Photo Shoot # 8,294

I don't think it's a mystery that I take a shit-ton of pictures of my family.  I have always felt (since day 1) that having lots of pictures was important because I never want to forget ANYTHING.  IT ALL MATTERS.  The milestones (no matter how wee), the setbacks, the catastrophes, the clusterfucks, etc. -- I WANT IT ALL.  I want copies on my poor, overstressed hard drive & on my trusty iPhone (which currently has 5,211 pictures on it, and I've deleted a crapload), and I want them forever ingrained in my memory because I never want to forget ANY OF IT.  EVER. 

I did a mini photo shoot with my girlies last week for the R-WORD.ORG SPREAD THE WORD TO END THE WORD DAY, and as I was reviewing them to pick my favorites, I had to laugh at some of the bloopers I captured as well.  [Note:  I am *NOT* a photographer.  I'm just a mom who carries her iPhone everywhere who couldn't tell you what aperture or f-stop or ISO meant to save her ass.  Maybe someday in my "spare time" I will brush up on those!]  People may automatically assume that because the girls are developmentally like newborns (or so "they" say) that they're incapable of having "normal" reactions to their surroundings.  Or they may think that they have no personality or no ability to show how they feel.  Or they may wrongly believe that they're "not in there" or "a vegetable" or maybe even not worthy of life. (Don't EVEN get me started... That's why I moderate the comments on this blog.  There are some evil people out there who can kiss my ass.)

I must confess (SO sorry to rat you out, my little "angels!")... Claire & Lola are soooo 11.5 & 6.5 years old (and all that each age entails!).  They are very much siblings.  They are definitely capable of fighting, drama, sibling rivalry, and "talking back" to their parents and/or brother.  They don't hesitate to express themselves and their feelings.  They may be non-verbal, but their thoughts are definitely HEARD.  They are mouthy, emotional, silly, and I swear to GOD, they get my humor.  They show love, they comfort one another and us, they respond to their surroundings, and they most definitely know us/know they're loved/know they run this household/know they're "the shit"/know they're the founding OG's of the WSD (West Side Dwarves)/etc. That's the bidness, man. (Shout out to Snoop D-O-double G!!!!! Our girls are *SO* not on board with this whole "Snoop Lion" bullshit.)

On that note (!), I will let the below pictures speak for themselves.  In sequential order, I present to you my bazillionth micro mini photo shoot...

My three favorites... God, I love these girls o' mine.

"Everything has its beauty but not everyone sees it."  ~ Confucius

xo

Clear

From the beginning of this journey with Claire, then Lola, we so hoped that the decisions we had to make for our daughters along the way would be nothing but CLEAR.  No doubts.  No second guesses.  No questions in our mind about whether we're doing the right thing or not.  It's hard enough having to make some of these choices in the first place.  It's one thing if you are deciding which team your kid is going to play for or which school to attend (which are still hugely important), but it's a whole 'nother deal if your choices for your child involve their health, well-being, and most of all, their survival.

Our most recent dilemma involved the possible placement of a g-tube (gastrostomy tube) for Lola, as we were noticing that the NG tube (nasogastric tube) was being used more and more.  It was a logical next step to consider a more permanent solution to this problem.  A solution which would allow us to not have to tape a tube to our child's face daily or worry about the NG tube slipping from the stomach to the lung before a feeding or one of us accidentally pulling it out at any point during the day.  In addition, placing a g-tube would partially take away the outward physical signs that so much was so very "wrong" with our daughter.  (As if the mouthful of teeth + the teensy body + mature face + the seizures + the super tiny head circumference which falls at fucking -16 S.D. below the norm -- don't EVEN get me started on this or I might cry -- wasn't indication enough something was "off."  I may or may not be delusional about how affected my daughter truly looks. Scott told me he loves me even more for that though, so at least I've got THAT goin' for me.  HA!)  Our oldest daughter, Claire, had a g-tube placed at 3.5 years of age, and it literally was a LIFESAVER for her, so we're not afraid to "go there," for the record.  But something has been different with Lola as compared to Claire.  Something hasn't felt quite right.  We now felt FEAR. We definitely questioned whether this was the right decision for Lola.

Flotation Neck Ring from WaterWayBabies  ~  Our girls LOVE it!
(And no, it doesn't choke them!)

So, we met with our GI doctor who also expressed concerns about putting Lola under anesthesia. The conversation went from us asking, "Can a local anesthetic be used?" to her asking, "Do you want me to do a full-on resuscitation should she go into cardiac arrest during surgery?"  Tears.  More questions.  But also a bit more clarity...  If even SHE was concerned & we trust her with our daughter's life, maybe our fears were justified?

Our GI doctor suggested meeting with an anesthesiologist to discuss our options further.  We had the privilege of meeting with a wonderful, caring, highly respected pediatric anesthesiologist a few days later. He asked us some questions about Lola, we shared our concerns about the g-tube/NG tube, and we asked his opinion about what he felt was best for our daughter.  In my head, I quickly prayed that this decision -- this possibly life-altering decision -- would be black & white.  No uncertainty.  CLEAR.

"I don't get nervous doing anesthesia.  Ever.  I do it all the time on sick kids.  All over the country at many children's hospitals. This is what I do.  I don't get nervous... 

...but I am EXTREMELY nervous about putting your daughter under anesthesia."

Our answers were clear.

We continued discussing Lola, the possibilities, the future, her condition, her health history, what recovery might look like for her.  And while it hurt beyond belief hearing that my daughter wouldn't just have to survive an initial surgery but also probably a good month+ after the surgery due to her condition/fragility, at least then we knew EXACTLY how to proceed with her.  Without question.  I would be lying if I didn't say that my heart broke into a billion, tiny shards hearing this from two doctors I respect & trust.  Two doctors who both feel that my daughter's life is on the line for this elective, "easy" surgery.  But it is crystal clear to us now that surgery is simply not an option for our sweet Lola.  And we are now trying our damnedest to be grateful for the NG tube -- in all it's hideous, asshole-ish glory -- for being our daughter's saving grace.  And we will lean on it in the future whenever the need arises because CLEARLY, that is what is best for our girl.

“You must read, you must persevere, you must sit up nights, you must inquire, and exert the utmost power of your mind. If one way does not lead to the desired meaning, take another; if obstacles arise, then still another; until, if your strength holds out, you will find that clear which at first looked dark.” ~Giovanni Boccaccio

xo

Peeping Polly Pocket

I'm borderline embarrassed to admit that I bought Cal a doll for his third birthday.  I had just found the book William's Doll at a garage sale, bought it, became obsessed with it & then got the bright idea that Cal needed a doll so he too could learn to be a good daddy someday.  Logical conclusion, no?! Needless to say, I thought Cal would think it was lame-o to get some crotchless, girlie doll with long hair to brush, so I researched the mess out of it online, discovered this little gem & knew I was golden.

Ahhhhh yes.  Meet "BB," Cal's anatomically correct boy doll!!! (His name choice, not mine.  I'd have gone with Percy, just for the high chance of mispronunciation & resulting entertainment alone.)

Winter 2001  ~  Cal, age 3  ~  You can thank me for posting this pic later, Son, and yes, this WAS your actual smile for a time there... we know, HIDEOUS indeed.  We'd have to actually TICKLE YOU a half-second prior to the picture being taken for a REAL smile.  WTF?!

BB, though certainly not Cal's *favorite* toy, became a toy he'd use mostly for imitating.  For example, if I changed Claire's clothes, he changed BB's.  If I rocked Claire, he rocked BB.  If I nursed Claire, he'd fake-nurse BB (I am SO not shitting you).  Hell, BB could even drink a bottle & piss (but he preferred the boob)!  My "become-a-good-daddy" plan was working!  At least temporarily... 

As Cal grew older, feeding and watching BB "drain the main vein" became far less exciting when he realized the magnitude of the work involved in taking care of a baby.  He didn't have time for that crap when he could instead be driving around his Little Tikes car or Hummer truck or shooting baskets in the driveway.  BB, his newly acquired doll stroller, his potty chair, his bottle, his change of clothes... well, suffice it to say, they became paperweights.  $65 down the shitter, dammit! 

Fast forward 11 years to the other night when we were downstairs as a family playing pool.  I spied BB & his stroller wayyyyyy up high on a shelf & decided it would be fun to pop Pocket into that stroller & take that dwarf for a spin!  Scott had a little too much fun zooming her around, as the wheels were about bust off that bad boy!  As you can see below, she was NOT amused (but we all were).  How the F can our 9 lb., almost 7 year old still fit in a DOLLY STROLLER?!?!?  I am SO taking her out in that to the mall next time I go.

"Am I in range to sack-tap this a-hole?  Let me check because it.  is.  ON."

After her little joyride, the rest of the fam resumed their game of billiards while Mrs. Pocket & I chilled on the couch.  I noticed BB had been deposited on the couch next to me.  I picked him up, remembered my clusterf*ck of a search for him a decade+ earlier, giggled & decided to remind myself (and my lap-mate, Lola) why he was so friggin' expensive fabulous.  

I cannot be held responsible for the series of events which unfolded thereafter, as it was COMPLETELY out of my hands.  Promise.

(Wish I had a way of viewing this as a flipbook, because that shit would be badass...)

Checkin' out BB's "set-up"

"I shouldn't be lookin' at this dude's magic stick..."

"But I can't look away!"

"I feel so dirtyyyyyy... but is that uncircumcised?  Just curious..."

"If ogling that shaft is wrong, I don't wanna be right."

"Makin' BB my bitch!"

"Suck it, MOTHERRRRR... my head IS bigger than this jaundiced jackass next to me."

"Isn't it???"

"I hate alllllllllllll of you!!!!!!!!  SO.  OVER.  THIS.  SHIT."

One word:  PERSONAL SPACE.  Wait, that's two...

"This fatty is boring me to tears."

"All he does is sleep.  I'm gonna have to teach this putz about pulling all nighters..."

"...and projectile vomiting...."

"...and fake crying to make it look like Claire's the bad sister."

"I am sooooo misunderstood, dammit!!!!"
And when are these friggin' chickenpox scars gonna go away?!  This is some BS."

"Maybe you are the only one who truly understands me, BB..."

"What am I saying?!?!?  F*ck this shit... AMF!!!"

"People in general are used to seeing me as the naughty girl because that's what they've always cast me as."  ~Eartha Kitt 

[NOTE:  No dwarves were emotionally scarred/shamelessly subjected to BB's exhibitionism thanks to the lovely Cortical Visual Impairment (CVI).  You're welcome.] 

xo

It's that time again...

Top 25 Funny Moms ~ 2013!

Apparently I'm a wee bit late to the party, so bip on on over (or is it bop?!) by clicking HERE & vote for Yours Truly every day until February 13!  Hoping for a repeat in 2013!

xoxo

Absent

I have been struggling to write this.  I haven't wanted to "go there."  I don't want to be Debbie Downer, I don't want to drag you all down with me, I don't want to put it out there to The Universe that things are "off," I don't want to perpetuate the whole "misery loves company" bullshit, I DON'T want to buy into the negativity/sadness/grief/worry/all of the above because honestly, NONE OF THIS is WHO I AM, but yet, I seem to be stuck... trapped in these emotions -- this hell -- right now & I so fear that if I DON'T talk it out and in a sense RELEASE IT, it might just stay this way.  And that's not an option for me.  AT ALL.

I have been absent -- absent on this blog, absent emotionally, and absent in relationships.  

I'm just gonna say it.  I've been scared.

I hate that feeling.  I hate it with everything inside of me because I feel so powerless & alone when I'm scared.  I feel agitated, angry and defensive about ALL I AM DOING.  I question everything, thus creating sort of an internal struggle within my own mind, perhaps the worst kind of struggle there is.  It is affecting my health & my well-being keeping this in.  I need to let it gooooooo.  I need to MOVE ON.

I'm scared to even admit I'm scared.

I just want Lola back. The old Lola. The one I didn't worry about so much.  The one without the NG tube, without chickenpox scars all over her body, with a healthy immune system, with her normal "irregular," Scott-aided shits & bizarre sleeping patterns.  I want to see her teensy smiles when I zoom her around the room & toss her up in the air gently like I used to do. I long to see her gain weight. I miss the old Lola so much it hurts.

I am really good at glossing over the shitty aspects of our girls' lives.  I don't get on Facebook or Twitter & spill it because for me, the thoughts & prayers that I'd receive make me feel pathetic, pitied, and like so much is so "wrong" with our girls.  I know this is strange/not the norm (big surprise there!), and I do tell a few people who are closest to me, but I just don't want to draw more attention to what most would view as a setback.  I can't do it for fear of reinforcing the very thing I hope to avoid.  

The pox were a bitch for my girl.  I have never seen of nor heard of a case this bad in all my life. It was brutal. A few scabs fell off her scalp TODAY (almost 3 months later), if that tells you anything.  Her poor face has too many scars to count, and I fear they aren't going to fade much except in color. It's heartbreaking to see.  I won't even elaborate on how the pox affected her eating/drinking, weakened her immune system tremendously, made her cry inconsolably off and on for weeks, & affected her personality dramatically.  I will focus on the fact that SHE (we?!) SURVIVED THIS as well as two subsequent viruses following the pox.

My girl is STRONG. SO VERY STRONG. (And THIS is what I want people to know about her!  Not how sick she's been, how she's been thinner than maybe I've EVER seen her, that the NG tube stayed down 3 weeks until it inexplicably fell out New Year's Eve night (shit got wild, yo... kidding!), that she is eating "normally" now but her weight isn't coming back up yet, and there just are no words to explain how terrified this makes me.  I won't go there with how we've talked about a g-tube for her until we're blue in the face but no matter how much we try to convince ourselves it's "the way to go," we both feel that even subjecting her to anesthesia might be the biggest mistake of our lives. I hate that I am worrying about her ability to handle a simple surgery as a 9 lb., almost 7 year old. WTFFFFFFFF.)

I KNOW it's all gonna be fine.  Really.  (Or maybe I don't?)  Every day I assess her situation thoroughly -- are her eye/arm bones showing less than they were a day or even a week ago?  Is she eating enough?  Did I miss any supplements?  Is the most recent cold/virus gone?  Diaper rash better?  Blowing out diapers still?  Hair any thicker (she lost so much from the pox)?  Mood better?  It's f'ing ridic.  I just wish instead of all that shit I could assess her for how HAPPY she is, how much she is enjoying her life, how much she is getting to do/experience & how much LOVE she is being showered with.  Because to me, that is what matters SO MUCH MORE.

It's just so hard to maybe overlook the negatives for fear I'll miss something... or downplay something I maybe shouldn't downplay.  I just want to be absent -- from fear and worry.  Forever.  And I know that is unrealistic, but dammit, I SO want that.

These fragile moments just put it all back into perspective for me.  I should probably be grateful for that.

"When I hear somebody sigh, 'Life is hard,' I am always tempted to ask, 'Compared to what?''' ~Sydney J. Harris

We got this, Lola.  We got this.

xo

Happy Holidays from The Hartley Hooligans!

Wishing you all a very Happy Holidays, and may 2013 be your best year yet!

All pictures taken by Gavin Peters  ~  We thank him for not only capturing the true essence of our family, but also for the massive chickenpox scar removal he did on the above pics of the kids!  We love you, Gavin! 

Thank you for following and loving our family & for your continued support of The Hartley Hooligans!

xo