Thursday, July 28, 2016

Thankful Thirsty Thursday

So, a few days ago, this happened... again!  (My longtime followers might remember THIS VIDEO I posted on YouTube back in July 2013.)  We were between feedings, and both Scott & I stopped to get a drink, so I thought I'd offer one to Lola, too.  My girl drank from that water fountain like a G!!! And clearly, now we're gonna need to install one in the living room.  HA!  I am trying to hunt down a converter for our little, skinny reverse osmosis dispenser that might turn it into a drinking fountain. How awesome would that be?!

I had to share pics and a video with all of you.  Thank you SO MUCH for always seeing my girls' worth & value.  You have no idea how much that means to all of us!



Wednesday, July 20, 2016

Finding Answers

It isn't a secret that Us Hooligans have been MIA lately, and for the first time ever, I am perfectly OK with it. My most recent blogging hiatus was so needed after a CRAZYYYYYYY winter/spring with all the Zika virus/microcephaly media attention. We are grateful to have had the privilege of sharing our girls' lives, and we were lucky to work with some amazing journalists who truly have gifts of telling our family's story so beautifully.  To them, we say THANK YOU!  

But I'm not gonna lie, it has felt positively scrumtrulescent getting our lives back to "normal." (If you don't click through and listen to that 0:02 clip of Will Ferrell saying that genius word on SNL, you are missin' out!) Where was I? Oh yeah. We've just been livin' the dream! Without going into too many details and instigating a full-fledged sob-fest, suffice it to say that I am oh-too-painfully aware of the fact that my only-child-who-will-attend-school-and-likely-graduate-in-a-robe (though not ruling anything out with our dwarves) has <gasp!> ONE. YEAR. REMAINING. Oh yes, you read that correct. Cal is about to start his SENIOR YEAR OF HIGH SCHOOL. My babyyyyyy!  My son.  MY HEART.  I almost cannot even discuss this situation without tearing up. My emotions have been swirling like a real shitnado up in here. One day I have brilliant perspective, complete with a smile, uplifting thoughts about how "maybe by then I'll be ready," and how he is "preparing me slowly for him leaving by being gone all the time now," and I should be proud of myself that I've "raised him right" so he is "ready for the world," and how much fun it will be to have a student in college who is hopefully playing basketball and growing up and figuring out his future & all that jazz.  I try to convince myself how awesome it will be to have my "nights free" and how much we'll be able to "get done around here" and how we'll be "more social with friends we've lost touch with" and how we'll be "poppin' bottles" & "knockin' boots" more without all of Cal's schedule in the mix. 

Other days (and trust me when I say I try to not let these days outweigh the others), I am a complete disaster. I cry randomly when people ask me non-related questions.  I bring it up at inappropriate times.  I think about it incessantly.  I dwell on how DIFFERENT life is going to be without him around... how QUIET this house is going to be... how different *I* will be. (Damn floodgates opened up already?!?!) Don't get me wrong, (and here's that damn disclaimer again!) I LOVE MY LIFE AS IT IS.  But the keywords there were "as it is." I'm not a huge fan of change. I very much like my life exactly as it is RIGHT THE F NOW.  Thinking ahead to the future has me more flustered than I feel 4 minutes into HGTV's Tiny House Hunters. (I mean REALLY?!?!?  Who wants to live in a 173 sq. ft. house with other people and pets FULL FREAKIN' TIME?!?!?)

We've been living in the moment, you guys. FULLY enjoying the year I DO have left.  I don't wanna miss anything. We've been following Cal all over the country to his various AAU basketball tournaments & truly trying to spend time with him while we can. Hope you guys understand!  I do try to stay active on our Hartley Hooligans Facebook page and on "The Gram" in case you need your daily fix of Da' Hooligans. See you over there!

Recently we re-started genetic testing for Claire & Lola. We are working with Walsh Labs, a part of Boston Children's Hospital, on our quest to try to find answers about our genes.  We began genetic testing when Claire was born, and so far, we have zero answers. We are aware that could happen again, but with technology being more advanced now, we're hoping that this time will be different. The process could take months, years or even decades.  No one knows.  But we're happy to say that the ball is rolling.  We are hopeful that in time we'll be given more clear answers as to how our girlies got their genetic superpowers. Also, we're hoping to find out if Cal is a carrier as well and what his risks are for having children like Claire & Lola someday many, many, many years down the road. We will certainly keep you all posted of any results that come our way!

Our girls were very brave getting their blood drawn.  Missy may quite possibly be the best phlebotomist on the planet. She was so patient with the girls, their high tone, and all that 'tude.  Big love to her for always making my their blood draws as non-dramatic as possible!

"Bitch, I KNOW what's comin'.  GET OFF OF MEEEEEEE!!!!"

"Son of a Nutcracker, that hurts!!!!!!"

"Oh wait.  That's not so bad!"
(Shortly after this, Claire fell asleep while Missy finished up!)

And then it was Lola's turn...

"Ummmmm, tell me you are trying to help me do my best Funky Chicken move right now..."

(The vein blew.)

Trying a large vein in her lower leg...

(The large, super-visible vein that was going to be "THE ANSWER" blew also.)

Moving on to the groin where we were able to get a full tube+ from our wee little Lola!
(Did I mention that it took like 5 minutes for it to slowwwwwwwwly trickle out?!)  
Blood from all 5 of us plus saliva from Lola (since she was only able to fill one tube of blood!) was successfully sent to Boston!  YEAH!  We are also on a 10 month waiting list to be seen in office for a genetic evaluation in KC.  Hoping to start WES (Whole Exome Sequencing) then in addition to the testing Boston is doing.  Fingers crossed!

The girls have been busy during summer school learning about the Badlands & various other awesome ecosystems.  Can I just get an "Amen!" for all my fabulous teachers/therapists that take time out of their summers to come work with our girls?!?!?  WE LOVE YOU!

Amy playing hardcore rap videos about Bison for the girls off YouTube.

Claire gettin' it DONE in her new Rifton Gait Trainer!

If you didn't see the video of her walking, click on this link to see my girl in action the FIRST TIME SHE GOT IN HER WALKER!!!!!!!!  Talk about a blubbering mess of tears... it was THE MOST BEAUTIFUL THING I HAVE EVER WITNESSED IN MY WHOLE LIFE, aside from my kids' births & possibly that one raccoon video where he stands on his hind legs and uses his tiny human-like hands to rattle that rock against the sliding glass window repeatedly for like 2 minutes so he can get more food in his food bowl because he is a freakin' G, but that's beside the point.


The long lost Kardashian sister, minus the gigantic ass, fantastic tan, and fake boobs.
We shall call her Kola.  Or maybe Kocket.  HA!


Thursday, April 28, 2016


Today you are 10 years old, my darling Lola. I can barely wrap my mind around the fact that you have graced this earth with your sassy presence for a decade now.  How can that be?  Is it that whole time warp thing I have discussed many times before?  Is it true what people say about time passing so slowly when you're young and then as you grow up, it flies by in the blink of an eye? Not even gonna admit that time has flown by because I am old, because I'm still super young and spry, right?  (Dadgummit, who uses the word "spry" anymore?!  If you answered "the elderly," imma fixin' to tar & feather ya'.  Hell's bells!)


Ten fingers and ten toes that I didn't even count the day you were born.  Somehow, it seemed so unimportant.  All that mattered was that you were here and breathing and alive.  I cannot tell you how frightened I was the day my water broke, one month before your due date.  All I'd heard your entire pregnancy was that no one knew what the future held.  They weren't sure if you'd be similar to Claire or different.  They weren't sure if you would survive the birth or have major complications. I was asked to answer questions that I was not ready to have to answer about resuscitating you, intubating you, and saving your life.  The answer was always YES, Lola.  Please do all you can, just as you would if she were "typical," I told the doctors.  I hated that word -- "typical" -- because you and your sister were anything BUT typical, and the opposite felt so negative, harsh and unknown.  I prayed every single night for you, sweet girl.  I cried and bargained with all Higher Powers to shave years off of my own life if they'd spare yours. 


Ten sonograms.  Ten chances to see you before your birth.  Ten reassurances that you were still alive and stable.  Ten opportunities to fall in love with you even more.  Ten times I prayed that somehow, miraculously, you'd be healed.

Ten sonograms = The number of sonograms necessary for me to realize that you didn't need healing.

You were already everything I had hoped and prayed for.  Your tiny, malformed brain would not define your life or determine your worth.  You were here to experience life just as you were.  The only person who needed to change was ME.  


Ten perfect birthdays that we celebrated on your behalf.  Ten special days I wasn't sure I'd get with you just ten years ago.  It is mindblowing all we have been through over the course of the last decade.  Choosing the pictures below really took me back.  It allowed me to remember and sit for awhile with each passing year.  Oh, we have come SO FAR, baby girl.  You have proven time and again that you want to be here.  Thank you so very much for choosing to stay.

Unicorn crown from Nova Sky's Co.
A huge thank you to Fatima Lee for sending this beautiful crown to our sweet, magical Unicorn Princess.
(And one to Claire, also!)

A peek back through the past ten years...


The day of your birth... You were -- and still are -- so perfect, Lola.


This picture reduced me to tears immediately upon seeing it.  I am 100% convinced that the siblings of individuals with special needs are some of the most incredible, considerate, compassionate, loving people on the planet.  Cal has always been everything his little sisters needed.  From the day both of them were born, he loved them unconditionally as only their big brother could.  His ability to see past differences, accept people for who they are, and love with his whole heart has inspired me more than he could ever know.  I could never have survived Lola's diagnosis without his wisdom.  I am so honored to be called "Mom" by these three children of mine.

Possibly my favorite baby picture of Lola EVER!  This is what she thought of therapy toys back in '07!


Notice Cal trying to help Lola blow out her candles?

Birthday Princess!


All the cousins!





Post chicken pox.
These pictures were hard to see.  She was SO. THIN.  Notice she is wearing the same dress as in the top picture above, but she literally swam in it.  It is a 6-12 month size (thanks, Jessica!), and at age 7 above, she had lost so much weight due to being ill that she could barely wear that size.  Heartbreaking to see where she was, but we are so grateful for the progress that has been made the past three years!  Lola is seriously the strongest person I have ever known.




Drop that knife, OJ Mrs. Pocket!!!


Lola, Kerby, Cal & Claire  ~  Prom 2016


Ten times I kissed you, through tears, just now after reading you this post.  Ten tears streaming down my cheeks.  Ten "I love you's."  Ten seconds of eye contact after telling you that you are the most perfect third child I could have ever asked for in this life, just as you are.  

Happy 10th Birthday, Mrs. Pocket.  I love you to the moon ten times and back.


Sunday, April 10, 2016

Feel Better Friends

This past week, we were completely BLOWN AWAY when these Feel Better Friends arrived on our doorstep, courtesy of our new friend, Michele Llamas-White.  She had contacted us months ago and expressed interest in making some FBF for the girls.  I didn't quite know what to expect.  I sent her many pictures of the girls, zooming in on their legs and faces so she could try to replicate them as best as she could.  I also checked out their website & Facebook page to see more examples of what had been made before.  I was completely awestruck by the end results created by these ARTISTS at work!  The intricate details of each doll... the precision... the craftsmanship... the careful consideration for the beauty that comes through differences... WOW.  I am still speechless.

But I was even more speechless when our girls' Feel Better Friends arrived.  I couldn't take my eyes off of them for a good half hour.  I just kept seeing things I'd not seen before.  I kept turning them around, feeling their soft hair, looking closer & closer at how PERFECTLY they were made, and tearing up -- all at the same time.  Check it out... (said in my best Fergie voice... you know you just said it out loud, too.  Don't even lie!)

Shall we call them LoLo & Clara?  Lolita & Clarice?  LeeLee & Mimi?  Jury's still out...

Michele flat-out NAILED IT on Claire's doll.  The darling crossed legs (left over right, baby!), her arm position, her beautiful ears, her most fabulous Halloween costume EVER... it was straight up PERFECTION.  ALL OF IT!

And check out mini-Lola!  CAN I GET A "BOK BOK" FROM EVERYONE WHO SAW FETA FIRST & FOREMOST?!?!??!  I love you, Michele, for including our Bok.  He'd want it that way.  (Though he told me he is jealous he isn't as large, bodacious & colorful as mini-Feta... or should I say MAXI-Feta?!)  I love how the doll's legs are tucked under her.  I love her blue eyes.  I love her birthmark, long, flowy hair and her low forehead.  She is so pretty -- just like my girl!

Notice the little birthmark on her chin?
That's what we love about you, Michele -- your attention to detail!!!
(Fake $5 to the first person who knows what movie that's from!)

#FetaForever   #BokNation   #FetaForPresident   #BokIsLife   #InBokWeTrust   #WWFD   #ICouldGoOnAllDay

"I spy with my little eye the most beautiful girl on the planet!  Wait, that's me!"

"Who wore it better?!  If you guys say the Shorty with the bigger head, somebody's gonna be in a world of hurt."


We want to thank Michele & Feel Better Friends for making this a reality for our girlies!  We simply cannot tell you enough how much we adore these dolls, how fabulously they were made, and how touched we are by Michele's kindness.  

For more information about these beautiful, handmade dolls stuffed with love and well wishes, click on the following links:

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