Saturday, November 15, 2014

The Struggle

"Travel can be one of the most rewarding forms of introspection." ~Lawrence Durrell

Trunk Bay, St. John, USVI

As many of you know from following us on Facebook, Scott & I were able to take a trip to the Caribbean this month by ourselves.  This is only the second time that we have done so since our honeymoon back in 1997.  We took our first trip alone together last year about this same time, which I did not publicize for reasons I will explain later.  We went 16.5 years without taking one single trip away, just the two of us.  I have no regrets about this whatsoever.  The time was just not right until last year.  I was 100% in Mommy Mode that first 16 years... literally knowing that where I wanted to be was AT HOME with our kids.  I didn't think it was necessary or important for me to be leaving my kids for any length of time to get away with my husband.  It felt selfish and like a luxury I didn't need.  We chose to have three kids & even though our situation is different than most, we still shouldn't "need" that type of break.  Not to mention that there was physically NO WAY to get away even if we wanted to.  We didn't have babysitters, nurses or anyone else who would want to take up residence at Da Hooligan House for a week, get no sleep, care 24/7 for our 3 kiddos, and literally run *my life* while I gallivanted around the islands. The whole idea seemed more like a dream than anything.  

It wasn't until early last year that Scott & I looked at each other in our unbelievably sleep-deprived frustration & cried, "THIS YEAR WE ARE GOING SOMEWHERE.  JUST US.  NO QUESTION. LET'S BOOK THE MOTHERFUCKIN' TRIP BEFORE WE CHANGE OUR MINDS!!!!!!!"  And we did.  And it was wonderful.  And it was possible because we now have an amazing "team" in place to help us with the girls both day & night. I don't know what I'd do without them... they are FAMILY & we are SOOOOOO blessed that they are part of our lives!!!! 

It was so wonderful last year that we booked another trip this year.  We returned earlier this week from 10 days in the Virgin Islands.  Just us.  Alone.  For only the third time in 17+ years of marriage.


You might think this is where the story ends, with me sharing breathtaking beach pictures & recounting tales of wild nights in paradise as Gwen & Scott finally unwind after years of being cooped up in boring old, landlocked Kansas.  But you would be wrong.

Please understand -- and I have no idea why I feel the need to preface this with a disclaimer, but I just don't want anyone thinking I'm a prima donna or some ungrateful bitch who doesn't realize the gifts that I have both at home & while away travelling -- but I LOVED EVERY SECOND OF BEING GONE.  I loved being in one of the most beautiful places on earth.  I loved the warm weather (unlike the wind chill of 1 degree that we came home to!), sunny skies, palm trees, & pristine beaches.  I loved the one-on-one time I had with my husband.  I loved how free I felt being able to go to bed whenever I wanted or get out of the car without a 15 minute scramble to be sure I didn't forget burp rags or diapers or wipes or the spoon or bib or baby food or back-up outfits in case one of the girls pees/pukes on their clothes.  I loved having no responsibilities.  I loved feeling like newlyweds again.  I loved being able to do things we couldn't do in Kansas.  I loved being able to do things we are not able to do when our kids are with us (get your minds out of the gutters, ya' pervs! OK, maybe not.  I might mean that too!  LOL).  I loved having tropical drinks with my dinner.  I loved jamming out to reggae & island beats in our rented Jeep on a faraway island, exploring to our heart's content without having to worry about anyone else's needs but our own.  I loved the rush of snorkeling for six hours straight with stingrays, sea turtles, tropical fish, squid, octopus, huge tarpon, and 2 sharks!!!  I loved surfing in the most turquoise water in the pouring rain and getting up on the first try.  I loved sleeping in.  I loved sleeping in general!  I loved relaxing swings in the hammock overlooking the islands.  I loved being able to get ready to go out for the night in 20 minutes.  I loved dancing in the pouring rain in the middle of the street BECAUSE I COULD.  I loved EVERY MOMENT I spent there. Wholeheartedly.  Like every single day was one of the best days of my life, next to my wedding day & the three days my children were born.  I can barely put it into words what this trip -- these two trips -- have meant to me without tearing up because it was so beautiful & perfect & NEEDED, start to finish. (Too late... tears already rolling...can barely see the screen)

And therein lies the struggle... Knowing I needed this trip more than just about anything else in life, but feeling SO FUCKING POWERLESS the entire time I was there because of how intensely I missed my life here. Not to mention the immeasurable guilt I felt for LIKING all of the things I mentioned above, most of which involved me feeling FREEDOM from the stressors of life here at home.  What kind of mother am I for ENJOYING being away from my kids?  For wanting to stay for ten days, thousands of miles away from my kids while countless others have to pick up the slack for me at home?  For 6 days not being enough this time?  For being so disconnected from my kids - - they are my WORLD! - - and LIKING how that feels because I have zero responsibilities?  Do you know what a betrayal that feels like to my kids??? 

I almost didn't want to like it as much as I did. I half expected we'd go last year & it would be "enough" to tide us over for another 5+ years.  Why do you think I didn't publicize that we went last year?  BECAUSE I WAS EMBARRASSED WE WERE LEAVING THE GIRLS.  There, I said it.  It hurt me then & it hurts me still to admit that we needed this break.  It hurts me to admit how hard it is sometimes to care for two children with special needs.  It hurts me to admit that others can care for the girls just like I can.  It hurts me that I felt enough disconnect with my husband to need this trip.  It hurts me that I felt some burnout about being a caregiver 24/7.  It hurts me to admit that we now have 7 nights a week of nursing care for Lola & that I couldn't survive one more day getting less than 2 hours of sleep a night.  It hurts me to admit that part of the reason I feel guilty about leaving the girls especially is because I don't want to waste precious time I do have with them while they are still here.

But WHY??? Why are these things so difficult for me to say and accept?  And why am I beating myself up over wanting a break from my life?  (But promise me you guys won't ever for one second think that I don't completely love my life!!!!!  Because I do.  But I just cannot understand why if I love my life so much - as I do! - that I would even need a break from it at all?!?!?  I wish I could just admit that life is hard sometimes, breaks are OK because they recharge me, & I am no less of a Mom for wanting to get away once a year. Damn this Mommy guilt!!!!)

I feel a sense of weight lifting off my shoulders as I type this.  (Wish that weight was lifting off my thighs or ass instead, dammit!)  It just feels so good to process through this & really to be blogging at all, as I pretty much took a two month hiatus so I wouldn't have to "go there" with all these emotions.  I just couldn't... or I likely would've cashed in that trip insurance & stayed the F home! Trust me, I was looking for reasons to not go!  This internal guilt shit is for the birds!!!!

(For the record, the girls & Cal had ZERO problems while I was gone, aside from their usual antics. :)

I cannot tell you how good it feels to be back home.  I have so missed THIS.  

Will someone tell me why certain 15 year old boys refuse to participate in selfies with their Mamas?!?!?
Me, Cal & Cam at the WSU game last night (Only 2 of us apparently give a shit!!!  LOL)

Stand up, baby girl!  I AM SO PROUD OF YOU, CLAIRE!!!!!!!

Reunited

"A man travels the world over in search of what he
needs and returns home to find it." ~George A. Moore

xo

Friday, September 12, 2014

Speechless

Behold one of the most brilliant things I have ever seen my sweet Claire accomplish...


Yes.  OH YES!  Our girl is working on kneeling!!!  I cannot believe my very eyes.  Claire continues to amaze all of us with her desire to challenge herself, to work through her increased tone/cerebral palsy, to use her body/disability to her advantage!  

I am speechless.  Yes, I know that is not a common occurrence, but today I remain just that -- SPEECHLESS.

I am so incredibly proud of you, baby girl.  You are my heart.

"That some achieve great success, is proof to all
that others can achieve it as well."
~Abraham Lincoln

Never EVER give up.  We waited 13 years for this!

xo

Tuesday, August 19, 2014

I Will Catch You

Claire & me  ~  August 2014

A few days ago, I had a minor freak-out moment when I was trying to get a picture of Claire on the couch. Due to her high tone, her legs cross/scissor, and often times, her legs are straight out in an X formation. It's pretty rad looking, but the problem is that the tightness of her muscles have pulled so hard on her hips that they are now dislocated. The good news is that she is not in any pain from this. It probably happened so gradually that she didn't even notice. We monitor her hips/tone/body closely & work with our awesome PT twice weekly to help her with this issue. There are more drastic medical interventions which may or may not help this problem long-term such as surgery, medicines, etc. However, we can never reverse her cerebral palsy or stop her hypertonicity completely. Due to Claire's extreme sensitivities, we are not able to anesthetize her. Surgery is out of the question. Ditto harsh medicines & Botox -- our tiny girl just cannot handle it.

A few months ago we had a consult with a fabulous orthopedic specialist from Kansas City whom we adored. He too agreed that surgery for her hips or spine could be fatal. His exact words to me were that he was "terrified" to put her under for fear of losing her. Not to mention that some kids I have known who have had hip surgery had to have the surgery repeated due to the fact that the tone was never corrected. The muscles continued to pull on the hips, thus creating yet ANOTHER dislocation. I simply cannot take that risk with Claire..

(And I won't even go into details about how much it shatters me that Lola's hips are ALSO dislocated in the same damn way. Fuck these orthopedic issues. For real. Don't even get me started on the kyphosis/scoliosis shit either. Please know that I love every single dislocation, every "imperfect" curve of your bodies, sweet girls o' mine.)

So back to the story... I was trying to sit Claire up for a picture, and she had one leg bent and one leg straight. I tried to wedge her against the arm of the couch that would support her in this position, and she just arched out of it & buried her head, destroying the fabulously cute hairstyle I was intending to photograph in the first place.

So... I restyled her hair, repositioned her this time in the center of the couch, sort of wedging her adorable little teensy head between the two cushions. She got pissed as hell and tried to arch some more, but I kept her contained with bribes & singing some Lil Wayne for her. (Pretty sure the girls love him because they think he's "their people." Hint: keyword is "Lil." LOL!) I slowly scooched (skooched? skuched?! FRICK! Spellcheck highlighted all 3 words, dammit! Don't F with me!!!) her slightly to the center of the cushion thinking this might have a better result because then her head wouldn't be jammed between two cushions, thus giving her the illusion that she can arch back FURTHER. (Did I seriously just use "thus" a second time in this blog post? WTF! Does it make me sound like a badass?!) This diva is hard to outsmart, but I'll be damned if I was gonna back down!

As soon as I sat her in the middle of the couch in the center of the cushion, she actually relaxed & seemed happier there. I grabbed my iPhone like a ninja & flicked the camera button to start snapping, knowing full well that my photo shoot was gonna be a quickie. As soon as I honed in, focused & was ready to snap, I see Claire starting to literally fall to the side. I throw the phone down & grab her before she face plants on the couch. Claire's eyes widened but she stayed in that same position as she tipped over. I sat her back up, took aim again with my camera, and yet again, Claire's nose made a beeline for the seat of the couch.

I watched in disbelief as yet a second time, she didn't seem too bothered by this. I don't know if she reacted that way because she's a daredevil, because she trusts me, or because that was her initial intention - to FALL (AKA - get out of Mommy's Picture Time!). I once again caught her before she "fell" from a sitting position onto her side/face just inches below.

Now, you KNOW I love my girls as they are, where they are, and even if they stayed at this developmental level for the rest of time, I would be PERFECTLY OK with that.  Not sure why I feel like I need to make that disclaimer every time I spew out a fear/concern/worry of mine, but I do. But I think what got me the most about her falling twice was how no attempt was made to catch herself. I am positive she knew she was falling -- her eyes were wide both times & she seemed startled -- but the thought that she was unable to put 2 + 2 together, extend her right arm, stabilize herself on the couch, & stay upright made me sad. I have seen some amazing progress in Claire during PT the past year or so, and maybe that is why I still have hope that someday something as minor as her using her arm appropriately could possibly happen. I don't know...

What I DO know is that my girl is happy. There is no doubt in my mind. I really need to just follow her lead and not "go there" worrying about why her brain doesn't allow her to do _____ or _____. Until then, I will be her eyes/hands/intuition... as best as I possibly can.  I just hope it's enough & I can continue to be all she needs me to be.

My beautiful Claire, I will GLADLY catch you every time you fall, EVERY SINGLE DAY, for the rest of your life if you need me to. I love you THAT MUCH. You are my heart.

Photo shoot was relocated to the beanbag, which was positioned safely on the floor.  Claire "rewarded" me with some classic, typical teenage "PLEEEEEEEEASE PUT THE DAMN CAMERA AWAY, MOTHERRRRRR!!!!" type glares.  OMG, I love this child.  SO MUCH.

“I love you without knowing how, or when, or from where. I love you straightforwardly, without complexities or pride; so I love you because I know no other way.”- Pablo Neruda

xo

Friday, July 25, 2014

Thirteen

13. 

How is it at all possible that my sweet Claire turns 13 today?!?! 

Our first year with Claire feels like yesterday.  It was cram-packed full of fear, little hope & worry.  I have not forgotten the exact words that were spoken to us when Claire was 3 months old... "She likely will not live to be 1 year old."  I remember feeling as if everything in my life were crumbling -- that my whole world, my reason for being, my future -- were all shattered.  I had so wanted a daughter.  I picked out the name "Claire" when *I* was 13.  I had this image of what my little girl would be like, what we'd do together, how I'd fix her hair & paint her toenails like mine & dress like twinkies & we'd be SO CLOSE & she would be spunky & funny & cute & perfect.  

And we were given just that.  In a very different package than we were expecting, yet no less special.

I am SO. GRATEFUL.


"You can either be a victim of the world or an adventurer in search of treasure.  It all depends on how you view your life."
~Paulo Coelho, Eleven Minutes


July 2014  ~  Sportin' her new 'do!

July 2014  ~  PT in the pool with Angela!

I look back now & realize all that I would never wish to be... as a mother, a wife, a friend, a person.  I love who Claire has made me become.  I love how she has united our family and shown us what really matters.  I love that she touches people -- total strangers -- without ever having spoken a word.  I love that her eyes speak volumes and her expressions convey more than any words ever could.  I am in awe of her strength -- oh, her amazing strength! -- it makes me want to be more & support others more & LOVE MORE.  I love her determination and her spirit.  Guys, my girl is working on standing & supporting herself in a crawling position!!!!!  I wasn't sure this was even possible.  I love that my girl took that "1 year maximum prognosis" and basically told those doctors to fuck off.  Don't think for one second that my annual "Claire is STILL defying your stupid-ass odds" letter won't be sent to that dick doctor today.  I love how my girl loves.  I love that her whole life is based on love & giving as much of it as she possibly can EVERY. SINGLE. DAY. because honestly, that is all any of us should ever strive to do.


"Love is pulling together against all odds."
~Smiley Blanton


Fall 2001  ~  Those eyes... they have always seen straight to my soul.  Then & now.  
Spring 2002  ~  This picture always makes me tear up, remembering how Claire's legs used to not scissor.
I loved her then & I love her even more now because despite her challenges, she still finds joy in all she does.
November 2002  ~  Claire being a "triplet" with her newborn twin cousins, Elisabeth & Christina
October 2003  ~  One of Claire's first smiles captured on film, at 2 years, 3 months of age.
I cannot even put into words how precious this moment was to all of us.  To FINALLY see emotion.  To FINALLY know our baby is happy & FINALLY be able to show us.  To have waited 2 extra years to see such a miracle, not knowing if that day would ever come.  To say this was one of the best days of my life would be an understatement.
November 2004  ~  Photo by Gavin Peters
January 2005  ~  Cal & Claire with Gran
November 2006  ~  I love these hooligans!
August 2008  ~  "Geek Chic" taken to a WHOLE 'nother level before it was even cool!
November 2010

Happy 13th Birthday, my Mimi.  You are my heart.  For always.

July 2014

xo

Thursday, July 10, 2014

Thankful Thursday

Today I am thankful for therapists who become family.

To those who are willing to put in the extra time, who let themselves get invested in my girls' lives, who listen to me vent, who share their own lives & experiences, who bring their well-behaved children to my house & show me that some kids don't even have to be taught how to find joy in spending time with someone who is different, who truly LOVE THEIR JOB and MY GIRLS and ME... THANK YOU!  You will never know how much this means to all of us.

Max (age 3), Angela & Claire (age 12)

My girl rockin' her crawling position today!

My heart just exploded into a million pieces seeing them together.


Besties!
Claire seriously LOVES Max.  And he just "gets her."



O.  M.  G.
Love this soooo much.





My dear, you are SO loved.

"What is family? They were the people who claimed you. In good, in bad, in parts or in whole, they were the ones who showed up, who stayed in there, regardless. It wasn't just about blood relations or shared chromosomes, but something wider, bigger." ~Sarah Dessen (Lock and Key)

xo

Tuesday, July 01, 2014

Bubbles!

Enjoy the girls in action in their therapy tub yesterday!  I SO love the expressiveness they show, the interest they take in one another, & how purposefully they respond to what we say to them!  They amaze me every. single. day.


"I am so fresh in soul and spirit that life gushes and bubbles around me in a thousand springs." ~Robert Schumann

xo

Thursday, June 19, 2014

Thankful Thursday

Today I am thankful for Claire & Lola's good health.

June 2014

This week we had the girls' yearly exams & went over recent bloodwork we had done (Dr. Allman, you are THE BEST!!!).  Both girls -- while not "normal" (PS -- WTF is normal again?!?!?) -- are doing very well & are quite healthy!  There were a few issues with the bloodwork, but honestly, I would expect that due to their diagnoses.  There were no glaring problems, and the issues of concern from last year have resolved to some degree. We will continue to monitor them yearly & watch for any trends.

Claire finally hit the 25 lb. mark (at damn near age 13)!!!!!!  We fought for EVERY. SINGLE. OUNCE with her (and Lolita, too), so this is a huge milestone! Our Polly Pocket is holding steady at 10 lb. now, up from 7 lb. back in the Fall of 2013. (And no, I did not discuss her low weight back then. Something about focusing on the negative just felt SO WRONG when there were still so many things going RIGHT. Oh, and yes, Claire WAS much larger than Lola when she was 8. NO CLUE WHY. Lola eats SO well! However, her tone is higher than Claire's & she sleeps less. Maybe she is part fairy/pixie/Tinkerbell?!) All I know is that it is SO NICE to finally see Lola sportin' some "chubby" cheeks and upper thigh padding (she gets that from her mother, dammit). PROGRESS on all fronts!

We don't even bother taking head circumference measurements anymore.  Yeah, fuck that.  Tiny heads are beauuuuutiful!

A HUGE thanks & big love to Missy, the best damn blood drawer/taker/vampire?! this side of the Mississippi!!! We love you for working so patiently with us & our girls!

Sit back & enjoy these pictures of the shit show blood draw... Claire was full of eye rolls & Lola was arching & grunting like a mofo.  GOOD TIMES!

CLAIRE:
DON'T TOUCH ME.  I will fart on you.

End stages of one eye roll caught on film...
Also, flexin' & tryin' to embarrass the rest of us with her pythons while simultaneously acting uninterested.
Well played, Claire.

Wait, what???  You're gonna draw blood from my armpit?  HOLY SHITBALLS!!!!!

Notice how I've ceased all blood flow to the aforementioned tortured region?!
This shit is too easy.

Wiggle that bastard needle around ALL YOU WANT but I refuse to emit one drop of blood.  I got this on lock.

Folks, we have a minor snafu here.  Apparently they are going to location #2.
One more stick & I'm gonna lose my shit.  Literally.

What the fucking fuck!!!!  Please kindly remove your pointy weapon NOW.  Please & thanks.  K bye.

Oh wait... this isn't so bad!  I'm just gonna drift off here for a minute.  You know, plot some evil under the guise of sleep.

LOLA:
The ONLY place we've successfully been able to draw blood from Lola was from her armpit.
(Hence the reason we tried there with Claire first...)  

Goooooooooooooooooooooooooooooooooooooooooal!
 We've got blood!

Does this blood loss make me look pale?!?!?!?!
Daddy says I'm not even "fair."  He says I'm CLEAR.  He can suck it.

I am SO outta here.  AMF!!!!!!!!!!!!!


xo
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