June 26, 2011

GARY, I'M BAAAAACK!

we’ve spent the last several days on Whidbey island at a cabin on the ocean.
my dream vacation.
happy sigh.


it has always been one of my dreams to have a place that is just mere meters from the ocean. i had blogged about it a couple of years ago. unbeknown to me, our friend courtney is the property manager of a little ocean front cabin. after reading my post, she surprised us with the gift of a one week stay at this cabin. that was last year – and she graciously has bestowed the gift of another week this year. wow. what an incredible blessing.

we spent this exact same week up here last year. it's hard to believe that it has already been a year. there has been so much change yet so little change. does that even make sense? how do i explain that? graham and i were looking back over the pictures from last year, and we can’t believe how terribly frail parker was.


parker last year

he played a little but spent most of the time on the couch in the cabin. this year he is so much stronger and has spent at least a portion of everyday able to play on the beach…yet he remains fragile and lives with the relentless joint pain and constant bombardment of bouts of daily periods of “loopiness”.


parker this year

he’s come a long way…but has a long way to go. a year ago, we were hopeful the worst was behind us - who knew that a mere 3 months later it would be determined he would need to get a PICC and start IV. and who could ever have predicted the psychiatric issues that would grip and imprison him once those iv meds hit the infection in his brain. unimaginable what we’ve lived thru - nightmare after nightmare... just when we thought the worst must surely be behind us, we'd be blind sided by another trauma.


parker, avery, harrison beachcombing 2011

a year ago, we were still reeling from the boys' diagnosis and grappling to come to terms with it. tensions ran thick and there were many moments where i doubted we would make it thru the darkness in tact. there were days when we came together as a family, weeping and holding on to each other for comfort and there have been days when none of us wanted to be around each other. a year ago, taylor wasn't to interested in being home. he was sick. his brother was sick. and everyone was caught up in their own pain and grief. certainly the prospect of spending a week with "the parents" on a remote cabin without internet or TV wasn't too appealing to him. so he opted to stay home. this year, we are all in a better place emotionally. he is doing well physically. so much so that he couldn't come this year because he is working full time. we are healing. this year, he did drive all the way down here to spend a bit of time with us. ok, we also needed him to pick up the dog but still...the closeness is there again. and for that i am grateful. i recognize he is moving on with his life, this is healthy and natural but i am in a far better place when we can all be together. we are not "complete" when someone is missing. i don’t know what lies ahead of us now. we take one day at a time. some days it’s just one moment at a time.


are we stronger? yes. only by the grace of God.
are we intact? yes. only by the grace of God

we live in the here and now, embracing the good moments as they come and squeezing every precious drop out of them. when the bad moments come, we fight our way thru as best we can - often the challenges they present us with feel so absolutely insurmountable that it is all we can do to just exist in a haze until they retreat. so very often the care, love and support of the folks that have come alongside of us in those times has stood out as beacons of light that have helped guide us and encourage us through the murky, menacing waters that far too often have engulfed us. we feel incredibly blessed and amazed by both old friendships and the new ones that we’ve formed along this crazy journey.


fish eggs

we’ve seen an incredible wealth of wild life this visit. last year, parker and i witnessed a profoundly remarkable moment. we were sitting on the beach and all of a sudden, a whale surfaced right in front of us - couldn't have been more than 50 feet away. close enough, that we could feel the spray from it's blow hole misting our skin, see the barnacles scattered along it's body and feel the power emanating from this amazing creature of the deep. we could feel the power of it reverberate through our entire being. it was an outrageously awesome moment. truly a once-in-a-lifetime sort of moment.



hey, that "log" is moving!

no whales this year... however we got up close and personal with an elephant seal. at first glance she looked like a log...a moving log! avery named her alice and she was just hanging out right down the beach from our cabin. that was cool. we visited alice nearly every day.


alice, the elephant seal.

the island is teaming with wild bunnies. we had one rather chunky one come for several visits. avery named him Thumper and declared that Thumper absolutely loved her best in the whole world.


avery and thumper

i'd say she's got a case for that - after all, he let her get close enough to pet him. on the contrary he also bequeathed the same priviledge to parker...


parker and thumper

oh, i almost forgot! GARY! how could i forget GARY! i'm sure you are wondering who in the world is gary? he must be pretty special after all he's the title of this post.
is gary another wild animal we named?
nope.
gary is a vaccuum.
really.
a vaccuum named gary.
parker couldn't wait to see gary.
like i mentioned at the start of this post, parker spent A LOT of time sacked out on the couch last year. the cabin has a TV but no cable. about the only channels available are the hallmark movie channel (which i was ecstatic about but it made parker gag) and infomercial channels. for some strange reason , parker was completely engrossed with watching them. he spent HOURS watching infomercial after infomercial. he probably earned some sort of MBA or degree in infomercials. by the end of the week, he quite literally could give you the run down, verbatim, on just about every product available.


parker watching gary last year

but gary, oh gary, was his favorite.
it was pretty hilarious...i mean who names a vacuum cleaner? (ok, that is something we would do) but for 90 minutes, this guy would talk about all the amazing and magical things that gary could do. it just humanized the stupid vacuum. i mean really humanized it! by the end of the week, i was ready to buy one and take it home as a pet!

when we told parker we were getting to go to the cabin again this year, the very first thing out of his mouth was

"YES! i can't wait to hear how gary is doing! i've missed him."

and
the very first thing he did when we arrived, was grab the remote and start surfing for gary...


GARY, I'M BAAAAACK!


June 22, 2011

REFLECTIONS FROM A DIE-HARD FAN


Dear Canucks and world at large,

it is hard to believe that only a week ago, we were nervously counting down the hours to the BIG game 7 of the Stanley Cup Playoffs. we were bursting with pride, excited beyond reason and nearly faint with nervous anticipation. and then we lost...


fast forward a mere 7 days, and we are still reeling - not so much from the loss (albeit that is still keenly felt) but rather from the aftermath of that loss. the horror of watching that unfold on my TV screen still leaves a bitter aftertaste in my mouth.


i felt compelled to write to you - both my dearly beloved team and the world at large. i don't expect that you'll ever see or read this and most likely only a few folks in the worldwide web will stumble across this and read it ~ but i just felt the need to share. to focus on some of my great canuck memories - in an effort to ease the sting of our loss but more importantly, to squelch the sting of sadness that the diabolical hours after the game have left me with.

i think it is safe to say that every canadian boy (and ahem, girl, for that matter)

avery, avid cheerleader at age 5

grows up dreaming of playing in the NHL. my kids are no exception.

taylor, goalie extraordinaire at age 5

over the years, my 2 sons, taylor and parker, have spent many hours engaged in make believe hockey games. true die hard canadian boys loving the game and often engrossed in epic make believe battles for the stanley cup.


parker, already an intense street hockey aficionado at the age of 3

my 2 sons as well as another canadian boy are now fighting a devastating disease. they are such die hard fans that their AMERICAN doctor cheered for you on behalf of them. his practice is in california, just outside of San Jose. it was during your playoff battle with San Jose Sharks that he declared himself a "Canuck" on behalf of my boys and our canadian friend riley lindberg (
you can read more about riley's battle here) the boys, along with many other canadians, myself included, are fighting a devastating illness called lyme disease. it is a bacterial borne infection contracted through the bite of an infected tick that invades and attacks every part of the body and mind.


taylor and parker, 2009

in much the same way that the Boston series was, in our humble opinion, riddled with "one-sided reffing" and controversy, the diagnosis and treatment of lyme disease is tainted. in our experience, it is literally non-existent. so much so, that the disease, in it's advanced stages is not recognized nor treated in canada. our family, as well as the lindberg family (& many other canadians for that matter) are forced to seek treatment outside of canada for our desperately ill children (& other family members) ...but enough about politics, unfairness, controversy and all that crap. after all, that is not the purpose of this letter. rather just wanted to give a bit of background as to why or how there happens to be an american doctor who cheered you on and is even driving around with a johnny canuck sticker proudly displayed on his truck.

johnny canuck on DR H's truck

furthermore, what we have always strived to instill in our kids in regards to the debacle called lyme is on par for how we are choosing to view the mayhem that ravaged our city in the hours after the big loss - indifference in our canadian system nearly cost our son Parker his life yet the criminal actions of those who abdicated responsibility for his care does not in any way, shape or form define his worth nor will we allow their diabolical in-action to overshadow the rest of his and our life - we will not allow this devastating disease nor the nonsensical denial of it to define who we are or what we believe in.

"one bad nite doesn't erase an entire season of great memories"
~our family's message
written on the plywood wall of well wishes in downtown vancouver


in much the same way, we will not allow the senseless actions propagated by a few morons define our city nor will we allow it to loot our memories of what has been an incredible season of hockey. after all, we are die-hard fans.
and for this reason, despite great pain and fatigue, parker insisted on journeying downtown in order to be part of the post riot clean up and give voice to his love of our city and you, our canucks. (several of the pictures contained in this post are from that day)


parker signing the plywood wall of good will and wishes

by the time, our son parker was rushed down to the USA for treatment, he was on death's door.
riley's life still hangs in the balance. his mother and him forced to move to and live in the USA now in order to be close to our american doctor. riley's world has grown very small. this disease has ravaged his body and mind...and in it's devastating wake, it has left him cocooned away from the rest of the world. sound and light wreak havoc on his taxed nervous system. he is far too sick and too weak to even watch that which he loves so much - canuck hockey. even the sound of voices wreak havoc on his body - yet he has bravely tolerated whispered updates of each and every one of your games.
why?
because he is a die hard fan
and
in honor of that, we signed the wall for him too...



parker's fervor for the 'nucks is deeply ingrained. he's no bandwagon fan. he has been a canuck forever and a day. from the time he could barely speak, he was a fan. our memories run deep. and they give us reason to smile.


when you were in the playoffs 8 years ago (like i need remind you) i was in labor with my daughter, avery. it was may 2. canucks vs. wild. game 5. round 2. and labor or not, i was not willing to miss the game. there were no TV's allowed in the delivery room, but, along with arriving in full makeup and heels, i was accompanied by a radio. and yes, it was on during my entire labor. you can hear it loud and clear in the background of our birth video.

that game went into overtime. when the game went into overtime, and i still had not given birth but i was bound and determined not to miss watching it. the radio just would not suffice...therefore, on the intermission, between the end of the 3rd and the start of OT, i gave birth, showered and made it into the hospital lounge in order to watch the OT on TV. that is no lie and absolutely not exaggerated for the purpose of making this letter more entertaining.

avery, parker, taylor
may 2, 2003

both of our sons were in the delivery room. upon their sister's arrival into the world, the first words she heard was parker's enthusiastic,

"welcome to the world, avery. guess what? the canucks are in the stanley cup playoffs!"


he was 3 years old. and she? roughly 3 seconds old.
we were all in the hospital lounge watching the OT, when brent sopel scored the winning goal..
parker suggested that we name avery "sopel".
i drew the line at that.
but
that doesn't diminish the fact that i am still a die hard fan.

i have a multitude of incredible canuck memories. time does not allow me to delve into them in depth but a few highlights over the years...like way back when kirk maclean was residing in goal and our high school class won a contest that sent us to a game. i remember we screamed A LOT at that game. most likely because we were teenagers and more than a few of us girls had very big crushes on kirk and trevor. speaking of crushes, my big one was todd bertuzzi - abashedly i admit this was during my adult years. in fact, so vocal was i about that crush, that he was known has "hottie toddy" in our home. i've since moved on to bieksa. love that guy.

aside from the silliness of these unrequited crushes, i remember the many games i was able to attend with my eldest son, taylor. stand out memories from those times include the time i was asked by a girl in the seat next to us if i was taylor's SISTER! i will never forget that nor will i let him! another thing about die hard fans is they are at games well before the official puck drop. during one pre-game skate, bertuzzi skated over to the boards, pointed at taylor and tossed the puck over the glass to him. i thought i'd died and gone to heaven! we fought over that coveted puck for years. ultimately, taylor won and 9 years later, it is still in his room.

i could go on and on and on...after all, in this house, we are all die hard fans! even our dog, harrison is pretty hardcore. he proudly dons his canuck's attire and

harrison's away jersey

even though he is still a puppy and therefore has a limited attention span, he still keenly watches each and every game.



harrison's home jersey

as i reflect on all my canuck memories, the one most burned into my mind is of parker receiving his first tickets ever...
oh how he wanted and dreamed and begged to go to see you play in person.
on his 7th birthday, thanks to the generosity of a friend, that dream became reality.
we creatively wrapped the tickets in an old box of lego. when he found the tickets he was so shocked he was practically speechless...it was so beyond his dreams that he just could not wrap his brain around it.
it is one of my favorite memories. glad we captured it on video.

video

hard to believe that in a few short years, his young life would end up so radically altered. yet, he remains a witty, funny, empathetic and joy filled kid. and he is brave. so very brave. he has endured so much pain and has been wheelchair bound for most of the past 22 months. no kid should have to live thru what he has lived thru - his childhood stolen in the blink of an eye - this struggle succinctly put in an update of sorts my husband recently wrote,

" much of parker's day is regimented around medications and medical therapies and doctor's appointments. in spite of this, he remains a funny, sarcastic yet tender hearted, caring and witty kid. he enjoys watching hockey and basketball, phineas and ferb, and saturday morning cartoons. he's also developing a keen interest and skill at making stop motion videos. we are overjoyed to see small steps of progress in his condition but i am heartbroken for what he is missing out on as his young life barrels on...in my heart, i curse the disease that is keeping him from shooting hoops, taking slap shots and scoring goals, shut away from neighborhood street hockey games, out of school, off the court, off the mountain bike trails, the ski slopes and all the other crazy and reckless stuff 11 year old boys should be doing. he is much improved but remains significantly disabled. we don't really have a time line as far as him being completely well again...but we remain hopeful."

in the fall of 2009, parker's disease progressed to the point where it became necessary for him to be put on IV treatment in order to fight it. this required a surgery, done in the USA, to have a PICC inserted. a PICC line is a permanent line that runs from an external insertion point on the arm, into a vein and is threaded internally in the vein in his arm all the way up to his heart. it was a scary thing for a 10 year old to face. but face it he did. and with the same finesse and sense of humor with which he has handled all of the curve balls life and lyme have thrown at him, he "named" his PICC line.

his PICC's name is raymond... as in mason raymond his fave canuck. why? because die hard fans always name their medical devices after their favorite player. duh.



parker's PICC raymond with "standard" PICC dressing

parker and PICC raymond in their canuck attire
why?
because die hard fans always ensure their medical devices are attired in team colors

our thoughts and well wishes go out to mason raymond...not the PICC but the actual player.


mason raymond sustained several broken vertebra after a questionable hit from a bruin's player in game 6. parker was crushed and in tears at the sight of his favorite player laying in a crumpled heap on the ice. and obviously incredibly outraged. his emotions run deep and wide. his love for this team evident in how intensely personal he takes every win and every loss. intense. part from passion and part from that beast of an infection that has invaded his brain and nervous system. his health always hangs in a precarious balance; the scales easily tipped by too much stimulation. at times, the emotion of the game, the stimulus of the noise, the nervous anticipation, the "way too many over time minutes" are all too much for his brain to digest and can overwhelm his body and trigger an avalanche of intense and frightening symptoms. the fervor of it all, whether it be a crushing loss or a triumphant win have provoked tears, tremors, migraines, hallucinations, delirium and many unspeakable symptoms too painful to utter.

so why let him watch?

the answer is simple.

he is a die hard fan -
through the good times, bad times and even during the downright ugly times.

die hard fans have the courage to stay strong and keep cheering - even in the face of crushing loss, and in the wake of the aftermath, they find victory...



die hard fans don't riot
and
they never give up
and
we never, ever, ever lose hope that one day victory will be ours.

June 11, 2011

CRUISING


parker's wheels - cruising canuck's style

we're back from SF.

ok. we've been back nearly 4 weeks now. argh! why am i always a month behind myself? our appointments with DR H went well. more about that in another 4 weeks...er, i mean, another day soon. i'd rather talk about non-medical stuff today. i'd rather talk about non-medical, non-lyme stuff anyday...which might just be the reason behind the delay. i dunno.

anyway, back to SF.

we certainly made a splash while we were away...i mean how could we not - considering we had another car-boat?! oh yessiree! our car boat rental issues are so legendary now, it would be weirdly disappointing to NOT get a car boat.

this trip's car boat



epic trunk space

our cars are so epic in size, i believe even our GPS, montgomery, is confused. car or boat? pretty sure this time around it thought it was directing a boat.
we started to suspect that montgomery was directing us on a rather unconventional route when we bypassed the exit for the bridge and headed towards a marina...and then, when there was nothing but water around us, it told us to go "off road"...call me crazy but see for yourself...


i'm not lying. i'm serious. it was one of the most hilarious things ever...

once we got ourselves and our boat sorted out, our first call of port was in-n-out burger. obviously. parker has a serious burger addiction. we indulged it with 3 visits this time. hear my arteries screaming for mercy.


avery, on the other hand, is not so big on burgers...but in-n-out worked it's magic on her and she's given it the "it's okay" rating - which is a huge compliment as far as her standards go.


quite frankly, so picky is she, that we couldn't believe she ate any of it. this was near historic - so naturally, i wanted to document the landmark event -


she was less than impressed by my exuberance. she even made me pinky swear i wouldn't post any of these pictures on facebook...


i'm lucky she didn't mention anything about not posting them on the blog. ha ha. one day you'll thank me for recording these memories, my dear daughter.



rather than try to cruise incognito (which the kids prefer) we proudly flew our canucks flag from our car boat. during the week that we were down in SF, "our" hockey team, the vancouver canucks, were battling the san jose sharks in a bid for a spot in the stanley cup playoff final. there was something about being in close vicinity to the san jose area that was incredibly gratifying - especially given that the canucks absolutely dominated the sharks while we were there.


a funny thing happened during one of our drive's to DR H's office. we were cruising down the highway and this truck kept speeding up beside us and the driver kept looking over at us and glaring. we were a little unnerved and wondering what in the world was this guys problem...and then we noticed he had a SJ sharks sticker on his truck and sharks ball cap on his dashboard. once we figured it out. we grinned broadly and gave him the v for victory! then we sped off as fast as possible. ha ha.

i'm actually shocked that our rental car didn't get vandalized...but speaking of vandalizing, we did decorate DR H's truck with canuck's stickers the day after their 7-3 victory over SJ.
the day after the BIG win was a non-appointment day, but it just so happened that we had to drop by DR H's office to pick up a couple iv supplies (note to self: i should not pack iv supplies. i always forget something).we even cheekily blasted into his office waving our canucks flags, more than ready to rub our team's dominance in his face...but he'd just gone into an appointment with a patient so we couldn't personally rub it in.


DR H's canuck's sticker

we were hoping to actually drive down to SJ and circle the shark tank but we just weren't up to making the trip...or i should say that because energy is restricted we needed to pick and choose one outing. as fun as it would have been to cruise thru SJ, we chose to go to santa cruz instead. we had heard there is a boardwalk and beach area there. i really felt the need, both emotionally and physically, to have some part of this trip actually 'feel' like a vacation.

view of the beach from santa cruz boardwalk

happily, our best day health wise and weather wise happened to be on the same day! so on the thursday we drove down to santa cruz and spent the afternoon there. we checked out the boardwalk and parker and avery played a round of mini golf.


the boardwalk was pretty cool. maybe we'll go back next time and ride some of the rides...maybe, maybe not. our life is a roller coaster, not sure i'm apt to voluntarily go on one - let alone pay for it.


the beach area by the boardwalk was glorious. parker kept saying...


"this is how i always imagined california to be!"

isn't that cute and endearing? so true. i'm so glad that after 6 trips to california that parker was finally able to experience california the way it is supposed to be. and
he really did. the last couple of weeks leading up to our trip, he was doing quite poorly again, so it was so great for him to finally have a good day. DR H told us about a place called the mystery spot (also located in santa cruz). we're really hoping to visit it next time. it looks so cool...check it out here.

i, too, really enjoyed our day in santa cruz. it was just what the doctor ordered. it was good to sit and watch my kids "be kids". that is a sight i'm not apt to ever take for granted. ever. life is fragile.


just as we were leaving the boardwalk, avery spotted one of those old school photo booths. and she begged to do it. i'm not big on "wasting" money on things like that but i finally acquiesced. and i am soooooo glad i did.


it turns out one of my all time favorite photos was captured in that silly old booth. it's grainy and poor quality but it is alive. if that makes sense. i look carefree. happy. alive. exuberant.


life is fragile. it hurts a lot of the time. but there are always moments, as fleeting as they may be, where life feels good and you are happy to just be alive. and who knew a silly little photo booth could capture that feeling.

we ended up staying in the san mateo area this time. this was a new to us area to stay in. our hotel happened to be just around the corner from coyote point park. on our last day, we had a bit of time to kill in between checking out of our hotel and needing to check in to the airport, so we decided to cruise through the park and check it out. it turns out you have to pay to go into the park...but you know what? the park attendant let us cruise in for free...canucks flag and everything. isn't that so lovely?

believe it or not, as we were parking, we noticed this guy taking pictures with a massive camera...the camera was HUGE but that is not what caught our attention...rather it was the canucks t-shirt he was wearing! YES! believe it or not! what are the chances, eh?


we spent about 30 minutes on the beach at coyote point park, just enjoying the fresh air and searching for a few beach treasures to bring home.





then it was time to head to the airport...but we had one last port of call to make on our way there. you see, just on the outskirts of the oakland airport, on doo little drive, along the meandering water front, there sits a lonely watermelon. we cruise by this watermelon every trip and we have always wondered about it and figured there must be a story behind it. turns out there is...read about the watermelon here. and would you believe there is even a facebook fan page dedicated to the watermelon rock? seriously! who knew?


i wonder what new mystery we'll uncover on our next trip to the bay? stay tuned.