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


Erin said...

2 words. Astoundingly Beautiful. That goes for Lola as well!

Jill said...

Gwen, your family is SO AMAZING! After working in Special Ed. for so many years and sitting in so many negative meetings, it's so refreshing to hear you talk about your girls in only a POSITIVE way! They are sooo lucky to have you and Scott for parents - and Cal for a brother!!! :)

Nan said...


I remember so well those 9 months. Every emotion you wrote about every diagnosis, I remember like it was yesterday. Makes me miss the molehill a bit. We loved you then, and automatically loved our new molebaby, Lola. All these years later, it's still an honor and a joy to know you guys and to be part of your lives. High fives from Sev to Lola on this outstanding milestone! Happy Birthday.

Joyfullygrateful said...

Gwen, I so remember our conversations about this precious bundle of joy during the time she was "living" both in your heart and under it! We found so much peace, for moments at a time, during those conversations. I am collecting my "tea" for a visit with you ~ even if it is in my dream. Thank you for sharing little Miss Pocket with us. I love her (and you) to pieces.

Kathryne said...

As always Gwen, I am just left speechless by your words. The love you give to all three children amazes me. Esp. the caption of what Cal said about Lola. You and Scott are amazing parents. I am so glad our girls led us to each other!! Love you! Kath

DoRe' said...

Sweet, sweet post. Hau'oli la hanau (say that 5 times fast! ;-9) to your sweet baby girl; you are an amazing family.

P.S. I was 16 inches long, too; weighed 4 lbs 13 oz. She would've totally kicked my butt if we met on the preemie playground. ;-D

Janene said...

Happy Birthday, Lola!! Hugs for her please--you absolutely put your heart out here for all to see--pure beauty in its truest form! I love that because of the first Christmas letter and picture we received from you--your entire family is etched into Anjalene's memory--a dream of hers (and mine, of course) is to meet your beautiful girls that "God made so tiny and full of life. . ." Amazing what truths kids know, isn't it?

Amy Blanton said...

I'm so glad I found your blog. You make me see the brighter side of every day with my little girl. The love you have for your family is one in a million. Words cannot express how great it is to read about all of you. God bless to you and yours and the MANY more memories to come!!

Frances said...

I am SOOOOO happy to find this site!!! As usual.. you and your girls.. inspire me!!!!

Unknown said...

It would be so nice to have a "like" button to push because this blog is so uplifting!!! My two sons are autistic and while they were growing up it could be overwhelming at times but I like you and your children could not imagine life without them! I also listened to the doctors, teachers, psychologists etc and know now that that isn't always the best thing to do. Only you know your children and what is right for them. I wish only the best for you and your family as you continue down this road called life. :)

ohblackberryjam said...

What did the doctor misdiagnose Claire with?

Gwen said...

Pachygyria initially... Which means thickened cortex, which is strange because it is actually normal thickness or too thin in parts.

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