Thankful Thursday

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

Funnies, Fits & Farts! (VIDEO!)

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

xo

The Poop Taco

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 2 g-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

Thankful Thursday

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 Bitty Brawl

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

Eight

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

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

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

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

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 7^th 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

Weary

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

Thankful Thursday

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