Thursday, January 28, 2016

Thankful Thursday ~ BBC Radio

Yesterday I was interviewed by Julian Marshall of BBC Radio regarding microcephaly and the Zika virus, a mosquito-borne virus which is believed to be causing microcephaly in newborns whose mothers were infected by this virus while pregnant. I was honored & thankful to discuss our experience with microcephaly, and I hope that maybe, in some small way, my testimony can help new mothers whose babies were diagnosed with microcephaly to feel less alone & afraid. I certainly don't have all of the answers regarding this diagnosis, but I want to help set their minds at ease however I can.

It is sad to me that microcephaly is being vilified in the media due to Zika, and I hope that the general public realizes that though this diagnosis would not be something I would have chosen, I am NO LESS BLESSED by having two daughters with this condition than if they'd been born typical. I am just as proud of my girls as I am of our neurotypical son, Cal.

CLICK HERE to listen to my radio interview from yesterday!  As of now, I am being told it may only be active for another five days, though I hope to be able to download an mp3 of it at some point so I can share that here as well.

1.20.16 ~  Claire, Cal, & Lola celebrating the #DayOfAcceptance for #3ELove

xo

Friday, January 15, 2016

CODE YELLOW!

(NOTE:  Real Feta is considerably less red in the head/claw region than the chicken pictured above.
An impostor chicken was used for the "LOST!" poster, as real Bok was MIA.)

On the morning of January 8, I snapped the below photo of Cash & Lola. As I zoomed in closer to look at the picture, I gasped and chills spread throughout my body when I realized that our loyal compadre, Bok, was not in his trusty protector's hand. (For all you newbies, Bok -- also known as Feta -- is literally the ONLY thing in the whole wide world that Lola has ever voluntarily held onto, her rubbery roommate, her feathery-yet-non-feathery, feta-cheese-stankin' friend, her poultry partner-in-crime, her yellow yardbird, her chickeny chum. I could go on all. day. long!) Yes, it is common for Feta & Lola to "break up" or be "on a break" several times a day. She frequently drops him like a bad habit, and they live the single life for the rest of the day. Other times, he falls from her tight grasp and gets kicked under the couch. Not today, friends. Not today.

#CashandLola  ~  BFF's times infinity

Nope, today was a different story entirely. I checked all the usual locations for that little pecker, and he was nowhere to be found. He wasn't under either couch, either ottoman, the chair, Claire's beanbag, or on top of the ottoman. He wasn't on the kitchen counter drying with the g-tube extensions after a good cleaning/bath. He wasn't on the tray with all the remote controls and pens and essential oils (yep, I'm one of THOSE people!). I even pulled up all the couch cushions to check for his lifeless, little body, to no avail. What the cluck?!?! Where WAS he?!?!

At this point, I was beginning to assume Cash had come into play with our beloved Bok. I began to fear the worst. Was he residing within a certain someone's colon and/or in a dung pile in our back yard? If so, could he be saved? And if he were miraculously found & saved, could he still be Lola's sidekick if I boiled him, or would that be wrong?! I almost went outside to look, but then I opted against it. (Hey, why do all my posts somehow end up circling back around to discussing shit?! It's like the Six Degrees of Kevin Bacon except in turd form. WTH!?!?) Instead, I decided to bust out a backup Bok. I know, I know. TOO SOON. I get it. I didn't want to believe he was gone either. But Lola seemed distressed, so I caved. I dug out my bag of alternate Fetas, removed the keychain ring (don't judge, it was the only 3" rubber chickens I could find on Amazon), and stuck that trickster in her hand.

Upon having Fake Feta placed in her hand as a substitute for her Bok OG, Lola immediately became wide-eyed and distressed. She stared wildly into the distance while hearkening back to the wise words of Lyndon B. Johnson, the 36th President of The United States of America  ~ “I may not know much, but I know chicken shit from chicken salad.”
That's my girl.


Shortly thereafter, as I sat on the couch racking my birdbrain trying to figure out where on earth Feta could be, I hatched an idea. I wasn't about to put all my eggs in one basket, but I had a pretty good idea of where he might be. I dashed into the laundry room, flung open the washer (which was full of clean, wet clothes, as usual), and I began removing piece-by-piece, shaking each one, hopeful that Bok might magnificently reappear. When I was almost to the bottom, I grabbed a blanket, gave it a good shake, and much to my surprise, Feta took flight (it was only a short flight though, as chickens are not capable of long distance flights)! He sailed majestically through the air, descended rapidly, and lodged himself precariously in the deep crevasse between the washing machine and our laundry cart. I could barely believe my eyes! FETA WAS FOUND!

Save yourself, Feta!  Don't fall deeper into the dark abyss!

At precisely that moment, Scott got home from work. The garage door opened, he walked in, and I yelled, "Bok's been lost! I couldn't find him anywhere & I looked EVERYWHERE! I finally figured out that he might have gotten wrapped up or hidden in a blanket & accidentally thrown in the washer with the dirty clothes & so I went to look & I shook out a blanket & he went airborne & somehow ended up almost plummeting to his death between the washer! Look where he landed! HE WENT THROUGH A WHOLE 57 MINUTE WASH LOAD! I am so glad he is found because fake Bok sucks!!!!!" To which Scott calmly replied, "We must save him." He quickly rushed out to the garage and returned with this...


Noooooo!!!!!



Soaring high above the Machine of Doom... with aforementioned Blanket from Hell in foreground

I've got ya', little fella...



They say that pale combs on top of chickens' heads indicate illness or disease... 

Stay with me, Bok!!!

Don't go to the light... NO!  Don't do it!!!!


TO BE CONTINUED...

Stay tuned for the gripping conclusion of Feta's rescue... Will he survive? Will he succumb to the light?

xo

Wednesday, December 16, 2015

I love you every step of the way


A few nights ago, I dreamt that Lola could walk.

We were on a trip together, and I was holding her in my arms as I often do. Apparently just the two of us went to run an errand, and while there, I needed to use both hands at the same time. I couldn't do so while also holding Lola, so because there was a counter in front of me, I said, "Miss P, I'm gonna need you to stand up. Put weight on your feet, baby girl. Mama needs to use her other hand." And my girl did JUST THAT.  She stood.  Her little body unfurled, her back straightened, and she beared weight through her feet. I could not believe what I was seeing. I finished what I had to do, and then on a whim, I decided to try something else...

I gently set my 2 foot tall, 12 pound, 9.5 year old daughter down on the floor next to me, I grabbed her hands, and I watched in awe as she proceeded to take steps. I let go with one hand, and because of how small she was, I bent over at the waist to hold her other hand, and again, she took off walking awkwardly. It was as if she'd been waiting to do so all her life.

Eventually, she let go of my hand entirely. She toddled down the stark, white, relatively empty hallway in front of me, and I literally watched in disbelief as it looked impossible for someone that petite to be walking at all. People all around us were staring with wide eyes. Tears were flowing down my cheeks as I cheered & cried & laughed & couldn't take my eyes off my sweet Lolita.

At one point, she started making clicking/sucking sounds with her mouth, and I realized that she might be hungry or thirsty. A lady nearby offered me a glass of water in a plastic cup with a lid and straw. I told her that Lola was unable to use a straw, but maybe we could take the lid off & I could try to carefully pour the water into her mouth. I was holding the glass with the straw when Lola pulled my hands closer to her mouth & DRANK OUT OF THE STRAW. She then walked off again, this time holding the glass! A few minutes later, I saw her take the lid off & point into the now empty glass to indicate she wanted more.  Mind. Officially. Blown.

I woke up shortly thereafter in complete shock, shook Scott's arm, & told him the whole damn story, giddy with excitement.

In the past when I've dreamt about the girls being more able than they actually are, a sadness has flooded me upon waking. I usually feel an emptiness -- a longing -- a desire to try to make that dream a reality by working even harder with them in hopes this helps them achieve this goal or somehow selfishly makes me feel like I helped them live a fuller life. I remember talking to their therapists about my ideas & how badass it was to "see" this occur in my dream. I would tell them how I know that all of this sounds farfetched -- even impossible -- but that I really don't want to ever rule things out. Let's let THE GIRLS show us what they're capable of, I would tell them. Oh, yes. In the past, I have always tried to forget how magical it felt in the dream to see what I saw because back then, the absence of this skill in "real life" so completely & totally devastated me. It felt like yet another huge disappointment grounding us once again.

However, this dream was different. I don't know why I was meant to dream it, but this time it felt like such a gift. It felt a little bit like a fast forward of our lives... and as hard as it is for me to say this (I almost don't even want to go there), it almost felt like Heaven -- how I imagine it will be when we reunite someday on the other side. I was able to see my little girl in such a different light. I know her heart inside & out already, but seeing her explore her world & delight in the little things felt like a lifetime worth of happiness condensed into one breathtaking moment.

After spilling my guts to my husband-who-already-thinks-my-dreams-are-f'ed-up-and-insane (for other screwed up dreams, click HERE and HERE. Oh, and you're welcome.), I could hardly wait to scoop up my non-mobile-in-real-life girl, take her back to bed with me, & hold her so tight. I'm not gonna lie, I shed a few tears. But mostly, my heart just felt FULL. Full of love for my girl, full of all the hopes & dreams I still have for her (which don't include walking unless SHE chooses to do so), & full of gratitude for the blessing I'd just been given with this dream -- a new set of eyes to see my girl & all she can STILL do in this life. It was as if I finally realized how unimportant it is that she cannot do more things physically. I am so grateful that her body's many limitations no longer shatter me as they once did. I love the curve of her back due to her kyphosis. I love how tucked up her little body remains. I love how tiny she is and how complete I feel when she is in my arms. I love that I have the PRIVILEGE of even holding my 9 year old in my arms still! I love how cute she looks when she puts her lip out & cries (even if it is seizure-related). I love her little mostly-non-functional hands which cradle her beloved Feta. I love her birthmarks and her chicken pox scars and her now luxurious hair that just a few years ago barely existed. We have come SO far. Lola is perfect to me -- then and now.


I'd be lying if I didn't say I loved seeing her mobile in the dream because I SO DID. But seeing her non-mobile moments later didn't cause me to love her any less -- in fact, it maybe made me love her more. I honestly don't think Lola would be Lola without her current limitations. I used to wish that one day we'd wake up, and Lola and Claire would be miraculously healed. I prayed for it so hard those first few months of Claire's life that it damn near consumed me. I pleaded with God to take years off my own life to give them the chance to sit up or walk or even to not deal with reflux. I used to be so angry when nothing would change. That longing for something different seems like eons ago now. My prayers & wishes for my girls have changed so much. I just want them to be happy, to know the depth of our love, to live full, meaningful lives, and to have many more years here with us to make lasting memories.


xo

Tuesday, December 08, 2015

Time Warp

December 7, 2015

I don't know what it is about early mornings when I'm sleep deprived and exhausted both physically and emotionally that really gets my mind goin'. And by goin', I mean crazy talk. The stage was set for Mommy Meltdown the other morning when 5:00 am rolled around, & Lola was still partying.  I should have known she would crash hard as soon as she came off that milk high. It would have made sense to just ride out the emotional shitcoaster I was on, but NO, I actually went there. I had tried every single position known to man to get her calmed down. She wasn't having ANY of them. Literally I tried to position her on my right side sitting up, my left side sitting up, my right side laying down, my left side laying down, against my knees as I laid down, against the side of the couch facing the TV as I laid down, on her tummy across my tummy, on her back across my tummy, up on either shoulder, stretching her back across the arm of the couch/my legs/the ottoman, upside down (don't judge, I almost tried it!), in her awesome Mamaroo swing, in her Nap Nanny (yes, I know it's been recalled, but my non-mobile child who is being watched 24/7 is safe in there, I PROMISE!), in her bouncy seat, on the couch alone & not touching me, on pillows on the couch next to me... shit, you name it, I tried it, & IT FAILED MISERABLY. I finally told her to cut the horseshit"Lola, you are nine-and-a-half... Almost TEN YEARS OLD. You know better!!!" And that is when it hit me. My BABY is going to be 10 YEARS OLD in April. How is this even possible?
 

4:51 am, bitchezzzzzz!

TEN, you guys. This wee little girl o' mine who still fits perfectly in my arms and on my lap is damn near a decade old. I am speaking of the last child I gave birth to... My 12 lb. "baby"... My spunky, opinionated, nocturnal, spirited, beautiful, freckled, rubber-chicken-loving daughter. She turns fucking *ten* in a mere 4 months. Double. Damn. Digits. 

This life -- it is like a time warp in so many ways. It feels like she ought to be maybe 3. Like it was just a few years ago that our worlds were forever changed as Lola joined our family. It feels like I blinked and suddenly my child-who-appears-nine-months-old is almost ten. I am almost ashamed to admit how much this terrifies me for reasons even I don't understand. 

I think it signifies that life is changing, time is passing, and we are all growing older. Maybe that is what I struggle with... feeling like our girls are defying odds, worrying that they won't always be able to do so, worrying that with age comes more difficulties, worrying about Cal leaving home soon, worrying about my own issues as I age. I don't know. It just feels scary. Change is hard. And for families who have children with special needs, sometimes we just want things to stay the same... for ALWAYS.

December 3, 2015

I so remember everything about my pregnancy with Lola. I remember how scared we were because doctors weren't sure if she would survive the birth process. How so much was simply unknown. How it felt like uncharted territory for all of us. How our perinatologist moved away when I was 18 weeks pregnant and at that time - right before Christmas of 2005 - he basically cleared my pregnancy as "normal." I remember seeing Lola's fully open hand giving us a "high five" of sorts and wondering if that was a sign from her (and maybe God) that she was going to be OK. After all, Claire's thumbs were always tucked into her fists - surely this meant all was well?! 

I remember doctors wondering if she would be more or less advanced than Claire. We all studied her movement on sonogram so closely, specifically looking for spasticity (as if we could see it) or jerky movements that might indicate cerebral palsy/hypertonia or even seizures. When we saw nothing, that gave us hope. I prayed so hard that all these signs put together might mean that my baby girl, whom I prayed for with everything in me for the past five years, would simply LIVE so we all could have the privilege of knowing her.

I remember forbidding the use of the word "Microcephaly" in our hospital room. And I could never forget how we bargained with the Universe to give us that typical birth experience we so longed for -- that we were denied with Claire & possibly took for granted with Cal. How the ONE THING that mattered most to me was that I could nurse my baby and she could be able to bond with me in that way, as I feared my bond would somehow be less or limited somehow because of all that the medical world viewed as "wrong" with her brain. 

I remember my water breaking at 36.5 weeks and knowing that my whole world was about to be rocked and crying because I was so damn scared that I might come home without a new baby. I just wanted our Lola to LIVE. I wanted to take my tiny, preemie, microcephalic daughter home to begin our lives together, however abnormal that seemed to the rest of the world. These fears and possibilities and what-ifs nearly dismantled me.

The one thing I knew with 100% assurance was that we were going to be given the perfect child for us REGARDLESS. And we so were.

Lola made her grand debut as only a diva could - QUICKLY. So quickly that my OB-GYN didn't even have time to arrive, and Yours Truly didn't have time to have a pain-free birth! Yep - I felt IT ALL, and I am positive that was what was intended for us. To feel EVERYTHING. And OH, how we did. 



April 30, 2006 ~ 2 days old

Mrs Pocket was simply perfect. 5 lb. 10 oz. of pure spitfire! Our bitty badass perfectly complimented our family and made us raise our game to give her exactly what she needed in this life... And ironically, also what *WE* needed. 


March 19, 2007 ~ This picture has always meant SO MUCH to me because it is the only picture I have of Lola breastfeeding -- on the beach, no less!  It was so important to me to try to make this work, and after countless visits with a La Leche League leader/lactation consultant, we did it.  You cannot imagine how happy this made me.  The hours spent pumping 5-6 times daily for 2 years were worth it all.

Nearly TEN years ago, our sassy Lola taught us to slow down and live & love IN THIS MOMENT. To cherish each and every day. To focus on the NOW vs. trying to control our future or how we might possibly deal with what inevitably lays ahead (which I cannot bear to say out loud or even type). 

I thought having Claire taught us a lot -- and OMG, I could devote five whole posts detailing all the ways she SO DID -- but together, all three of our children have shaped us as only they could. We are so damn lucky to have been chosen to parent Cal, Claire & Lola. And no matter what, I will continue to pray for TIME so we can love them longer and make as many memories as we can. Even at 4:51 am.



xo

Wednesday, November 11, 2015

Getting A Grasp

Claire Elise  ~  11.4.2015 during Occupational Therapy  ~ #ballislife

Dictionary.com defines the word grasp as follows:

grasp



verb (used with object)

1.
to seize and hold by or as if by clasping with the fingers or arms.
2.
to seize upon; hold firmly.
3.
to get hold of mentally; comprehend; understand:
I don't grasp your meaning. 

Lately I have been struggling with getting a grasp on the enormity and profoundness of my daughters' disabilities.  While seeing seizures, reflux, sleep issues, tone issues, brain issues, dislocations, etc. on a daily basis around here is common; for the most part, I rarely "see" these many issues as things that are "wrong" with my baby girls. To me, it's THEIR NORM.  It's become OUR NORM.  I sometimes amaze myself with all that I can physically and emotionally deal with on a daily basis without letting it rattle me too badly or reduce me to tears out of the blue.  I LOVE THIS LIFE.  And yes, I did feel the need to put that cheerful disclaimer in here right now because the last thing in the world I want anyone reading this to think is that I don't.  Scott, Cal, Claire & Lola (& my crazy, goofy, awesome, possibly homosexual dogs, Romeo & Cash) are my world, yo. They are my EVERYTHING, as cliche as that might sound.

But there are definitely days where that 1% negativity outweighs the 99% joy, and I feel sadness for what my girls (and selfishly myself) must endure. During Claire's occupational therapy session last week, this happened...



I finally saw it.

Her poor thumbs.

Don't get me wrong, I am obsessed with my girls' cute little hands.  I think they are dainty and precious and super expressive and literally PERFECT exactly as they are.  

But today, for some reason, I felt heartbroken.

I felt heartbroken that it was almost impossible for Claire to grasp this tiny basketball.  I felt heartbroken that her thumbs are tucked into her little fists/palms all the time.  I felt heartbroken that because her thumbs are always tucked in, they function more like fingers and don't oppose.  I felt heartbroken that her hand splints haven't helped.  I felt heartbroken because her thumb joints have actually relocated over the past 14+ years so that they are now in completely different positions, thus rendering my daughter's hands almost unusable. Most of all,  I felt heartbroken that the world might view her somehow as "less" because she has yet ONE MORE THING she cannot physically do.  


I felt heartbroken for about 4 minutes until I realized that this is MY issue.  Claire loves her life, and SHE IS HAPPY!  Claire doesn't care that she cannot hold things -- in fact, she doesn't even WANT to hold things. Holding things doesn't = more excitement for my girl.  Holding things doesn't = increased worth.  Being unable to hold things would be devastating for me, but Claire hasn't known anything different her entire life. Having hands that do not function properly doesn't impact JACK SHIT for my girl.  Her happiness and joy are 100% completely independent of how her body is able to function physically.

Now, I will say, Claire does seem to find enjoyment working on optimizing all that she IS able to do physically.  She has been working on standing, kneeling, crawling position, & tummy time (or, due to the hypertonia -- the 5 minute plank!  I guarantee you that my girl could out-plank *anyone* on the freakin' planet. She's a beast!  Thank you, spastic quad cerebral palsy. HA!).  We are so incredibly proud of her for all she CAN do -- which is a whole lot, given her diagnoses & physical limitations.  My girl's a bitty badass!




My new motto...

xo

Tuesday, November 03, 2015

Hartley Hooligans Hero Halloween!

In typical Hartley fashion, we may or may not have gone a wee bit overboard on Halloween yet again this year.  We like to blame it on peer pressure, as our neighbors all do the same damn thing, but in reality, we all just love this holiday.  This year we opted for the ever-popular superhero theme, as it was one we hadn't rocked before. We often refer to our girls as our tiny superheroes anyway, so it seemed fitting.  Any child who has gone through something beyond difficult and come out the other side even stronger is a hero in my book anyway. So without further ado (I have ALWAYS wanted to say that!), I present to you our 2015 Halloween festivities!

The Hooligan 7!

Ace & Gary... I mean, Batman & Robin!

Holy smokes, Batman.  I cannot believe they dressed me in this shit.

Holy strawberries, Batman!  We're in a jam!
Did you see where they tied my mask on?  UNDER MY CHIN.
(Do our dogs have microcephaly, too?!?! HA!)

Cal Kent

An unlikely coupling of Wonder Claire & Pocket Hulk have teamed up to protect & serve!


Quite possibly my favorite picture of Claire EVER!!!

I spy Wonder Bok (Lola's tiny rubber chicken)...

Hulk & Feta SMASH!
(Those damn fists are bigger than Mrs. Pocket!)

Tracey & Mrs. Hulk

Wonder Feta to the rescue!!!
(A big thanks to Tracey for decking out our non-feathered friend in matching Hulk attire! LOL)

My mini-Hulk all tuckered out

OMG.  I love them sooooo much.

Nice wig, Madam.
I am embarrassed to admit that Scott dressed up as "Amazing Scott," complete with a shirt stating this, red floral Hawaiian board shorts, and a blonde, poofy ladies' wig.  W.  T.  FFFFFFF?!?!

A huge thanks to our awesome occupational & vision therapists, Stacey & Joli, for the awesome painted superhero pumpkins!  This was a three week project that involved hand painting the bottom color the first week, the top color the second week & then adding the gold/white accents the third week.
Scott used a black Sharpie to outline & create the final product.  SO AWESOME!!!


Post-Halloween mood





xo
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