Peanut

"When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight."  ~ Kahlil Gibran

 

Sam Daniel Holland  ~  August 2004

On Saturday, March 19, 2011, this precious soul left the world.  He left behind my dear friends, his parents, Dale & Lisa, undoubtedly some of the best parents I've ever had the privilege to know.  I was fortunate enough to meet them when Claire was about 18 months old, and this changed my life in a way that is difficult to explain.  The words almost seem to diminish just how important this friendship has been to me over the years -- not to mention how deep our connection is, formed through our children, our struggles, our determination to make our children ALL THEY COULD BE, and most of all, the intense, profound, emotional, beautiful journey of raising children with special needs. 

I have admired Lisa & Dale since the beginning... always in awe of their attitudes, sense of humor, and ability to find the very essence of who Sam was, despite his "disability."  And if you ever met Sam, you'd know that he was FULL of personality, silly, seemed to "get" things on a higher level than most, and he had a unique way of seeing almost to your soul... hard to explain, but he had my heart from day one.

Kisses from Mom!

I can remember our first meeting like it was yesterday.  I remember Lisa & I had just finished a long day of classes to learn a new therapy to help our children.  I remember her getting Sam out of the car, we stood in the parking lot, and she handed him to me.  I MELTED.  He was a lot bigger than Claire, smiled at me, and he had the same crossed legs as she did.  He felt familiar -- like I'd always known him.  He was stiff like Claire, and he too had seizures.  This had become our "norm" as well, and there was just something so COMFORTING about having him in my arms.  He softened into me, it even felt like he was trying to hug me... so open... honest... pure... nothing but LOVE.  I remember I held him for awhile, planted plenty o' kisses on his beautiful cheeks, and I reluctantly gave him back up to Lisa as they were leaving. 

I would have other similar encounters with Sam over the years (though not nearly enough, as we live 10 hours apart), and each time, my old friend and I would reconnect, and LIFE WAS GOOD.  (No really, IT WAS!  Those of you who were blessed enough to know Sam knew that his "uniform" was his mustard yellow "Life is Good" t-shirt ~ SO incredibly fitting for a boy who was the KING of lovin' life.)

Dale & his "Peanut"

Our most recent get-together was in July of 2008 in Chicago.  We may or may not have allowed major bed jumping and mayhem to occur in our hotel room... SHHHHHHHHH!!!!

I am pretty sure Cal was the instigator... and Sam encouraged him with his constant grins. 
My heart was so full that day.

Lisa & Sam  ~  July 2008

Cal & Sam creating a Dwarf Sandwich

My Buddy & I

Suffice it to say that a part of my heart feels like it's missing now. 

Over the years, sadly, I've witnessed many children I loved pass away, and each time I hear the same things over & over... "He is in a better place now" and "At least he's not suffering anymore" and "God just lends us these special children for a short time" and "It happened for a reason" and "God will not give you more than you can handle."  While I know these things are said to help comfort those in need, I have realized that in reality, these trite phrases do nothing to provide comfort whatsoever because until you've walked a mile in Dale & Lisa's shoes -- or anyone else who has lost a child -- you cannot even FATHOM what this loss means.  Even I can't.

You wouldn't understand that Dale & Lisa have used countless therapies to benefit Sam over the years & were always seeking out new things to try with him that might better his life in some way.  You wouldn't understand that they just re-did their entire house to make it Sam-accessible.  You wouldn't understand that they spent hours researching alternative ways to help Sam with various issues that arose.  You wouldn't understand that Lisa & Dale watched their child have a stroke & a GI bleed & overcome it all with strength like I have never before witnessed.  You wouldn't understand what a light Sam was at his school, to his teachers and therapists, and what a role model he was to his peers.  You wouldn't understand how it works to have a child never "grow up" developmentally -- who required total care forever.  You wouldn't understand how you learn to communicate on a level that is SO DEEP, words aren't even necessary.  You wouldn't understand how it feels to invest SO MUCH OF YOURSELF into a child with a very different kind of love given in return.  You wouldn't understand that he was his parents' WORLD, their entire lives.   Peanut was their only child -- their perfect, precious son -- who, though he never spoke a word or walked a step, accomplished more in his 14 years than most do in a lifetime.

I am still trying to make sense of this myself... trying to figure out why these things happen to people who gladly would've cared for their child for the rest of their lives.  Why this seizure was different from any previous seizure... why Sam's journey here ended Saturday... how a parent can possibly move past something so traumatic and life-changing and find joy again. 

And I think it's because Sam's life was nothing BUT joy.  He dealt with things on a daily basis that most could never even fathom, yet he still smiled, still loved each day, and still changed lives despite any limitations.  I want to be like Sam when I grow up.

"Grieve not... nor speak of me with tears... but laugh and talk of me... as though I were beside you.  I loved you so... 'twas Heaven here with you."  ~ Isla Paschal Richardson

Dale & Lisa, I am so incredibly sorry for your loss.  I loved your Sam.  The world will never, ever be the same again without him.  I am here for you always and forever.

Rest in peace, Peanut.  You are SO LOVED.

Green

 

"May your blessings outnumber the shamrocks that grow, and may trouble avoid you wherever you go."  ~Irish Blessing

I may or may not be a day late with this post, but it's all good, right?!  I'm blaming my tardiness on March Madness, 'cause I was *completely* TV stoned yesterday.  The Hooligans are in HEAVEN this week with basketball on SOOOOO many channels!!!  This is our Graceland!  (LOVE Ace Ventura!)  (But seriously, WTH is up with truTV carrying so many games?!  What even IS truTV?!  Did it exist before this week?  Swear I'd never even heard of it till 2 days ago...oops!  Probably because we're damn near ALWAYS locked & loaded into mostly ESPN & ESPN2, thanks to Cal.  :)

Anyway... Happy (belated) St. Patty's Day! 

Shelly (the girls' Occupational Therapist) & Claire doing an art project for St. Patrick's Day.  The green foam was shaving cream + glue to make it "thicker" so Claire might tolerate it better.  SHE LOVED IT! OMG.

*LOVE* that they added "bling."    :)

It is ALWAYS amazing to see Claire get "into" a project, as it's not often we are blessed with a positive reaction to something, but SHE.  WAS.  DIGGIN'.  THIS!  Notice her hands open then closed then open again?  She was FEELING IT, yo!  SO.  PROUD!  This is going front & center on our fridge... maybe till Halloween.  Of 2012.

I don't think anyone is happier that Spring is here than me.  I have been ready for Spring since OCTOBER!  I know, I know, I am CLEARLY living in the wrong state if I "hate winter," but this is HOME, and I'm not going anywhere.  :)  We were graced with our first thunderstorm (with hail even) a few days ago.  I'm a regular Greg Forbes (is it creepy I know this guy's name & love his Torcon scale & watch him on The Weather Channel & possibly follow him on Facebook?!  HAHAHAHAHAHA!) this time of the year, obsessively following the weather & tracking storms, frequently making comments about bow echos and warm fronts & shitstorms... oh wait, that may not be an official weather term, but I like it!  Cal  & I were ooooohhhing and aaaaahhhhhing over this  phenomenon last weekend...

Fun, fun, eh?  It was one hail of a storm.  HA!

Speaking of green, I was busy mixin' up some magic (I'm out of control!  I'm now quoting Ted, the hair guy, from What Not To Wear?!?!?  Love him!) for my girl, Claire, and I thought I'd share my concoction.  I've been on a mission to have her "eating" this (see green delight below!) more days than not each week (vs. jar organic baby food), so my Vita-Mix is working OT lately!  I make a big green batch of love for her probably twice weekly, and I truly believe this is what has kept her so healthy through the nasty, germy winter.  Yes, we're freaks.  I'm fully aware, but hey, it's going into her g-tube, so at least she doesn't have to taste it!!!!!  (Cal said he wants a g-tube so he can painlessly get HIS greens down.  What... a dode.)

(Cue "AAAAAAAAHHHHHHHHHHHHH!!!!!!!!" heavenly sounding soprano voices)  This is my FAVORITE kitchen appliance!  We totally use this bad boy DAILY.  No lie.  Filled to the brim with green love!

Top view... ready to turn this mother out!

Finished product... good for 2-3 days of organic green smoothies for my girl, Claire!

60 mL slip tip syringes, babyyyyyy!  My best friends... no connectors, no mess, just shoot that sh*t in!!!!  Easy peasy!

On that (gross?  icky?  TMI?) green note, I'm off.  Apparently I'm tied for last in our NCAA Bracket Challenge, so CLEARLY it's time for The Perfect Cheer.   :)

It's ON like Donkey Kong.

We ALL know that date nights are vital to a strong marriage.  Similarly, date nights WITH YOUR CHILD are definitely worthwhile, too.  It's an interesting situation we have with our three children, two of whom are "profoundly affected" (...so the doctors tell us.  We just see two incredible individuals who still accomplish SO MUCH).  We are more than aware that our typical son, Cal (now 12), has not had a "typical" sibling relationship.  He has never once complained about this fact, though sometimes he wishes they could interact with him more (i.e., roughhousing, wrestling, playing sports outside, etc.).  All this being said, his close friends & basketball teammates have become the brothers Cal never had, while his sisters will always be his HEART.  He is the FINEST big brother I have ever known or could wish for.  He sees the worth in his sisters' lives, celebrates their teensy (almost non-existent) milestones, and he is prouder than proud to be their big brother.  From time-to-time, we try to have a date night with him -- just us 3 -- where we can remind him of how honored we are to be his parents.

Date night with Cal went down last week at Northrock Lanes.  Lane #43.  Bringin' it old school at the location of Scott's & my first date back in November of 1991.  The stakes were high, baby.

The boys & their balls... HAHAHAHHAHAH!  Sorry, that was HIGHLY inappropriate.  I couldn't help myself though!  They put it up on a tee for me!  (pin?!)

Everyone knows Scott is notorious for destroying us both in bowling, and tonight was no exception...

Preparing to "throw down."  His smile is scaring me...

Attempting the conversion, Scott unleashes the powerhouse, only to end in a "field goal."  Yep, right between the "maples," boys.  Can you say CHOKE?!??!  HA!

Yours truly... a real hot mess of a bowler.  :)  My *ONLY* strategy is to keep the ball out of the gutter, and tonight, I was on fi-yahhhhhh!  Must be the new specs!

Cal ~ appearing innocent, but plotting evil along with his Dad.  His primary goal all 4 games was to BEAT ME.  WTH!?!?   That is SO not hard to do!  AIM HIGH(er)! 

Interesting technique... did he actually throw the ball from the back between his legs?!?!  Ummm, no, but that ball's a real creeper.  Despite his unconventional ways, the kid can still get the job DONE!

As mentioned earlier, I have a snowball's chance in hell of ever actually WINNING a game.  Seriously, if I score over 50, I feel like I need to get in touch with the dang PBA, I'm feelin' it so much!  So imagine my delight when it was the final set, I'm losing to Cal (of all people!) by 5, and I'm 1 point (pin?!) ahead of Scott!!!!  I'm giddy with excitement!  I can literally feel the adrenaline coursing through my veins!  Cal's up first in the 10th frame, and the boy rolls a blowout.  For all you non-bowlers, this means he knocks down all but one pin.  (I like to pretend I know my shit about bowling, but really I just had some fun stealing terminology from this gem of a site!)  I'm terrified now, as I know my chances of reacting in a clutch situation are virtually slim-to-none, so I've all but thrown in my Wrist Master on this bad boy.  Second & final attempt for Cal... RIGHT IN THE MOAT!  He caps off that performance with this classic comment from Paul Blart, Mall Cop:  "I just scored a 95, so you can eat me!!!!!!!"  Ummmm, NOOOOOO.  Discipline inflicted. LOL  Reminder from the 12-year-old it was from a PG movie WE let him see.  Discussion about "Eat me" being a phrase he is going to need to wait until AT LEAST age 25 to use.  HA!  Still, our hooligan finishes with (in my opinion) one helluva score of 95.  Well done, Cali!  I'm up next.  And considering I'm sittin' at 81 & nursing a serious callous on my right thumb by this point, I realize it's likely totally OVER for me.

I step up, try to focus, toss (no really, I kind of DO toss it... it's hideous) a powder puff, and hope for the best.  9 PINS, SUCKAAAAAAAS!!!!!!!!  Santa came early!  HA!  OMG!  I'm now at 90, just 5 behind Cal.  According to Scott, the ONLY chance I have to "win it" (what?  Seriously?  *I* could win?!??!  OMG!?!?  Did Scott sandbag?!  What is going ON here?!??!) is to pick up the spare.  I quickly remember that means to "knock down the remaining pin" while reminding myself my track record all four games of "picking up the spare" was not too whippy.  I resign myself to the fact I may lose by 5 pins to my 12 year old. 

I zero in on where I want the ball to go, wind 'er up, and send that apple a flyin'!  It's heading STRAIGHT FOR THE REMAINING PIN!  How is that possible?!??!  What?  OMG?!?!?  KTFO!  Wait, that's boxing... SPARE!!!!!!!!!!  OMG!  I DID IT!  (and how?!??!)

I had one remaining ball, and I was determined to blow the rack.  (strike, yo!)  I'm goin' all the way!  Sadly (big surprise there!), I only managed to topple 7 pins with that honey, but I scored............ wait for it................a 98!!!!!!!!!!  SUCK ON THAT, CAL!  HA!

So, Scott is up for his final frame.  He is sittin' at 80.  NO WAY IN HELL he can get more than 18 points (again, pins?!) to beat me!  OMG!  This will mark the FIRST bowling game I've ever won in my ENTIRE FREAKIN' LIFE, and I'm what, 29?!  :)  This be-yotch is MINE.  And I am ready & willing to bench jockey Scott till the cows come home to earn it, too.  HA!

Pretending to be innocent & not care... it's a total ACT.  GOOD NIGHT, check out those shoes?!  They MAKE a size 14 bowling shoe!?!?  WOW.

What happens next is a total blur... details hazy, confusion setting in... but somehow defeat came wrapped in THIS package.

What... a DODE. 

Somehow, my so-called loving husband, whose last words to me were, "I am NOT going to 'give this game to you' -- I am WAYYYYY too competitive for that shit." busted 7 pins and then picked up the spare, just as I had done.  And then with total disrespect & neglect for my feelings (ha!), that cutthroat turd somehow managed to knock down ONE additional pin than me to BEAT ME BY ONE POINT.  I'm screamin' FOUL on this one.  Maybe he used a "dodo" ball (over the legal weight)?!  I'm pretty sure he cheated, but still... observe (& weep with me - ha!)...

SUCH bullshit.  OMG.  I had it locked up?!??!?!

It's all good... no love loss here.  OK, maybe just a little.  :)  Props to my Caaaaaaam, I GUESS. 

And FOR THE RECORD, I did score a PR (is that proper terminology?!) that night... oh yeahhhhhh.

Boo-yah!  106... my oh-so-crappy version of a "perfect game."  LOL

One more fun fact for you... check out my opening two frames of this fateful game -- on par to roll a deuce up in this mofo (200+!) .

I ROCK.  Oh yes.

I refuse to show you the last 8 frames, but I was KILLIN' IT those first two frames.  HA!

Date night destruction at its finest.

Peace out!

Mom of the F-ing Year

I try to pride myself on "ridin' the wave" of emotions, as I've been at this Mom-of-a-special-needs-child gig for almost 10 years now.  I have learned that there are going to be HIGHS & there are going to be LOWS, and they will likely be extremes.  (Ya' know, the highest of highs & lowest of lows...)  Once I got past that first year or two of life P.C. (Post-Claire ~ yep, barely remember life B.C. -- a reality which both delights & traumatizes me so...), I realized she was MEANT TO BE HERE, not destined for that die-before-age-1 thing which was ingrained into my soul that fateful day when she was 3.5 months old by a doctor I refuse to name (longest sentence EVER -- my bad!).  He's not worth it, and I promised Claire that once or twice yearly, for as long as I can, I will find a way to tell him what an asshole just how WRONG HE WAS.  :)  My girls are fighters, and they are WAY stronger than most people give them credit for, based on their size.  P4P, we KNOW Claire & Lola are totally packin'.  LOL

Yet another Dwarf-Off...

 So it always catches me WAY off-guard when I have a Debbie Downer Day (Triple D?!) strike out of the blue.  Today has been one of those days.  I refuse to succumb to it, but I think I've just gotta talk/think/pray/meditate/curse it out to get over it & get back to my Happy Place, which I'm SO needing right now.

Wah-Wah-Wahhhhhhhhhhhhh...  LOL

 It's almost not even worth mentioning the piddly stuff... seriously.  The crappy, broken sleep last night, Lola being awake/needy for 4-5 hours, taxes/bills due, rainy/dreary Tuesday (which means I cannot take my doggies out for a walk -- BOO!), housework, yard work, crazy busy schedules, cramps (HA!  TMI?!), blah blah blah -- all a real pain in my ass, but still, this stuff NEVER gets me down.  I rarely have those freak-out moments, and when I do, my "voice of reason" hubby always sets my mind at ease.  Scott & I are good together; we perfectly balance each other out, and my GOD, sometimes I SO need that.  I've always loved that Hans Selye quote which states:  "It's not stress that kills us, it is our reaction to it."  SOOOOOO true.

So, here's what got my panties in a wad this morning... and what is STILL weighing on my mind NOW.

The girls had PT this morning, and so I finally said "F-IT!" after that waste-of-time night's "sleep" & just got up and got myself & the girls ready for therapy.  I'd made some phone calls, & I was waiting for return calls.  Lola was dressed & ready for the day, sitting on my bed, leaning against my pillow when the phone rang.  It was a call I'd been anxiously awaiting to receive.  I was hoping to re-start Claire in Hippotherapy (AKA "Horses!" ~ Therapeutic Horseback Riding) & possibly try Lola in it for the first time, too.  Anyway, I raced out of my room, leaving Lola almost to the middle of the bed, leaned up against a pillow (as I was about to put all 7 of her hairs into a ponytail on top of her head to create "more head"/height... hahahaha!  Patented technique -- it WORKS!  LOL).  She was a little fussy, but mostly content & exhausted now, as she'd busted her ass all night to keep me awake!  What... a sweetheart.  LOL

February 28, 2011 ~ Go Sun Devils!

 Anyway -- being the EMF-freakshow that I am, we only have corded phones in our house (another post for another day!), so I rush out to grab the ringing phone, see it's Horses on the line, and I take the call.  (Hey, we ALL screen calls -- don't hate!)  We discussed the girls & their super fancy muscle tone (you think you're fancy, huh?!), leg scissoring, arching, rebel ways, & microcephaly/head size (there is not a riding helmet on Planet Earth that will fit my girls... the tiniest one they had last time completely covered not only Claire's head but also her entire FACE!  Scott's suggestion may be the best one yet -- a ping pong ball cut in half with a rubber band chin-strap added.  A la The Mouse and the Motorcycle.  HAHAHAHAHAHA!).  Then it is time to schedule a pre-evaluation of the dwarves for the program.  I run into the office to get on another (corded!  LOL) phone, as my calendar is on the desk in that room .  The office is across the house from my room, where Lola remains on the bed content/calm.  You probably see where this is going...

Anyway, as we were looking at both of our insanely-busy schedules, trying to find a common time, the girls' PT arrives at the front door.  I yell, "Hello Donna!!!!  I'll be right out!" to our beloved physical therapist/AKA member of the family (!).  She starts working with Claire, & I am wrapping up the scheduling of Horses.  Mid-call, I hear the most horrifying sound a Mother could ever hear... THUD! ... followed by silence... followed by me saying, "Hang on a minute" to Horses & asking Donna if she too heard the noise, to which she replied, "YES... is someone in your room?"

Donna, our beloved PT ~ All things to all people (and dogs!)!  LOL  :)  We love you!!!

 PANIC... OMG... hung up on Horses... ran into my bedroom, several steps behind Donna, who'd put Claire down to go check on that noise... praying to GOD it was the dogs in their crate thumping their legs... NO WAY Lola could've possibly... SURELY NOT... I left her almost in the CENTER of our King-sized bed just 2 minutes prior... she's "non-mobile"... NO... OMG, NO!!!!!!! 

Yes, I'm Mom of the Year.  Or maybe Lola is Almost-5-Year-Old-Dwarf-of-the-Year??!?!  But somehow, she managed to dive head-first off our tall bed onto the hardwood floor.  And she CLEARLY did NOT "stick the landing."  This is gonna cost her the gold FO SHO.

There really are no words for what happened next... the regular medical/motherly head-to-toe body assessment...reassurance from Donna that there would've been NO way I could've predicted that would happen... EXTREME GUILT on my part... paralyzing fear... worry... adrenaline rush... are her pupils the same size?.... yes... red marks/pre-bruises? ... yes, in two places... by right eyebrow... on left side of forehead... OMG, I am the WORST MOTHER EVER... how could I have let this happen to my precious baby?!??!! ... is she OK?... she's aware... she cried, but she's stopped now... sucking like she's hungry???... should I feed her???... I SUCK as a mother... OMG... I should NEVER have left her on the bed even for ONE MINUTE -- yet I've done so THOUSANDS of times with no problem... what have I done?!??!... where's the Arnica gel???... oh wait, now she's getting tired... did I hurt her brain FURTHER?... should I wake her up or let her sleep?... is she groggier than normal?... F'in A, I let my 10 pound baby fall off my bed onto her TINY HEAD... OMFG...

This is the tip of the iceberg of what transpired, but suffice it to say, she sucked down a whole 4-oz. bottle 15 minutes later (in 5 minutes flat!), burped like normal (no spit-up -- YEAH! -- that dwarf KNEW I'd have panicked if she vomited), got sleepy like usual, and drifted off.  I forced her to wake up after 10-15 minutes, being the paranoid mother I am...and she was fine.  Pupils looked good, red spots faded, one little bruise remaining on her eye/eyebrow area.  SO.  FLIPPIN'.  MAD.  AT.  MYSELF!  I cannot see straight.

I.  SUCK.  Notice the bruise on right eyebrow area?!  I am SO SORRY, Mrs. Pocket... OMG.

Stickin' it to me... REALLY ampin' up Mama's guilt factor.  THANKS, Polly Ann.  I'm gonna blame the Nun for this bad boy.  LOL

 Mommy guilt's a bitch, yo.  Tryin' to let it go, know it wasn't my fault (but honestly, it WAS -- I should NEVER have left her there... not even to take one little phone call), and YES, I know that shit happens, but I still feel like crap.

As I type this, she's sleeping peacefully on the couch (I may or may not have duct taped her to it to prevent another basejumping attempt -- kidding!) & I'm about to go wake her up one last time to be sure all is OK (I've been watching her breathe as she sleeps... and not for ONE SECOND do I feel this is neurotic.  I do it ALL the time.  Did it this morning with Claire, too.  One tiny slice of our life I wish I didn't have to do/worry about, but I will NOT focus on it, just honor my needs & MOVE THE HELL ON!). 

I need my Mommy license revoked.  :(

I don't know what it is about these to-be-expected extremes that I continue to allow to get me all worked up.  (did that make ANY sense?!)  If I know they're coming, WHY can I not just stay calm & not let myself get too high or low when they occur?  Easier said than done?!  I don't know... I just have SO MUCH INVESTED IN THESE KIDS OF MINE.  Every day I am searching to find ways to optimize/better/jazz up their lives (Horses, for example!).  I research new supplements, schedule maintenance visits with our chiro (whom we LOVE!), meditate with the girls, remove as much drama/stress as possible from their lives & our own, speak positively to them, believe in them, honor their lives (partly by creating this blog) -- ANYTHING and EVERYTHING possible to make all right with their worlds.  And ONE "slip-up" -- which may or may not be "my fault" -- can bring me to my knees as their Mom, make me fall to a heap of tears & sobs & those gaspy heaves which remind me how fragile their lives are -- or maybe how fragile ALL OF LIFE IS. 

And I question it all for those tough few minutes/hours/days... AM I living my life to the fullest?  AM I loving each moment ENOUGH?

 Just wish I could forever protect my babies... and today reminds me that I CANNOT *ALWAYS* do that.  And there really are no words to describe how much that scares the SHIT out of me.  I must remember...

"I am not afraid of tomorrow, for I have seen yesterday and I love today."  ~William Allen White

I'm pressin' on... and I WILL call back Horses & get that show on the road.  I want more of THIS for my girls...

September 13, 2005 ~ Our 4-year-old wrangler, Claire-bug!

CUTEST.  THING.  I'VE.  **EVER**.  SEEN!!!!!  Our little cowgirl, Claire ~ age 4. 

Ride 'em, Bucka-Roo!!!!!!!!  October 4, 2005

So yeah, now I'm thinking... screw EMF's.  Cordless phones are soundin' pretty damn good again.  :)