Wednesday, March 13, 2013

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


Friday, March 01, 2013


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

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