Thursday, April 28, 2011


"Before you were conceived, I wanted you.  Before you were born, I loved you.  Before you were an hour, I would die for you.  This is the miracle of love."
~ Maureen Hawkins

Dear Lola,

Today you are five.  I honestly canNOT believe I just wrote those very words.  FIVE!  I am having a hard time wrapping my mind around this event... this milestone... this prognosis-defying celebration!  Almost ten years ago, I stood neurologists' offices in Wichita, then Kansas City, then Chicago, and each time I was disappointed and heartbroken further with the words spoken about your older sister, Claire, and her future on this earth.  Horrific things were said to your Daddy & I such as, "There is no cognitive processing going on whatsoever" and "This EEG is unlike any I've EVER seen..." and "She is blind" and "Your daughter is basically starving to death" and "You need to set up your child's DNR because she likely will not live to be one year old."  I could go on and on, but I really hate to rehash the past.  I'm all about the here and now, thanks to you (and Claire), sweet Birthday Girl.

Fast forward a few years... We always knew we wanted to have three children, but honestly, the thought of "risking it" once again seemed awfully scary initially.  We'd seen many doctors, worried about Claire's every seizure/reflux episode/sniffle for her first year or two of life, wondered if each illness was "the beginning of the end," and tried to piece life back together those first few years after her birth.  Having baby #3 was hardly on our radar.  We continued with genetic testing, praying that something would come to be over the next few years.  It didn't.  At some point, we had to take a leap of faith, and baby, we did.  Shortly after Claire's 4th birthday, we found out we were expecting you.  We were SO happy, SO scared, SO overjoyed, SO nervous.  Not an hour passed where I didn't pray to God that you would be "OK."  I so needed to "heal," to have a typical pregnancy, to have a "normal" birth experience again, to breastfeed you.  It HAD to be OK.  We knew we had a 75% chance of that.

We had too-many-sonograms-to-count during the first half of the pregnancy, each one more promising than the last.  At one point, you even showed us your hand with your thumb OUT, which to us signified you were OK since Claire's thumbs had ALWAYS been tucked tightly in her fists.  We watched your movement, checking for ANY spasticity.  We studied your forehead, researched normal head circumferences, memorized "the numbers" so when we went for the sonograms we'd know exactly if things were lagging AT ALL before we were even told.  At 22 weeks, we saw your head measurements stall... they were still within "normal limits" (just 2 weeks behind).  We panicked, prayed, cried, promised years off our own lives if all could be OK with your brain.  Microcephaly was confirmed at 26 weeks, and the next 48 hours were some of the most difficult of our lives.
34 weeks in utero ~ Yes, you even "got it & goppled" in utero, Mrs. Pocket!
After the initial shock wore off, we gathered ourselves and our emotions, remembered that you were STILL the baby we wanted, hoped for, and loved.  It was no accident that this occurred a second time.  We were meant to love and experience YOU.  We were already "experts" on Claire and surely you'd be similar if it indeed was genetic -- we could DO THIS.  We made it our sole mission the rest of the pregnancy/birth to make it all we wanted it to be NO MATTER WHAT.  Oh, and NO MORE TESTING.
9 days before you were born
We set ground rules for your birth:  no mention was to be made of "microcephaly" during your birth or after -- it was obvious but irrelevant.  Mr. mean, nasty, hateful, misdiagnosing douchebag jerk-of-a-neurologist from Claire's birth was not to come within 10 miles of your hospital room.  (Ummm, yeah.  We hold grudges, a-hole.  LOL)  No one would swarm in and take you away from me at ANY POINT unless it was necessary to save your life.  You'd stay with us in our room at all times.  Tests would not be conducted on you at all, nor would vaccines be given.  I would exclusively breastfeed you.  We already knew that your sister had defied the odds by going this route, and hopefully you would, too.  Doctors could examine you at any time, but the focus would not be on all that was "wrong."  We were determined to make this birth all we hoped for and more.
5 days before your birth, with big sister-to-be, Claire
Amidst water breaking and a mad rush to the hospital WAY before we were packed or ready, you made your lightning quick arrival pre-epidural (OUCH!) and before my beloved OB could even arrive!  You literally burst into the world 3.5 weeks early, on April 28, 2006 at 9:01 am.  You did things your way, just as you continue to do today.  You.  Were.  PERFECT.


There are no words adequate enough to describe how OVERJOYED we were the day you were born. 


Cal was -- and STILL IS -- *SO* very in love with you.  It was him, after all, who said the WISEST words (at age 7!) shortly after your diagnosis in utero... "Mom, I just want to know her.  Even if she doesn't live very long, I just want to know her & spend time with her."  OMG.  I am so PROUD to be his mother, too.
EVERYONE in the family wanted to meet and cuddle you!  You truly were a teensy bundle at 5 lb. 10 oz. and 16" long.
My Mom ~ "Gran" ~ SO glad she was there with me during labor & your birth!!! 
My Dad  ~  "Papa Jack" or "Poppy" only to you!
Scott's parents  ~  "Grandma & Grandpa" Hartley
My sister  ~  "Aunt Jill"
Cal with Scott's brother & his family  ~  Uncle "Slug" Brett, Aunt Lynda, & Cousin Alicia
Cal & Claire with my sister's daughters/my nieces  ~  Cousins Christina, Maranda & Elisabeth
Gran & Lola
Grandma & Lola (you were named after Grandma Cheryl's Mother!)
Grandpa & Lola  ~  One of my favorite pictures of you as a baby!
My Grandparents  ~  "GG & G-Pa"  ~  You look like a little soldier in this picture!
You in the special Hartley family crib, passed down from generation to generation
You were SO LOVED from the beginning, Baby Girl...
You were -- and will always be! -- EVERYTHING I hoped and dreamed for, Lola.
I am pretty sure your head is like 1/8 the size of your Daddy's head!!!  -12 standard deviations compared to +4 standard deviations = MIND-BLOWING!
Claire was SO proud of you.  She was an instant "middle child," somehow knowing you'd need my attention more than she did.  She was SO patient.
Claire even helped "babysit" when she could!!! 
On this 5th anniversary of your birth, I hope you know how very much you mean to our family, Lola.  I am so very happy God blessed my life with YOU.
I am so proud of the person you've helped me become.  You make me laugh on a daily basis, your mannerisms are the most endearing thing I've ever seen, and your expressions make words completely unnecessary because you -- like me -- are an open book.  I love that you still cannot sleep at night unless you are snuggled in my arms, touching me, with your head against my chest.  I love that you whip your head back and forth (like Willow... HA!), left to right, really rapidly (!) to check out your surroundings.  I love that you yell "NEEEEE!" randomly and your voice sort of cracks like a pre-pubescent dwarf for emphasis.  I love that you suck on your hand all the time -- newborn reflexes ROCK.  I love your two birthmarks.  I love that you always, always cross your right over your left leg like a little lady and that when I stand you up, you automatically look like you're a right-foot-forward slalom water skier!!! (That's my girl!)  I love that you watch me walk by (and you TOTALLY see/sense me even though your vision is quite poor, we're told) when therapists are there almost as if to say, "Mom!  I'm over here!  SAVE!  ME!" because you would rather cuddle with me than "work."  I love that you love to ride horses and swim in warm pools.  I  love that Romeo almost HAS to lay with you whenever you sleep as if you're part of our pack.
I also love that you love being "the baby" when you are with your cousins playing "house."  I love that you will only poop for your Dad (AKA The Shit Whisperer!) and no one else!!  You act as if it's almost your DUTY (doody?! HA!) to save it for him!!!  And I SO love that in order to take a dump, you have to be standing on both of your heels and your arms drop to your sides and one of them is "pumping it" to help get turds out!  I love that you tolerate me doing your hair everyday because that is one reason I TOTALLY love having girls.  You are ALWAYS in motion, yet when I comb your hair with Daddy's tiny beard trimmer comb (just your size!), you hold SO STILL & don't move until I'm done (except on your first french braid EVER the other day -- you were a hot mess for that but it took FOREVER, so I'll cut you some slack.  :)  Pics to come!).  I love how you look in legwarmers & boots! 

I love when you have a fit & to really make the point that you're pissed, you put your head WAYYYYYY back, your arms come up & straight out, you pull up your knees close to your chest, and you hold your breath... waiting... for me to say, "QUIT HAVING A FIT, POLLY ANN!!!!!!" and pick you up and then you INSTANTLY snap out of it like, "WHAT?!  What did I DO!??!?!?"  All because I just tried to change your diaper when you didn't want me to.  DIVA!!!  I love that you love to be tossed and zoomed around -- you are such a thrillseeker!  The rare grins we get from you come when we are roughhousing!  I love that when I cuddle you up into my neck, you press your head against me & don't pull back for a few seconds and when you do, you make that cute little grunting noise at me.  I love that I had the privilege of breastfeeding you for 25 months, even though it involved pumping 4+ times daily and using a Medela SNS supplementer for all your feeds.  It was SO WORTH IT and truly was one of the best bonding experiences we could ever share.  I know it helped keep you healthier than anything else and improved your reflux.  I love that you are small enough (pocket-sized!) that I can carry you everywhere -- and know that I gladly will do so for the rest of my life if you need me to. 

Your life itself is so much more valuable and important and full than most people give you credit for.  I wish that everyone could know you as I know you... and love you as *I* love you.  I am so damn lucky to call you my daughter.

I love you more than you will ever know, Polly Ann... you are my heart.

Happy 5th Birthday, Lola.  I am SO proud of you. 

xoxoxo  Mommy

Friday, April 22, 2011


"Earth provides enough to satisfy every man's need, but not every man's greed."   ~ Mahatma Gandhi (1869-1948)

First off, HAPPY EARTH DAY!!!

There have been many "firsts" lately with the girls and our family in general.  People always ask me if things ever change much with the girls... and to this, I reply, "EVERY DAY OF MY LIFE!"  The girls, while developmentally/physically kind of in a time warp (!), are constantly in a state of flux (I may or may not have REALLY wanted to omit the "l" and add the word "cluster" in front of that last word!!!!! HAHAHAHAHAHAHA!).  Here's to celebrating all our "firsts" and a few recent changes, no matter how tiny!

FIRST pedicure of the season for our Lola...
Thanks to our babysitter, Charcie, for this!!!  Check out the bling, too!  LOVE the flowers.  OMG.  And as a reference, they are totally like the size of a pencil eraser, if not smaller.  :)  Oh, and check out Lola's crazy dorsiflexion?!?!?  Yeah, our girl can totally touch her toes to her SHINS -- no lie.  SUPER fun party trick nonetheless! 
Our FIRST-born "son"...
Pre curled up in the Boppy!  He will be 14 this year, despite many health problems the past 2-3 years.  LOVE THIS DOG.  SOOOOO MUCH.
A FIRST in the leg-crossing department for Claire...
Yes, Claire looks like a dainty little lady in this picture, but damn the Cerebral Palsy all to hell!!!  LOL  For ALL her life, she's crossed her left leg over her right leg.  NEVER the opposite.  And if it was right over left, she'd have a total shit fit!  Starting about a month or so ago, she went "fakey" style ~ totally switched it up with right over left almost ALL the time now.  I'm not at all disappointed, as I wonder if it is allowing her to sit upright at 90-90 (virtually unassisted) better, as it's kind of "unwinding" things in her spine/hip area?!   YEAH CLAIRE!   Pics to come in the next few weeks!
FIRST thing in the morning...
Ummmm, HELLO, BED HEAD!!!!!!!  Holy balls, Polly Ann!!!!!!!
FIRST time to try this...
LOVIN' the red streak!!!  And yes, this pic was totally taken in my Swagger Wagon.  Hollaaaaaaa!!!!!
FIRST Piggies & Paws experience...
Notice their darling little footprint garden fairies?!  Thanks to Abby for having the girls over to try this out!  WE LOVE IT!!!
FIRST time I've EVER seen Claire pull this stunt...
Raise your hand... if you're SURE!  Ummm, I have a question!  PICK ME!  Dwarf POWER!!!!!  WTF?!??!  Scott found it humorous at midnight-ish!  :)
"Throw your hands in the air, if you's a true playa!!!"  (Claire's a HUGE Notorious B.I.G. fan -- she's down with the gangsta rap)  This shit went on for a good 10-15 minutes!  She's intense...  :)
After the fact... lookin' all sweet yet slightly crazed and flushed and exhausted.  Love this child.  OMG.  THOSE EYES!!!!! 
FIRST and favorite newborn reflex which never went away -- THANK GOD!!!

SUCK IT!!!!!!!!!!  (and yes, she IS a southpaw)
Not f'ing around, so to speak.  Gettin' PISSED!  HA!
Same shit, different day...  :)  I love it so!!!!!
The results of all her "hard work" ~ check out the massive drool stain?!  And HOW CUTE is her little head in this picture?!?!?  Seriously!!!
FIRST skirt of the Spring season...
OMG, I want one in my size!!!!!  Claire totally has the right to bare arms.  HAHAHAHAHA!
FIRST cousins!!!
Maranda & Lola (the best of friends!), Cal & Claire, Elisabeth, and Christina & Minnie ~ LOVE YOU GUYS SOOOOOOOOO MUCH!!!
FIRST reaction to my flash in a dark room...
Worst pic ever.  LOL  Cracked me UP!!!!
FIRST twinsies!  We were honored to have met the Tellinghuisen Family a year or two ago, and I am SO glad we did!  I can honestly say that I am PRETTY SURE they are living parallel lives about 8 hours north of us on a daily basis.  LOL  Steph and I communicate daily, share the goods/bads, and provide support that comes from a place of knowing exactly what life is like with two children with profound special needs.  I am not sure what I'd do without her!!!  Our kids look and act SO much alike that we call them "The Quads."  No lie, they could pass for siblings... Observe:
Cal with Aidan & Ty and Claire & Lola ~ May 2010 ~ Double down!!!
Famous Almost! 

"I don't know how to put this, but I'm kind of a big deal..."  LOL
Hartleys & Tellinghuisens ~ October 2010
That pumpkin might be bigger than Mrs. Pocket's head!  LOL  Claire's trying to bitchslap her sister while Ty & Aidan are perfect angels  ~  WTF?!?!?  Bad dwarves!!!!!!  Get your shit together!!!!!! 
Aidan and Ty with the newest addition, Cole (AKA Mini-Cal!)!  Cannot wait to meet him very soon ~ pics to come!!!
Related Posts Plugin for WordPress, Blogger...