received. I see the subject, assume it was sent to me by mistake, and I almost click delete with haste. Just as I'm about to make my inbox one message lighter, my eyes narrow, I lean in closer, click on the message, read it thoroughly this time & finally, it hits me. The words sting. My eyes well up with tears. Images, scenarios and little movies play out in my head of things I don't want to see... but yet I do... NO... I can't. It hurts too much. I want to go there -- just for a second -- but when I do, it takes everything in me to not double over into the fetal position and cry that ugly cry that ends with heaving and red, puffy eyes and a migraine and a shit ton of regret but in the end feels so. worth. it. because if I hold these emotions in for too long, I might just fucking explode.

The email message subject:  2014-15 7th Grade Orientation

My "subject":  

  • Sweet, tiny Claire
  • Age 12.5 years old
  • Developmental level according to asshole neurologists: Newborn
  • Zodiac Sign: Leo
  • 34" tall
  • 23.5 pounds 
  • Technically a 6th grader this year
  • Never attended school one single day in her life
  • "Homebound"
  • Founding member of WSD gang (AKA West Side Dwarves)
  • Resident badass

My girl could have started middle school next year. We could have picked out a backpack & got a locker caddy and mirror & that first day of school outfit & planned how we'd fix her hair & prepared for boyfriends & puberty & school dances & middle school drama & sports & pressures. We could have had just Lola at home during the days and let her be an "only child" for a time. We could have seen our daughter interacting with friends, teachers, & maybe coaches. We could have heard others talk about her personality, spunk, long, skinny legs & dimples. We could have seen if she was the typical middle child or a rebel like her mama. It is so hard for me to think of these things, yet I do. Not often, because that is not who Claire is. But I would be lying if I told you that I don't wonder about how she'd be...

When Claire was around 3-4 years old, I remember going to an art show in Arizona & watching hundreds of thousands of people walk past our booth over the course of three days. At one point, I remember asking Scott this very question: "What did you think Claire would be like before she was born -- before we knew she had special needs?" He said he had an idea in his mind, and I agreed that I did as well. At one point, later in the weekend, he yelled out to me, "Gwen, see that little girl over there? She is EXACTLY what I thought Claire would be like before I knew her..." There stood this petite, blonde-haired girl who was smiling, sweet, & active. She was dressed so cute with her high ponytail, bouncing around, completely happy to be at the art show, finding joy in every little thing around her. I watched her interact with her family & it was obvious that everyone around her felt and fed off her energy. She was pretty & perfect. I remember wishing for a split second that I could experience what being her mother felt like. Shortly thereafter, I faked a bathroom break & lost it in a dirty Porta-Potty. I never told Scott. 

Fast forward to now & this email & these feelings & the "what ifs"& this MF PMS. Here I sit reliving those early feelings of sadness & the loss of the dream & seeing other kids Claire's age who would be her classmates if she were typical & how much fun I have talking to these girls & wondering what *MY DAUGHTER* might have been like had she not had special needs & WHY am I going there now? WHY can one simple email combined with hormones & probably the stars fucking aligning just right reduce me to tears so quickly? Why couldn't I just read it & click delete anyway, knowing it didn't apply to us?  I don't know. Maybe because it feels so BIG to me. Maybe because I see other 12 year olds & remember that even though it feels like I'm living in a time warp & Claire is still 5 and Lola's a newborn, that in essence, I am the mom of a 15, 12 & 7 year old. Maybe the fact that time IS passing scares me. Maybe aging and things changing is what I'm wrestling with. Maybe I feel we're testing fate. Or maybe I broke down because I've been trying to be strong for too long. 

Suffice it to say that after I had a good cry, I deleted that mofo. Then I swooped up my middle-schooler-to-be-who-will-never-attend-middle-high-or-any-other-fucking-school-for-that-matter and gave her a huge hug, a kiss, cried a little more, and I told her that she was, without question, the best damn thing to ever happen to me.

Because she SO IS.

xo

This is HUGE. (And not in that kind of way, ya' pervs)

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I am struggling to find words to express how much all of this means -- to me, to Scott, to our family, to our awesome physical therapist, Angela (pictured in video), to our babysitters & nurses & other therapists & most of all to CLAIRE.  Today, my girl worked on CRAWLING.  SHE PERCHED IN A CRAWLING POSITION ON ALL FOURS & HELD HERSELF THERE FOR AROUND 10 MINUTES!!!  I am not shitting you.  My girl worked like a friggin' BOSS today.

I cannot stress enough how HUGE this is.  How for the past 12+ years I've resigned myself to the fact that my daughter probably would never sit/crawl/walk/talk/etc. & that I love her AS SHE IS& even if she never does those things, she still will be my whole heart & soul & literally an extension of me & I'm more than OK with that & just am SO FUCKING GLAD SHE IS STILL HERE because that is really all that matters to me. (And yes, that was the longest run-on sentence in the history of time, but I just am SO. EXCITED! because today my girl defied odds yet again & showed me that miracles do in fact happen & even if she never, ever crawls for reals on her own, she is still the tiniest badass I've ever met & literally my HERO.)

Off to watch this video for the 4th time... chills.  EVERY.  SINGLE.  TIME.  OMFG.

"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell."
~Lance Armstrong <------- total douchebag but still a damn good quote!!! LOL

xo

Eight

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Eight years ago today, at 9:01 am, our sweet Lola was born.


I remember the lead-up to her birth like it was yesterday. To this day, I can still feel all the thoughts, concerns, hopes & dreams I held within me as I anticipated her arrival. To say that Claire's birth date five years prior was peaceful & beautiful would be an outright lie. I was bound and determined to make Lola's birth experience everything I wished Claire's had been... everything I was robbed from experiencing all those years ago. Yes, I knew Lola had special needs prior to her birth, unlike with Claire. I could better prepare & find peace beforehand.  But if I'm being perfectly honest, there really is no preparing for the birth of your child, whether it's your first or fifth, typical or atypical. Each one is breathtaking in its own way, and I felt like I was more in control this go-around to make Lola's birth everything I so wanted & needed it to be.

The fear of the initial diagnosis was gone.  The uncertainty of "Can I do this????" left me five years ago. Worries about survival and if this diagnosis was compatible with life had diminished, as Claire had already proved her strength to those asshole doctors who can totally blow me for half a decade & was still going strong. I felt like I already knew how to parent a child with special needs, and I was positive I could handle it a second time. I was bound & determined to make Lola's birth PERFECT.  

I remember constructing this elaborate birth plan when I was about 7 months pregnant. My doctor asked me all about interventions, vaccines, & even that thick, goopy Vitamin K shit they put in their eyes. We discussed epidurals, pain medicines, natural childbirth, resuscitating my baby, how far we should go to save her life, whether it was "fair" or not that I should have to experience this twice. It was emotional as fuck. I grieved and grieved until I could grieve no more when her microcephaly diagnosis was confirmed at 26 weeks gestation. I was not aware that a person could physically cry and hurt as much as I cried & hurt those first 24 hours after she was diagnosed. 

But the strangest thing happened a day later... I found my strength. I remembered my purpose. I reflected back on the words I always told everyone else when times were rough: "There are no accidents. This life unfolding before you is EXACTLY as it is supposed to be. Perfection still." I finally believed that applied to me. I embraced it ALL. I loved EVERYTHING. I knew Lola was in my tummy with her tiny little head just waiting to change the world... and mostly... ME. This life inside me now felt like a gift.


Lola's day of birth WAS perfect, by the way. No one was allowed to mention anything that was "wrong." The focus was on having a typical birth experience & "normal" discussions about whose nose she had & would her eyes stay that blue & how tiny her feet were & laughing about how she swam in even the preemie sized sleepers I had so carefully picked out pre-birth. I love my doctors & nurses for giving me everything I needed, too. A tiny wound within me healed that day. Even typing those words right now makes me cry all over again (Cash just came over & licked my tears! I love this dog so much.)... to see how far we've come, to once again feel the release of seeing her & knowing she was going to be OK -- WE were going to be OK!!! -- and the realization that life would NEVER be the same again & how grateful I am for that now.


I have absolutely no regrets... just love.  Just this deep, passionate, soul-shaking love that honestly is hard to even put into words. A tiny part of me wants to delete everything I just typed above because I feel like I am diminishing it all... like somehow my words don't perfectly convey how much Lola means to us, how emotional yet amazing this journey has been, how much deeper she has taught us all to love. 

Eight.  EIGHT Eight months in my belly (yep, she was a month premature). Eight years in my arms. I am so lucky.  




Easter 2014
Oh, Lola, you make me laugh EVERY. SINGLE. DAY!

Thank you for perfectly completing our family, Lola... for making us smile, laugh, learn, and grow... for being my cuddly "Velcro baby"... for being a physical extension of my heart... for your spunkiness & sass... for keeping us on our toes... and most of all for blessing us with eight beautiful years together. I love you so much, Lola. Happy 8th Birthday, my sweet, sweet girl.  

xo

The Bitty Brawl

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Hope you guys will excuse my extreme immaturity & watch this 90 second slideshow I just threw together of my dwarves in action a few days ago. I literally cracked up making this, so I hope you enjoy it as well as true sisterhood with all its flaws -- sibling rivalry, fighting & jealousy!

LOVE THESE GIRLS O' MINE SOOOO MUCH!!!

CLICK HERE for a link to YouTube for those wanting to watch this video on a mobile device. The video below was uploaded directly to Blogger & is viewable on computers only, just FYI.




"Sister to sister we will always be, a couple of nuts off the family tree." ~Anonymous

xo

Thankful Thursday

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Today I am thankful for PROGRESS.

Not only has Claire been working on standing, holding a crawling position, & sitting, she has also been spending lots of time in her therapy tub "swimming," kicking, & moving herself around as best as she can! It is so cute to see her kicking her little crossed legs and moving her whole body in the process. She has the most determined little look on her face as she swims! She takes her workouts VERY seriously, and ummm, I have no f'ing clue WHERE she gets this (HA!), but she appears to be VERY competitive.

May 19, 2014  ~  Therapy tub sisterly love

So, when we took her out to her therapy tub yesterday, laid her down to change her into her swimsuit, and SHE STARTED KICKING WITH ANTICIPATION BEFORE EVEN GETTING INTO THE WATER (!!!!!!!!), we all could not believe it!!! This was the *first* time she had ever done this. This was the *first* time she ever knew what was coming & SHOWED US in her own little way! This might be the *FIRST* time she ever showed evidence of memory and/or connecting a location with an activity. My girl's got it goin' on, yo. OMG. Still in awe!!!

Oh, and to that doctor who oh-so-carelessly-and-emotionlessly told us, "Your daughter has no cognitive processing going on whatsoever" after viewing her "extremely abnormal" EEG & doing a 45 second test involving black/white pictures when she was 3 months old with no concern or sympathy for our crying/panic/shock/extreme sadness/hope/bigger-than-he-could-ever-even-imagine love for our daughter...




"I don't know where I'm going, but I'm on my way."
~Carl Sandburg
xo

The Poop Taco

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Ok, so today I walk into the only carpeted room of our house upstairs to find what appeared to be a taco-shaped turd laying next to the changing table. It was different from a normal poo in that it had a defined D-shape. It was lacking convolutions, bumps and the normal length of our dogs' typical dumps, so this had me confused. I squint my eyes, flip on the light, and get close to view it better. It doesn't smell from 3 feet away, surprisingly. As I near 2 ft. away from the possible defecation, I begin to smell it. I get close enough to realize that it is brown and stinky like Mr. Hankey but not actually fecal matter.



I recognize it immediately upon closer inspection. Oh yes. It is clear to me now what I am seeing. I have been here before.  I know the culprit, and I am familiar with his fetishes. 


Cash (AKA Lover of the "Log Jam")

Yep. These vile "victims" make (roughly) the 38th & 39th known g-tube pads our dog, Cash, has thoughtlessly devoured. Most have not been recovered (Thank God), though several random shards have been found amidst actual droppings on Poop Scooping Day with much disgust from the Scoopee. 

Months will pass with no offenses, then other times, 3 are sacrificed in a span of 2 days (like this week). I am not dicking with you when I say that Cash has now officially eaten AT LEAST $156 worth of cloth g-tube pads in the first 22 months of his life. My homegirl, Kate with Tubie Toppers, isn't complaining, but this shit (pun intended) is getting fucking OLD up in here!!!!!

We don't know how Cash manages to find these because we have the basket of g-tube pads in an area he cannot reach. All of us and our babysitters/nurses know he is obsessed with these things & keep them up high at all times. When they come out of the dryer, we are on lockdown to prevent theft by whippet. But somehow he still prevails...

So fast forward to today, me 2 feet away from this gruesome, apparent shitstorm, and what option do I have but to pick the damn thing up?! I don't even flinch. I snatch it up with two fingers, carefully pry open the taco shape, and I spy #2... I mean 2g-tube pads perfectly stacked on top of each other then folded exactly in half. They are both cold, wet, & completely saturated in dung juices/grass/hair/stool remnants.

I then did what any normal human being would do -- I sniffed it on the way to the trash. And then I proceeded to dry heave like a mofo. I threw them into the trash like a fucking boss and ran for the sink in case I hurled. I choked it down, washed my hands maniacally 4 times, and then reopened the trash can to photograph the crappy evidence for all of you.


You are welcome. 
Note:  Check out the disgusting dookie color, stuck-on grass, the random hair near
10 o'clock & surprisingly intact g-tube pads.
PS - Cash is a dick.

And yes, the brownish-blue/brownish-pink one was one I just bought like 10 days ago which today got filed under T for turd... I mean trash. The black pirate/skulls one was another fave, so suffice it to say Cash is currently topping my Shit List. Straight up. 


Faking innocence at the vet yesterday

I am not gonna lie, I contemplated trying to salvage the pads. They appeared untouched & unchewed (& who the fuck swallows two perfectly stacked g-tube pads whole?!?! Then somehow miraculously passes them still whole?!?!), so tossing them felt wrong on every level. Maybe I could try washing them multiple times or Cloroxing them overnight or boiling them in acetone?!?! In the end, none of these ideas seemed like good options, considering I planned to place these previously BM-encrusted pads ever-so-gently next to my precious daughter's open stoma to her stomach WHERE WE FEED HER. Ummm, yeah. Sadly, in the garbage is where the fake feces remained. 

On a side note, and I seriously cannot figure this out to save my ass... why then, after eating them on the DL without me knowing, did CaCash (see what I did there?!) decide to then pick up the poopoo taco in his mouth and bring it BACK IN the house to show me what he had done?  Was he possibly considering re-eating it? Licking it repeatedly like a poopsicle???  Playing with it like a damn toy?! Was it a "gift" for the girls?! Was it brought back in for spite or as a trophy of honor? Was he purposely taking me to Browntown?  Yes.  That must be it. Cash was flat-out sticking it to me. OMG, it is SO ON.


But all that being said, I love this goofball.  SO VERY  MUCH.  How could you not?!?!? He makes me laugh EVERY.  SINGLE.  DAY!
And I love how he loves our sweet Lola, whose chest his nose is pressed against above. Pure love. 

"Love is like taking a dump, Butters. Sometimes it works itself out. But sometimes, you need to give it a nice hard slimy push." ~Cartman

xo

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Funnies, Fits & Farts! (VIDEO!)

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Happy Friday the 13th from Claire, Lola & Cashy!


xo

Thankful Thursday

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Today I am thankful for Claire & Lola's good health.

June 2014

This week we had the girls' yearly exams & went over recent bloodwork we had done (Dr. Allman, you are THE BEST!!!).  Both girls -- while not "normal" (PS -- WTF is normal again?!?!?) -- are doing very well & are quite healthy!  There were a few issues with the bloodwork, but honestly, I would expect that due to their diagnoses.  There were no glaring problems, and the issues of concern from last year have resolved to some degree. We will continue to monitor them yearly & watch for any trends.

Claire finally hit the 25 lb. mark (at damn near age 13)!!!!!!  We fought for EVERY. SINGLE. OUNCE with her (and Lolita, too), so this is a huge milestone! Our Polly Pocket is holding steady at 10 lb. now, up from 7 lb. back in the Fall of 2013. (And no, I did not discuss her low weight back then. Something about focusing on the negative just felt SO WRONG when there were still so many things going RIGHT. Oh, and yes, Claire WAS much larger than Lola when she was 8. NO CLUE WHY. Lola eats SO well! However, her tone is higher than Claire's & she sleeps less. Maybe she is part fairy/pixie/Tinkerbell?!) All I know is that it is SO NICE to finally see Lola sportin' some "chubby" cheeks and upper thigh padding (she gets that from her mother, dammit). PROGRESS on all fronts!

We don't even bother taking head circumference measurements anymore.  Yeah, fuck that.  Tiny heads are beauuuuutiful!

A HUGE thanks & big love to Missy, the best damn blood drawer/taker/vampire?! this side of the Mississippi!!! We love you for working so patiently with us & our girls!

Sit back & enjoy these pictures of the shit show blood draw... Claire was full of eye rolls & Lola was arching & grunting like a mofo.  GOOD TIMES!

CLAIRE:
DON'T TOUCH ME.  I will fart on you.

End stages of one eye roll caught on film...
Also, flexin'& tryin' to embarrass the rest of us with her pythons while simultaneously acting uninterested.
Well played, Claire.

Wait, what???  You're gonna draw blood from my armpit?  HOLY SHITBALLS!!!!!

Notice how I've ceased all blood flow to the aforementioned tortured region?!
This shit is too easy.

Wiggle that bastard needle around ALL YOU WANT but I refuse to emit one drop of blood.  I got this on lock.

Folks, we have a minor snafu here.  Apparently they are going to location #2.
One more stick & I'm gonna lose my shit.  Literally.

What the fucking fuck!!!!  Please kindly remove your pointy weapon NOW.  Please & thanks.  K bye.

Oh wait... this isn't so bad!  I'm just gonna drift off here for a minute.  You know, plot some evil under the guise of sleep.

LOLA:
The ONLY place we've successfully been able to draw blood from Lola was from her armpit.
(Hence the reason we tried there with Claire first...)  

Goooooooooooooooooooooooooooooooooooooooooal!
 We've got blood!

Does this blood loss make me look pale?!?!?!?!
Daddy says I'm not even "fair." He says I'm CLEAR.  He can suck it.

I am SO outta here.  AMF!!!!!!!!!!!!!


xo

Bubbles!

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Enjoy the girls in action in their therapy tub yesterday!  I SO love the expressiveness they show, the interest they take in one another, & how purposefully they respond to what we say to them!  They amaze me every. single. day.


"I am so fresh in soul and spirit that life gushes and bubbles around me in a thousand springs." ~Robert Schumann

xo

Thankful Thursday

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Today I am thankful for therapists who become family.

To those who are willing to put in the extra time, who let themselves get invested in my girls' lives, who listen to me vent, who share their own lives & experiences, who bring their well-behaved children to my house & show me that some kids don't even have to be taught how to find joy in spending time with someone who is different, who truly LOVE THEIR JOB and MY GIRLS and ME... THANK YOU!  You will never know how much this means to all of us.

Max (age 3), Angela & Claire (age 12)

My girl rockin' her crawling position today!

My heart just exploded into a million pieces seeing them together.


Besties!
Claire seriously LOVES Max.  And he just "gets her."



O.  M.  G.
Love this soooo much.





My dear, you are SO loved.

"What is family? They were the people who claimed you. In good, in bad, in parts or in whole, they were the ones who showed up, who stayed in there, regardless. It wasn't just about blood relations or shared chromosomes, but something wider, bigger." ~Sarah Dessen (Lock and Key)

xo

Thirteen

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13. 

How is it at all possible that my sweet Claire turns 13 today?!?! 

Our first year with Claire feels like yesterday.  It was cram-packed full of fear, little hope & worry.  I have not forgotten the exact words that were spoken to us when Claire was 3 months old... "She likely will not live to be 1 year old." I remember feeling as if everything in my life were crumbling -- that my whole world, my reason for being, my future -- were all shattered.  I had so wanted a daughter.  I picked out the name "Claire" when *I* was 13.  I had this image of what my little girl would be like, what we'd do together, how I'd fix her hair & paint her toenails like mine & dress like twinkies & we'd be SO CLOSE & she would be spunky & funny & cute & perfect.  

And we were given just that.  In a very different package than we were expecting, yet no less special.

I am SO. GRATEFUL.


"You can either be a victim of the world or an adventurer in search of treasure.  It all depends on how you view your life."
~Paulo Coelho, Eleven Minutes


July 2014  ~  Sportin' her new 'do!

July 2014  ~  PT in the pool with Angela!

I look back now & realize all that I would never wish to be... as a mother, a wife, a friend, a person.  I love who Claire has made me become.  I love how she has united our family and shown us what really matters.  I love that she touches people -- total strangers -- without ever having spoken a word.  I love that her eyes speak volumes and her expressions convey more than any words ever could.  I am in awe of her strength -- oh, her amazing strength! -- it makes me want to be more & support others more & LOVE MORE.  I love her determination and her spirit.  Guys, my girl is working on standing & supporting herself in a crawling position!!!!!  I wasn't sure this was even possible.  I love that my girl took that "1 year maximum prognosis" and basically told those doctors to fuck off.  Don't think for one second that my annual "Claire is STILL defying your stupid-ass odds" letter won't be sent to that dick doctor today.  I love how my girl loves.  I love that her whole life is based on love & giving as much of it as she possibly can EVERY. SINGLE. DAY. because honestly, that is all any of us should ever strive to do.


"Love is pulling together against all odds."
~Smiley Blanton


Fall 2001  ~  Those eyes... they have always seen straight to my soul.  Then & now.  
Spring 2002  ~  This picture always makes me tear up, remembering how Claire's legs used to not scissor.
I loved her then & I love her even more now because despite her challenges, she still finds joy in all she does.
November 2002  ~  Claire being a "triplet" with her newborn twin cousins, Elisabeth & Christina
October 2003  ~  One of Claire's first smiles captured on film, at 2 years, 3 months of age.
I cannot even put into words how precious this moment was to all of us.  To FINALLY see emotion.  To FINALLY know our baby is happy & FINALLY be able to show us.  To have waited 2 extra years to see such a miracle, not knowing if that day would ever come.  To say this was one of the best days of my life would be an understatement.
November 2004  ~  Photo by Gavin Peters
January 2005  ~  Cal & Claire with Gran
November 2006  ~  I love these hooligans!
August 2008  ~  "Geek Chic" taken to a WHOLE 'nother level before it was even cool!
November 2010

Happy 13th Birthday, my Mimi.  You are my heart.  For always.

July 2014

xo

I Will Catch You

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Claire & me  ~  August 2014

A few days ago, I had a minor freak-out moment when I was trying to get a picture of Claire on the couch. Due to her high tone, her legs cross/scissor, and often times, her legs are straight out in an X formation. It's pretty rad looking, but the problem is that the tightness of her muscles have pulled so hard on her hips that they are now dislocated. The good news is that she is not in any pain from this. It probably happened so gradually that she didn't even notice. We monitor her hips/tone/body closely & work with our awesome PT twice weekly to help her with this issue. There are more drastic medical interventions which may or may not help this problem long-term such as surgery, medicines, etc. However, we can never reverse her cerebral palsy or stop her hypertonicity completely. Due to Claire's extreme sensitivities, we are not able to anesthetize her. Surgery is out of the question. Ditto harsh medicines & Botox -- our tiny girl just cannot handle it.

A few months ago we had a consult with a fabulous orthopedic specialist from Kansas City whom we adored. He too agreed that surgery for her hips or spine could be fatal. His exact words to me were that he was "terrified" to put her under for fear of losing her. Not to mention that some kids I have known who have had hip surgery had to have the surgery repeated due to the fact that the tone was never corrected. The muscles continued to pull on the hips, thus creating yet ANOTHER dislocation. I simply cannot take that risk with Claire..

(And I won't even go into details about how much it shatters me that Lola's hips are ALSO dislocated in the same damn way. Fuck these orthopedic issues. For real. Don't even get me started on the kyphosis/scoliosis shit either. Please know that I love every single dislocation, every "imperfect" curve of your bodies, sweet girls o' mine.)

So back to the story... I was trying to sit Claire up for a picture, and she had one leg bent and one leg straight. I tried to wedge her against the arm of the couch that would support her in this position, and she just arched out of it & buried her head, destroying the fabulously cute hairstyle I was intending to photograph in the first place.

So... I restyled her hair, repositioned her this time in the center of the couch, sort of wedging her adorable little teensy head between the two cushions. She got pissed as hell and tried to arch some more, but I kept her contained with bribes & singing some Lil Wayne for her. (Pretty sure the girls love him because they think he's "their people." Hint: keyword is "Lil." LOL!) I slowly scooched (skooched? skuched?! FRICK! Spellcheck highlighted all 3 words, dammit! Don't F with me!!!) her slightly to the center of the cushion thinking this might have a better result because then her head wouldn't be jammed between two cushions, thus giving her the illusion that she can arch back FURTHER. (Did I seriously just use "thus" a second time in this blog post? WTF! Does it make me sound like a badass?!) This diva is hard to outsmart, but I'll be damned if I was gonna back down!

As soon as I sat her in the middle of the couch in the center of the cushion, she actually relaxed & seemed happier there. I grabbed my iPhone like a ninja & flicked the camera button to start snapping, knowing full well that my photo shoot was gonna be a quickie. As soon as I honed in, focused & was ready to snap, I see Claire starting to literally fall to the side. I throw the phone down & grab her before she face plants on the couch. Claire's eyes widened but she stayed in that same position as she tipped over. I sat her back up, took aim again with my camera, and yet again, Claire's nose made a beeline for the seat of the couch.

I watched in disbelief as yet a second time, she didn't seem too bothered by this. I don't know if she reacted that way because she's a daredevil, because she trusts me, or because that was her initial intention - to FALL (AKA - get out of Mommy's Picture Time!). I once again caught her before she "fell" from a sitting position onto her side/face just inches below.

Now, you KNOW I love my girls as they are, where they are, and even if they stayed at this developmental level for the rest of time, I would be PERFECTLY OK with that.  Not sure why I feel like I need to make that disclaimer every time I spew out a fear/concern/worry of mine, but I do. But I think what got me the most about her falling twice was how no attempt was made to catch herself. I am positive she knew she was falling -- her eyes were wide both times & she seemed startled -- but the thought that she was unable to put 2 + 2 together, extend her right arm, stabilize herself on the couch, & stay upright made me sad. I have seen some amazing progress in Claire during PT the past year or so, and maybe that is why I still have hope that someday something as minor as her using her arm appropriately could possibly happen. I don't know...

What I DO know is that my girl is happy. There is no doubt in my mind. I really need to just follow her lead and not "go there" worrying about why her brain doesn't allow her to do _____ or _____. Until then, I will be her eyes/hands/intuition... as best as I possibly can.  I just hope it's enough & I can continue to be all she needs me to be.

My beautiful Claire, I will GLADLY catch you every time you fall, EVERY SINGLE DAY, for the rest of your life if you need me to. I love you THAT MUCH. You are my heart.

Photo shoot was relocated to the beanbag, which was positioned safely on the floor.  Claire "rewarded" me with some classic, typical teenage "PLEEEEEEEEASE PUT THE DAMN CAMERA AWAY, MOTHERRRRRR!!!!" type glares.  OMG, I love this child.  SO MUCH.

“I love you without knowing how, or when, or from where. I love you straightforwardly, without complexities or pride; so I love you because I know no other way.”- Pablo Neruda

xo
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