Wednesday, November 27, 2013

The Dream That Brought Me Full Circle

OK, so I had a dream last night.

If you lived in Da' Hooligan House, you would know that this statement, made by Yours Truly, is met 100% of the time with comments such as, "Here we go..." or "Oh dear Lord in Heaven, what NOW?!?!" or "Pull up a chair, kids; this is gonna get ugly."  W. T. F!  I'm happy to be the source of my family's demented entertainment, but at least give me some props for a job well done here.  It takes sheer skill to dream the shit I dream!!!  Jeez.

No, last night's dream was loaded with good stuff.  Not "good" good like my dream the other night where I made out hard with Matthew McConaughey and I'm not even remotely attracted to him but I still really enjoyed it and hoped I wouldn't wake up till like 3:45 pm the next day so I could keep enjoying him  his fine-ass body  the dream more than you could ever imagine for even longer. Oops, did I say that out loud?!?!  No, it was "good" good in the feel good sense.  Here's what happened...

OK, so in my dream, my Mom & I went to workout at this random place with a bunch of mats and stations and I've never, ever in my life been to or seen a place like this in existence.  But in my dream, it was where we went & what we did, and we were rockin' that crappy workout like a couple of bosses.  Interestingly enough, we took Claire & Lola with us so they could lay on the mats by us while we got after it.  So there we were sweatin' out to Irene Cara's "What a Feeling" sportin' leotards and legwarmers (OK, that part might be embellished) when all of a sudden Claire morphs into a typical child who can run, play, laugh and talk.  Oh, and she's not teeny tiny anymore.

Let me back up for a minute.  I will never forget the heart-wrenching pain associated with this exact dream for probably the first FIVE+ YEARS after having Claire.  It was so very debilitating.  I would literally wake up crying happy tears initially and then tears of sadness and disappointment after that.  I would want to go back to sleep and restart the dream and stay there forever so I could finally see my baby doing what I thought she was supposed to be doing -- what I LONGED for her to be doing -- what I assumed would ultimately make her (and selfishly me) happy.  It would set off a downward spiral of emotions within me that would carry over for days.  It would result in MANY deep, sorrowful conversations with anyone who would listen about the meaning of life, happiness, joy, and how the fuck I was supposed to FIND all that if my baby couldn't even smile at me. Looking back, I know grieving was what I needed.  I needed to let myself feel it all, however I could, so I could come full circle and realize that happiness is a choice and it was within my grasp.  I didn't need to look far to realize that Claire was ALREADY happy with her life.  She was already light years beyond where I would probably EVER be.

I stopped having that dream where my babies were healed, and I'm not really sure why.  Maybe God knew I didn't need to have it anymore because it didn't serve me.  (I'm not gonna lie, just typing that sentence made me cry.)  Or maybe something within me resolved enough that it would no longer be helpful.  Or maybe it was just too painful all around.  I don't know... but to have had it last night definitely got my attention and I wondered how I would react upon waking.  And today, I am elated to report that my mood was COMPLETELY different post-dream.  Here's the rest of the story...

OK, so it was immediately "abort mission" workout-wise when my baby got up and began wreaking havoc on all those damn mats.  Mom stayed with Lola, and I began chasing Claire around as she ran wildly, waved her arms, shrieked, giggled, and basically did all those things I SO ached for her to do the past 12 years.  Immediately I was back in "Mom-of-Cal-as-a-wild-toddler mode", where I was trying to spare everyone else's feelings of annoyance and frustration with that out-of-control kid vs. realizing that OMFG, CLAIRE IS UP & RUNNING AND HOW THE HELL IS THIS POSSIBLE?!?!?  I was frantically following her, trying to lasso her in, calm her down, and make sense of all this when she crossed the line.  I don't recall exactly what she did, but it was naughty, and I sat her down on my lap in time out.  I remember saying, "Claire, honey, that is NOT OK.  You are in time out to think about it, and when you are ready to make good decisions, I will let you down."  She sat very still on my lap and barely moved, almost as if she was thinking about her actions.  When I said time was up, she happily hopped down and began running again.  Her smile radiated like you would not believe.  It made ME smile.  I was in complete awe.

Instantly Cal was present and also enjoying the moment, following Claire around as she tornadoed her way through this gym.  At one point, he grabbed her around her waist from behind to stop her, and it felt like slow motion as I watched the scene I had waited for my entire life unfold before me.  I saw my children interacting as typical siblings.  It was so beautiful, perfect & natural.  I watched them both in hysterics, basically wrestling one another, completely enveloped in nothing but PURE JOY.  I could not help but smile and laugh with them at this moment -- this amazing, surreal, unbelievable moment.

Cal continued his struggle to hold Claire still, and she grew angrier as he restrained her.  She was flapping her arms around, swinging them at whoever she could, and screaming out in anger because she JUST. NEEDED. TO. RUN.  Cal was just trying to help, and she wasn't having it.  I started to tell Cal to let her go when Claire broke free & screamed out at the top of her lungs, "FUCK OFF!!!!!!!!"  The dream immediately ended.

I woke up smiling.  That's my girl.


Monday, October 28, 2013

Much Obliged Monday?!

I have seriously sucked the big one it up lately with my Thankful Thursday posts, so to make up for missing a few, here's a bonus Monday blog!

Today I am thankful for the kindness of others.

First off, I want to give a HUGE thank you to Grace S. for sending these darling, crocheted hairbows for Claire & Lola!!!  She is a whiz at all things crocheted, including hats, costumes & headbands to die for.  I ordered a super cute, deep purple crocheted headband with a crocheted flower, & it was not only incredibly well made, but it was beautiful, soft & quickly shipped to me for a VERY reasonable price.  Grace & I are Instagram buddies, & my girlies not only send big, wet, slobbery kisses to Grace but also to her precious son, Jayden.  For more pictures and information about Grace's crocheting, check out her Instagram profiles -- @jaydensmommyg or @jaydensmommyg_closet.  You can also visit her Etsy shop by clicking HERE; she is in the process of updating that as we speak!  Thanks again, Grace!!!

OMG, I loooooove her SO.  MUCH.

Workin' the classic "Thinker" pose like a boss

A few weeks ago, I opened my mailbox to find a box.  Inside was the SWEETEST note & two incredibly beautiful, handmade quilts for Claire & Lola.  I was blown away as I unwrapped each one, only to see that both were PERFECTLY suited to each of our girls.  I literally teared up as I studied them, floored by the intricate details, gorgeous color schemes & awesome designs.  I have been slightly obsessed with these since they arrived, and I'm not ashamed to admit that I too have snuggled under them several times.  Sherry & Mia knew my girls would love these, and they were right.  A HUGE thank you to Wendy the Quilt Master & to Sherry and Mia for being so loving and thoughtful.  We are touched beyond measure.

There was NO doubt in our minds that the owls were PERFECT for Miss Claire!
Look whoooooo loves to be wrapped up in her new quilt!  OK, that was bad.  But it's SO true.  

And for Lola, no other theme could be more perfect than...

Cupcakes, chocolate & cherries!
Our little sweetheart!

Pissed off she can't subsist solely on chocolate and cupcakes for her real diet.  You & me both, sister.

Thank you SO. VERY. MUCH. for the beautiful quilts, Sherry, Mia & Wendy.  MUCH LOVE from Claire, Lola & me!!! (Hopefully after seeing this post you can provide a link to where others can buy these darling quilts -- HINT, HINT!  Thanks!!!)

"Have you had a kindness shown?  Pass it on; 'twas not given for thee alone, pass it on; let it travel down the years, let it wipe another's tears, 'til in Heaven the deed appears - pass it on." ~Henry Burton


Thursday, October 03, 2013

Why do I do this to myself?!?!?

No seriously, WHY???  I know ahead of time EXACTLY what the end result is gonna be, yet I go & do it ANYWAY.  WTF is wrong with me!!!  When will I learn?!  Just because I'm 12+ years into "this life" doesn't mean I don't still have rough days... I don't still feel super vulnerable out of the blue due to one single, tiny trigger... I don't still have days I feel defeated... I don't still question whether I did/am doing ENOUGH to try to help them be all they can be... I don't still cling to the hope that maybe someday we will eventually see true social smiles or a hand that can begin to grasp or hear a tiny giggle.  SO many emotions are wrapped up in each minute of each day of each year.

But then immediately I feel compelled to remind you all that we live in JOY 99% of the time. Because I worry that YOU will worry about ME if you think I'm sad/down/pissed/depressed/bummed/bitching.  I need to get over that shit.  But no seriously, fuck that 1%.  I mean it.  It can bite me.

OK, so a few days ago, I was visiting with Tracey (Mrs. Pocket's bestie!), one of our babysitters-who-has-become-family (who we also happened to infect with the clap herpes chickenpox a year ago -- it's a wonder she still WANTS to be part of this fam! HA!), and we got to talking about how much -- if any -- the girls' heads had grown since birth.  Immediately I was reminded of a website I'd found years ago when Claire was little.  It is a Head Circumference Calculator where you enter your child's sex, age, & head circumference, and it tells you all sorts of bad news your child's head circumference percentile.

When Claire was very young, I pretty much thought that head growth impacted EVERYTHING.  If it grew 1/4 cm, I KNEW.  I measured it obsessively.  I stole one of those already-in-a-circle-with-inches-and-centimeters-shown head measuring thingies from my pediatrician's office during one of our many weight checks.  Whenever Claire would see me comin' with that bad boy, she'd arch in disgust. I would cheer if her head grew, and I was sure that bigger head = bigger brain = more ability = happier Claire = I was doing enough. God, I was so naive.

The interesting part was that as time went on, Claire's head sort of stopped growing. Measuring and seeing gains wasn't happenin' anymore, and I found that doing so just disappointed me & made me feel sad for Claire (and selfishly, myself). I didn't want to live that way. I didn't want my happiness to hinge on Claire's progress (or lack thereof) in any area. Years passed between head measurements. It no longer mattered whatsoever.

A few years ago, another Mom asked me for that website.  I dug it out, and remembering how much all of that used to matter, I measured Claire's & now Lola's head once again.  I can tell you without thought or hesitation what the girls' heads measured both at birth and now.  Just like my birth date, social security number or address.  It's become a part of me.  I remember being super disappointed by the results I saw on that website a few years ago when I entered the girls' info. However, I almost felt emotionally detached from what I saw -- self-protection maybe.

I have randomly measured the girls' heads over the past few years for headbands or hats, but again, no emotions registered with me about what I saw, because head size is just such a *tiny* part (pun intended!) of who Claire & Lola are.

I don't know whether to blame hormones or PMS or Mother F'ing Nature who can't make up her mind about which season it is, but a few days ago when talking to Tracey about whether the girls' heads had grown, suffice it to say... I relapsed.  Oh yes.  I had a mini panic attack when I saw how many standard deviations (SD) below the norm my girls' heads NOW fell.  It was bad enough a few years ago, but it has gotten worse.  Claire dropped another SD, and Lola dropped 4.  WHAT THE HELLLLLLLL.

WHY?  Why are they dropping?  Why aren't they still growing?  Why ARE THEY so small?  Why did I even remeasure?  And why did I have to go plug their numbers into that damn website?!?!?

Here is what I saw...

Claire  --  <1 percentile & -13.1 SD below the norm

Lola  --  <1 percentile & -16.7 SD below the norm

If it's any consolation, I checked my own head size just to see if it was skewed, & I was in the 61st percentile. Many years ago we checked Scott's head size at the neurologist's office, and he was +4 SD.  Go figure.

I look at things as 'Everything is meant to be.'  ~ Lil Wayne

And it SO IS.  I know that.  I just wish I could always remember.

PERFECTION.  Without a doubt.

Monday, September 30, 2013


Today we wore yellow.

We wore yellow for Claire, Lola, & all their homies with microcephaly.  Each year on 9.30, we celebrate Microcephaly Awareness Day.  Tonight we met up with two families in our area to honor our girls & all those who have microcephaly around the world.  It was a fabulous night.

Da Hooligans
(Ignore their puffy, red eyes -- seasonal fall allergies in Kansas are a bitch!)
Cal & Anika
It was soooo presh to see her reach out for him multiple times.  He is so amazed by & in love with her.
Cal, Anika & Angelina
Gentry gettin' loves from Anika
Lola, Cal, Claire, Mason, Anika (in motion!) & Braelynn
PS -- Braelynn is *SO* not shy.  She got this party turnt up moments later & had us rolling as she zoomed in & out of the arcade doors Mach 5, dodging all those in her path!  Pretty sure she & I could do some damage together.  Ha!
The gang's all here!
Claire & Daddy
Lola & me

"Share our similarities, celebrate our differences."  ~ M. Scott Peck


Thursday, September 19, 2013

Thankful Thursday

Today I am thankful for Romeo & Cash, our two whippets (whippet good!).  Every day, without fail, they wake up, come out of their crates, and shower me with love. They dote over all of us (though especially the girls, as if they just KNOW), they follow me around the house, they hang around and watch me pee shower (Man, what perverts!) fix dinner, and they literally almost smile a human smile whenever they see me. The second I sit down to feed Lola, they are right next to us, cuddled in, and that is where they stay until I get up. We are connected -- the dogs & me. Scott laughs at me because I tell him that Romeo is my soulmate.  Even I have to remind myself I didn't pass him through my own vagina, because he is sooooo much a part of me! And Cash, too, has wormed his way into my heart since day one. I love these two yayhoos. They make my life so full.

Engaging in a possible make-out session doggie horseplay on the couch... a daily occurrence. 

"I'll lick your eyeball..."
"... if you lick me in a special place in return!"
And yes, we support gay dog marriage in this household.
Romeo (AKA Capricorn -- don't even ask how he got that nickname)
Cash & Lola = Besties
Cash (AKA Pat - yes, we have issues)
Watching their boy finish up a ski

And to Cocoa, Halley & Pre, whom I've owned, loved & lost, I will never forget how deeply you touched my life forever & always.


Thursday, September 12, 2013

Thankful Thursday

Today I am thankful for Claire & Lola's many therapists who work (more than) wholeheartedly to help both girls reach their utmost potentials.  Not only are they each skilled & knowledgeable within their own fields, but they also CARE. Having been on this journey for 12+ years now, I know that can be hard to find. So to Angela, Donna, Kristin, Stacey, & Joli (and all of the other fabulous therapists before you) -- THANK YOU.  We love you guys!!!

Angela (PT) & Claire
This is THE CALMEST I have seen Claire on her tummy in more than five years.  PRECIOUS.

The mighty warrior has awoken... and she is NOT amused still being on her stomach.
(But check out her stellar form pushing up on her arms!!!  And ignore her crossed legs arched up *off the floor* in the ever-difficult reverse rainbow pose.  My girl's got skillz, yo!)
Do *NOT* make me hold this jinglebell, a-hole.  Gahhhh, it's SEPTEMBER, for Santa's sake!
Obviously NOT a Star Wars fan...
Donna helped me make these guys, and Stacey wants me to hold them, but they won't get the F outta my face!
Fine, I'll just eat them...
Like all women, Lola loves Cool J a man in uniform.  Can't stop staring at his hose great smile!
This is my FAVORITE picture of Lola recently because you can actually see her problem solve how to move the teacher down & out of her own face.  I have not witnessed her consciously moving her arms before until this moment.  She was able to PUSH her left arm down & out away from her, turning it in & moving the teacher puppet down!  She finished this action with a tiny grin!  SO.  PROUD.
"Unity is strength... when there is teamwork and collaboration, wonderful things can be achieved." ~Mattie Stepanek

Thursday, September 05, 2013

Thankful Thursday

This summer quite possibly might have been one of our busiest on record.  We have traveled multiple times each month, which basically means I spent most of my time packing & unpacking (or refusing to unpack since I'm just gonna have to pack that shit again in a few days so I struggle through working out of suitcases in every room of the house & bitching because of it) and doing laundry.  Yep, I'm back, bitchezzzz.  Run-on sentences and all.  I am going to try to make a conscious effort to post more often.  I know, I know... I've said this before.  And I think I've figured out why I haven't been able to deliver on this promise.  


I don't know why, but in my head, it's like each & every post has to be off-the-charts moving/f'ing hilarious/touching/uplifting/full of messages about life & how we cope & find our joy & blah blah blah.  I don't know... I don't want to disappoint myself, not do my family justice, bore my readers, talk about the same stuff over & over, etc.  Pretty sure I need to get over it/myself/these feelings & just fucking WRITE.  I always feel so happy & fulfilled when I do.  So if you see me bein' all absent & shit, remind me of this, please.  You guys rock so hard.

(And WTF is up with my potty mouth?!?!?  It's like I've got 1.5 months worth of obscenities all pent up, waiting to burst out & burn through your retinas.  And for this, I apologize.  Sort of.  But not really.  :)

I'm thinking I should do a Thankful Thursday post every week because God knows I have SO much to be thankful for, and I would far rather focus on that than anything else.

This Thursday, I am thankful for those of you who choose to put up with my profanity  love me despite my stories about sharting  follow The Hooligan 5.  I wanted to give a shout-out & a great big thank you to a few special people today whose incredible generosity touched my heart greatly.

First off, I was elated to see that Lauren P. from Cali sent me five absolutely friggin' awesome g-tube pads for Claire. Skulls + pink bows + sparkle = badass perfection! Claire's been rockin' them in honor of her homegirl, Kendall (Lauren's daughter who also has a g-tube) & her twin sister, Khloe.  Much love & thanks from me and my "Mimi!"

The same day I received the g-tube pads, an anonymous reader sent me following handwritten note:

Made.  My.  Day.
THANK YOU for your kindness.  It really means SO MUCH.

During the same time frame, another reader (Julie F. from WI, you know who you are!!!) contacted me about crocheting some hats for our girls. I have a bit of a hat obsession which is complicated a WEE BIT by the fact that my girls have very tiny, irregular-shaped heads.  Julie was sweet enough to ask me specific measurements & custom make hats to fit both girls.  She also threw in matching custom-sized, crocheted leg warmers (pics to come this fall!) & handmade hair bows. Our girls feel so special & spoiled!!!  Please check out Julie's Facebook Page when you get a chance -- she is so talented & awesome to work with. Prepare to drool over her DARLING hats below...

I am obsessed with this picture of Claire... she looks SO twelve & SOOO beautiful.
SUPER embarrassed she needs a chin strap... ha!

Julie, you have outdone yourself, and we SO appreciate you taking the time to make these precious gifts for Claire & Lola.  THANK YOU.  The girlies send you big, wet, slobbery kisses!!!

"I would maintain that thanks are the highest form of thought, and that gratitude is happiness doubled by wonder."
~ Gilbert K. Chesterton

I am so very grateful for the love & support I get from everyone who follows our family and this blog.  I cannot thank you enough for the kind words, thoughtful messages, and all the positive mojo you send our way on a daily basis.  

Related Posts Plugin for WordPress, Blogger...