Thursday, December 08, 2016

Self Care (in La Paz, Mexico!)

I remember after we had Claire, feeling very much like I should not ask ANYONE for help.  I wanted people to know that I could handle two kids, and to me, at that time, asking for assistance with day-to-day tasks (beyond asking Scott) felt like I was showing weakness.  I chose to have another baby, and by God, I was gonna take care of that baby on my own no matter what!  Plus, I just wanted to.  And in my warped, postpartum mind, no one was gonna do it as well as I could.  And I was breastfeeding.  And taking care of a 2.5 year old.  Yet still, I rarely asked for help.

Then Lola came along about 5 years later.  She required a little -- wait, who am I kidding?!?!? -- A LOT more of my time.  Not saying she was a diva, but she was toooooootally a diva.  Lola also breastfed, and in order for me to keep this going, I had to use the breast pump after each feeding or my supply would have decreased significantly.  It was a big ordeal & basically meant my boobs were out like 18 hours daily and Scott was not complaining. So, like eleventy seven times a day, I would hook up my Medela SNS feeder, strap it on (get your minds out of the gutters, ya' pervs!), feed Lola, burp Lola, hold/position/keep her upright for 30-45 minutes, pump for 5-10 minutes, save the collected "Liquid Gold" in bags & freeze them, and then I'd have like 26 minutes before I had to start the whole process again. I followed this schedule daily.  For two whole years.  So asking for help during this time was essentially not an option. Aside from a boob transplant, there was really no way to help me except to maybe burp Lola/freeze the breast milk/clean breast pump/hold Lola upright for 45 minutes/take a nap for me/do laundry/change my sheets which probably had been on my bed for a month/vacuum/pour me a glass of non-alcoholic wine/fill the dogs' food bowl/pray for me/possibly shower for me. Nothing major.

So, by the time Lola was maybe 3-4 years, suffice it to say that I felt like I was losing my damn mind.  It truly felt like all I did daily was give-give give.  And I LOVED GIVING (and I STILL DO!), don't get me wrong... but it was too much.  I rarely had time for myself, aside from a random date night here or there.  I LIKED that I was there for my kids.  It felt good to be the one to raise them & stay home with them.  I was grateful beyond belief to Scott for helping make that work.  How on earth would I EVER find a daycare anyway that would provide 1:1 care for BOTH GIRLS as good as I would?!  The answer was simple.  I COULDN'T.  It made more sense for me to be home, and I still look back with gratitude for having those days at home with all three of my kids, no matter how taxing it was on ME.

I remember being terrified to find a babysitter.  Would they EVER be good enough?!  Would they love my yayhoos as much as me?  NO WAY, I thought.  I remember hearing about a few babysitters through my girls' PT -- one was a nurse & one was a teacher in a special education classroom.  I also found a friend of mine who taught Yoga for the Special Child to help me out, each of them providing 3-4 hours a week of babysitting.  I remember thinking 11 hours a week out of the house felt like I was being a horrible mother.  Like, WHY did I need to "GET AWAY" so bad?! What was I running from?  I usually went grocery shopping or ran errands.  On rare occasions, Scott & I would do a date night or go with just Cal to one of his basketball games. It felt SO WEIRD (and still does) being out & about WITHOUT THE GIRLS.  It always makes me feel guilty.  And like part of me -- part of US -- is missing.

But oh how Jan, Patti & Jana loved our girls... like they were their own.  They formed connections with our girls beyond my wildest hopes & dreams.  They also bonded with Cal.  And our kids bonded with THEM.  And I was happy.  Because to me, it felt like there were just more people loving my kids, & how on EARTH could that EVER be a bad thing?!?!?  I got over my guilt pretty quickly.  And I looked forward to those 3 afternoons/evenings a week where I had some "me-time." And then I felt guilty I looked forward to them because did that mean I didn't always want to be with them?  Geez, this mommy guilt is a dirty little bitch!

Those three babysitters stayed with us for many years, and we also had others along the way... Charcie, Jenny, Kristin, Tracey, Rachel, Hannah, Kelsey... not to mention others that weren't able to stay quite as long.  And they all shared one thing in common -- they all became FAMILY.  All of them loved our kids fiercely. And I think the reason that they became family is because they got to experience & feel firsthand what our life is like -- all the intense joy/fear/sadness/hope/love that comes with knowing & loving our unique, perfect girls.  They each were a fill-in Mommy to my 3 kids, and I love them dearly for loving my kids as their own, because that is not the easiest thing to do. On top of that, our lives are laced with so many highs and lows, sometimes I worried (and still do) that it might just be wayyyyyy too much for others to take on.

I think one of the things I have gotten out of welcoming help into my home is that I overlooked that basic human need -- self care -- for way too many years.  I am almost always "on."  Whether I have help at home or not, I'm basically on call, I'm just in the other room, I'm constantly listening & responding to so many different "calls" literally 24/7.  Just since I've been writing this, I have had to reposition Lola in a cushy chair next to Romeo in the office 3 ft. away from me no less than 6 times in the last 13 minutes, I had to get Claire out of her chair & put her on her tummy in the beanbag, I had to change her diaper, and I had to check Lola's diaper, get Lola's hair out of her face twice, locate lost Bok and get him into position, pull the blanket off Lola's face (which happened because she wants to be held & is arching her back & burying her head on purpose so I'll do just that!), go try to stop a seizure with some Clary Sage oil, and Lola is now ready to eat & I wish I could just stay put & bang out my thoughts here real quick, but I know I need to feed her THIS INSTANT, so I'll be right back... (And yes, THIS RIGHT HERE is why I can barely find time to blog these days even though I SOOOOOO want to!!!!!!!! It has taken me 3 weeks just to finish the writing on this post!)

Pretty sure this was Row Pi (π?!) on the plane, right in front of the shitter,
but we didn't care because we were off to MEXICOOOOOO!

Back in 2013, I looked at Scott & said, "This year, we're taking a trip -- just you and me.  We're going somewhere quiet & tropical & off the beaten path & we are going to think about our relationship & focus on the two of us & knock some boots & find ourselves & be "off" for more than a few hours in a row.  It is crucial for us -- for our marriage, for our sanity, for our kids.  We NEED a break.  We are TAKING THAT BREAK this year." We visited the U.S. Virgin Islands/British Virgin Islands that year for 6 nights.  It was glorious.  Our babysitters all chipped in and covered the days, while our night nurses covered the nights (we finally had some by this point, due to Lola's desire to torture us not sleep like freakin' EVER -- Thank you, Lucille & Becca!!!).  It took many months of planning to pull it all together, and it was soooo worth it.  If you look back on my blog, you'll notice that I didn't post a damn thing about it back in November of 2013.  I only posted two lone, vague pics on my Instagram that trip (@gwennieh -- and yes, that was a shameless plug! #instaDAMN!).  It wasn't until our now-annual trip of 2014 that I got the balls to blog about it because I was borderline ashamed & felt guilty AF for even leaving them for 10 whole days. CLICK HERE to read about me bitching about traveling to straight-up paradise in November of 2014 and please don't punch me in the cooter next time you see me after reading what I said. HA!  I also refused to post about our clusterfuck of a trip that we took in 2015 where Lola got so sick she was on oxygen day 4 of our 10 day trip, and I damn near cashed in my trip insurance (which cost hundreds of extra dollars but we felt we HAD to add) to fly home to my baby.  My "team" at home assured me they had it under control, and so we stayed... and cried in beach bars... and questioned if we were the worst parents on the planet... and barely enjoyed that faraway beach the next 6 days since we just wanted to be home & fix our baby.

Cabo San Lucas, Mexico

We contemplated not even taking a trip this year, as last time we did so, it was a complete disaster.  We opted for a shorter trip, and we headed out to a new destination this year -- Baja California Sur, Mexico. We flew in to Cabo San Lucas, Mexico, rented a car, and drove 2-3 hours north to the quaint town of La Paz, Mexico.  I found out about the opportunity to swim with whale sharks there somehow on Instagram.  The more I started researching this area, I found out that you could also swim with sea lions there if you ventured out to an island off the coast of La Paz called Isla Espiritu Santo.  This island is connected to another island called Isla Partida.  Off the tip of Isla Partida is a sea lion colony/rookery called Los Islotes. I wanted to stay on Espiritu Santo, but I read online that both islands were uninhabited due to the fact they were part of a UNESCO Biosphere Reserve. One of the beaches there has been named a top beach in the world, so I knew it would be gorgeous.  I liked the fact that it was quiet & less travelled.  Our daily lives back home are busy enough -- we prefer traveling to "off the beaten path" locations that take us back into nature where we can really just BE. We opted for a different type of trip... instead of our usual homes or a fancy resort on the beach, we decided to circumnavigate part of the islands by kayak & camp out in tents on the beach for 3 nights/4 days (sort of a trip-within-a-trip, if you will!) with BOA (Baja Outdoor Activities).  No permanent structures can be built on these islands, but camping IS permitted. We felt unsure about this excursion for several reasons.  First, we kind of like to relax & be pampered on our yearly vacations.  Second, we knew we'd have little to no cell phone reception while out there.  Lastly, we weren't sure if we'd like being part of a more organized trip vs. just winging it as we usually do. BOA worked out an arrangement so we were able to check in by phone with our family back home daily, and our fears quickly dissipated. The island was BREATHTAKING. Kayaking was such an awesome way to explore this island, and the trip didn't feel rigid or "planned out" at all.  We all worked together to ensure it was exactly what we hoped it would be, and we still had plenty of downtime to explore the island as we all chose. Words cannot express how unbelievable this entire experience was. This isn't a sponsored post, but I have to give a shout out to Chino, our guide with BOA, for helping make this trip so unforgettable.  xo

CostaBaja Resort in La Paz, Mexico ~ Right on the Sea of Cortez 

We ended up kayaking around 3-4 hours daily, floating above the most pristine, clear, turquoise water you can even imagine.  We saw fish & turtles swimming under our kayaks.  We watched unique, regional birds fly above us.  We were able to stop on deserted beaches that looked like they should be on a postcard.  We met people from all over the US/Canada/Mexico who became close friends in a matter of hours. We ate fresh-caught seafood daily, watched the sun rise and set, and stared at the stars until we became sleepy, watching for meteors. We talked & laughed & enjoyed Happy Hour & laughed & snorkeled & swam & laughed & hiked in our "free time." We crowded around an old transistor radio on Election Night, seeking out the only American radio station we could find to listen to the results. I wouldn't have wanted to be anywhere else in the world but there --  in that moment -- with those exact people -- that night. Unlike the Virgin Islands, it wasn't lush and green on Espiritu Santo -- it was a desert, complete with cacti, jackrabbits, scrub brush, and gorgeous pink mesas & cliffs. The water was turquoise and surreal, almost looking more like a swimming pool than the ocean.  If you've never experienced the Sea of Cortez before, I'd highly recommend it. Surrounding the islands are many coral reefs, and it's even been referred to as "The World's Aquarium" by Jacques Cousteau.  We can definitely vouch for that. The snorkeling was incredible -- definitely an amazing, life-changing experience!

The gang!  WE LOVE YOU GUYS!!!  And when are we doing this again?!?!?

Not only were we able to swim up close & personal with sea lions in their own environment, but we were also able to swim in the wild with dolphins and whale sharks.  I am still in shock about this, as what we saw almost doesn't even feel REAL to this day.  To be 1-2 feet away from whale sharks that are 25+ feet long and as big around as a school bus while they filter feed/gulp water in a vertical position had us in awe. From the side and back, they truly looked like a black shark with white polka dots.  They had the gills and the tail that was very "sharky."  But when you looked at them head-on, they looked like a whale or a really big catfish almost! They were so gentle & surrounded by a little fish posse who must have been mooching off of them for food. We were so grateful to Yosef at Baja Desconocida for taking us out to swim with the whale sharks and also to give us the opportunity to swim with wild dolphins while out in La Paz Bay!  We didn't expect to get to swim with dolphins at all (we simply hoped we would see a few!), but on the way to swim with the whale sharks, we saw many dolphins, and they wanted to interact with us. We slipped into the water, and they would zoom past us, usually in pairs!  They made a very high pitch squeal underwater that was instantly recognizable, so you could tell when they were getting close.  They really had no reason to be near us that day, except that they simply wanted to play. We would dive down & twirl around, and they'd follow. One swam past me about 2 feet away with a smile on its face!  They had such immense power balanced with such gentle grace. We also had the privilege of being just a foot or so away from dozens of sea lions (who we couldn't touch, but they could & did touch us!).  They would mimic our every move & swim up to our masks as if to say "hello!" They played with us like sea dogs!  They were so inquisitive & couldn't figure out what our GoPro camera was, so they just kept swimming up to it and staring directly into it.  This was absolutely one of the coolest experiences OF MY LIFE!!!!!  I simply have no words. It was so much more than I ever could have ever expected or hoped for.  All 3 experiences were definitely Bucket List items for us!
A close-up of one of the dolphins we swam with!

Whale Shark Selfie!

I am so very grateful for this trip to Baja, for meeting new, lifelong friends, for time away with Scott, for people holding down the fort at home like bosses (!), for being able to witness heaven on earth in Mexico, and for finally recognizing the absolute critical importance of self care. I leave you with a few pictures & videos from our trip...

The first beach we were dropped off at... I felt like I was dreaming!

The water here was seriously that ridiculously pretty.  NO FILTER!

We could see coral, fish, sea turtles and more beneath our paddles all day long.  STUNNING!

We snorkeled around those rocks for a few hours and saw two octopuses (octopi?!) up close!  One hid quite a bit, but the other one was literally "running" along the bottom of the ocean a few feet beneath us, changing colors instantaneously.  It was UNREAL.  As he zoomed from one place to another, he was light blue, then would land next to a dark brown rock with white streaks and he would instantly look that same color.  I have never seen anything like it!  We watched him for a good 20 minutes and seriously could have watched even longer.  AMAZING!  

Perv.  HAHA!

Our tent was just steps from the water.  We worried we wouldn't be able to sleep without our white noise, but the waves subbed in quite nicely.  Heaven on earth.

SO hard saying goodbye to our camp, our friends, this water, this entire experience, this island... we can only hope that someday we will be able to return for Round Two!

SO glad to get back home to the kids though!  YOU 3 ARE MY EVERYTHING!!!


Saturday, October 22, 2016

We've got answers!

9.30.16  ~  Microcephaly Awareness Day with my homegirls

I am embarrassed that it has been MONTHS since I last updated my blog.  You guys know me well enough by now to know that when large amounts of time passes between posts, it usually means that shit is goin' down.  And suffice it to say, that's accurate.  Much of it has been positive and fun! See list below for the deets...

  1. Claire turned 15 (HOW CAN THIS BE?!?!??!)!!!
  2. We watched Cal finish up/kick ass during his very last AAU summer basketball season with awesome trips all over the Midwest with some of our favorite families.
  3. We witnessed Cal's all-star team win MAYB Nationals on a last second shot which actually made the SportsCenter Top 10!!! (CLICK HERE to view it -- our boy is #15 in the far left corner spotted up to shoot a 3 if needed.)
  4. We started the process of Whole Exome Sequencing (WES) genetic testing for our girls through two separate labs -- one in Boston, and one in Kansas City.
  5. We took a quick, action-packed trip to Colorado with my very favorite people (that may or may not have resulted in Yours Truly contracting Norovirus and needing to get an IV at the hospital).
  6. We cheered our girls on as they both continued to progress developmentally!
  7. We took on a minor house updating project/remodel which involved a new stone fireplace/bar area.
  8. Our girls got some interesting, helpful results from a cardiology appointment.
  9. Our baby boy (He will ALWAYS be my baby boy!!!!!  Is that wrong?!?!?!) started his senior year of high school/was a Fall Homecoming King candidate/took part of his senior pictures already.
  10. We rocked yellow on Microcephaly Awareness Day on September 30th!
  11. We took in a local hockey game with our besties thanks to Mrs. Pocket's nursing agency!
  12. After the game, I got to hear Lola tell me ALL ABOUT why she DID NOT want to leave her BFF's & the game!  MY GIRL COMMUNICATED WITH ME!  Click HERE to listen to LOLA'S SWEETEST LITTLE VOICE! (When redirected to that page, click the PLAY button in the top right corner.)
  13. We did my favorite interview EVER with the coolest people EVER & when I get an air date, I will post it here because I am sooooo excited to see it!!!
Life is SO.  FREAKIN'. GOOD!

But sometimes shit happens, too. Seriously, this last week has been the polar opposite of stellar. Last weekend, our A/C went out during a week when Kansas set record high temps for the month of October. Of course, fixing the problem would prove to be just as expensive as buying a new unit, so cue up the iPhone money-with-wings emoji 27 times followed by the purple angry devil one, the middle finger for emphasis, then one-tear-sad-face and lastly, tears-streaming-down-sad-face emoji then possibly the bullshit, horrible, unacceptable, pistol-replacement green water gun + X-eyes emoji.  Somebody stop me!  (And did I type "unit" up there?!?! HA!)  Due to having to leave the windows open because of said record temps, our sensitive Lola reacted to the many allergens in the air which floated in on 40+ mph gusts over two straight days, and she was on oxygen and felt pretty miserable.  She is on the mend though after taking some homeopathic allergy remedies & using some allergy-busting Young Living essential oils.  I am grateful for guidance & squeezed-in appointments from our chiropractor/applied kinesiologist, because Mrs. Pocket is officially off oxygen just 2 days after going on it & basically back to her "normal."  WHEW.

As if that wasn't enough drama, our whippet, Romeo, had an episode yesterday where he fainted and his heart briefly stopped after fence fighting another dog.  Scott happened to be out there with him when it happened, he picked him up, told him to stay with us, and carried him into the house, where he finally came to. We are pretty sure this is related to his heart murmur and the severe bladder infection he has been fighting for the past several days, as the vet ran countless tests (once again, cue flying money emoji x 1,000,000 that I would gladly spend over & over to be sure my babies are OK!!!!!) and the results of each test were NORMAL.  Thank you, 8 pound, 6 ounce, newborn baby Jesus.  I am learning to not just hate these wild bumps in the road but to view them as little reminders of exactly how fragile life really is and how important it is to enjoy every precious moment we have here on this gorgeous, spinning planet.  I just wish I didn't have to worry so damn much when my babies get sick.

October 20, 2016  ~  Lola, Bok & Nurse Romeo

In true roller coaster fashion, on Monday, I got perhaps the best news of the year!  For fifteen years, no one has been able to give us ANY answers genetically as to what particular gene(s) defects the girls possess.  We started genetic testing shortly after Claire's birth back in 2001.  When she was three months old, we flew to Chicago for further genetic information/testing.  We also submitted saliva samples after Lola was born to a researcher in the UK for yet even more genetic testing.  All of those tests yielded ZERO ANSWERS.  In June of this year, we felt compelled to begin our quest for answers once again.  We knew the research had advanced since we'd last tested, and we also wanted to have answers for Cal so that someday when he wanted to have children, he would know if he was a carrier like we were.  We knew it was a long shot, but we decided to submit blood samples to both labs.  We sent blood samples from all five of us to Boston for testing.  We also gave blood from Scott, the girls & me to a genetics lab in Kansas City.  We crossed our fingers that we'd find something out, but honestly, we weren't sure we were meant to know.

On Monday of this week, I got a call from Genetics in Kansas City saying they had a diagnosis.  I almost couldn't catch my breath.  A DIAGNOSIS, y'all!!!  Should I say it a third time?  THEY HAD ANSWERS!!!!!!!  They told me they'd figure this whole thing out, and THEY FREAKIN' DELIVERED.

Scott & I were found to be carriers of this gene defect (it is an Autosomal Recessive gene, resulting in a 25% chance of this occurring each pregnancy, as we suspected), and both girls presented with the ASNS gene for Asparagine Synthetase Deficiency.  It apparently causes most all of the girls' diagnoses, and the one picture I was able to see of another affected child could have passed for a Middle Eastern, male version of Claire at age 4.  The newborn baby picture looked IDENTICAL to my girlies' noggins/faces/chins/ears/head shapes!  This appears to be what we have been searching for all these years...

I will be curious to hear if the other lab in Boston confirms this result and/or finds anything else. It certainly feels good to know more, but it also feels a bit scary.  There are 12 known cases of this in the world, though there are probably others who are still undiagnosed as our girls were prior to Monday.  I am not aware of any other cases in the U.S.  I read online the incidence is <1/1,000,000 worldwide.  My girls are rare, yo.  I already knew that, but holy shit.

I read that ASNS typically involves cerebral atrophy and that it is progressive. That scares the fuck out of me.  While I know the girls' prognoses have always been grim, I have become the queen of pushing it out of my mind -- sometimes many times a day -- because I am unable to process this harsh reality without it completely shattering me on a soul-level.  I want to believe my girls are an exception to this rule because their heads are growing still & their development is progressing. Surely this cannot be a sign of atrophy or degeneration.  I will hold out hope that they are setting a new standard for this diagnosis & that they will be giving hope to other families who are diagnosed with this condition down the road.  My online research found a family with 3 affected individuals with ASNS who lived into "the third decade of life."  That gave me hope.  Hope is literally ALL I NEED at this point.  It is all I have EVER wanted & needed since day one.

We have a conference call next week with our team at Children's Mercy Genetics Department to learn more about the specifics of this condition and to answer our many questions at length. I am both giddy and nervous, all at the same time.  A big thank you to Dr. Amudhavalli, Laura, and the entire Genetics Staff at CMH for giving us something we have sought for MANY years and feared we'd never find... answers.  It truly means SO MUCH.


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.

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