Thursday, April 10, 2014

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

Friday, March 28, 2014

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 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

Monday, March 10, 2014

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

Thursday, February 06, 2014

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!!!















video

video


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

xo

Tuesday, January 14, 2014

Balls. Busted. (If he had any)


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

Wednesday, November 27, 2013

The Dream That Brought Me Full Circle

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

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