Showing posts with label victory. Show all posts
Showing posts with label victory. Show all posts

November 14, 2011

EMBRACING THE MOMENTS

it was quite the weekend.


i think we racked up more activity in 3 days then we have in 3 months.


we went to a movie
and
went to church
and
went ice skating...


eyes alight, bodies moving, smiles glowing
tentative first steps, arms flailing, knees shaking, balance found, then off with great gusto
the crispness of the frosty air,
feel its invisible flow across my cheeks and through my hair
jittery nerves, must breathe deeply
inhale that stale icy arena scent 
warmth from movement gently easing away sedentary chill 




parker zipping by,
avery delicately gliding past
both beaming with the exhilaration of the moment
"look at me, mom! look at me!"




graham, mr photographer extraordinaire, racing ahead to capture the moments
or 
romantically sidling up beside me
hand in hand, round the rink we go
we're doing it. together. 


i nearly lost it as i glided slipped and slid my way across the ice
being there
in the moment
fully embracing it 
proved to be a much bigger challenge for me than staying upright on the ice 




there is part of me that is always waiting for the other shoe to drop
it's a learned behavior now
after all, the better days, the able days, the days where the light at the end of the tunnel seems close at hand, those days have never lasted.
the inevitable crash would come,
often in the blink of an eye.
sweet victory hacked off at the knees 
hopes raised, hopes dashed
hope falls prey to ruthless loss
unmercifully ushered in on a torrent of gut wrenching grief
bid farewell to doing, to being, to living again and again and again.


these repetitive losses have tainted my ability to be fully engaged 
they gnaw on my shoulder, grasp my belly and tiptoe through my heart 
i so fear the agony that comes when that tentative sense of well being is ripped from my grasp that i am scared to fully embrace the joy of the able bodied moments
to hug it tight, to whoop it up, to shout it from the mountain top
to sink into the joy and lose myself in the exhilaration of it

the protector in me, the survivor whispers cautiously;
spare yourself some grief
celebrate from a distant place
hold utter exuberance at bay
guard your heart
for tomorrow
this could all fall apart


this weekend, in that rink, it dawned on me


the grief is fully felt; even if the joy was not


this weekend, parker's wheelchair sat empty
tomorrow it may not.
i will not allow the fear of tomorrow to over shadow my joy in today.


i will fully embrace the joy of this moment without fearing the pain that the loss of it will create.



i will celebrate this moment with every fiber of my being
i will allow myself to embrace it with whole hearted gusto
i will cry, i will laugh, i will move, i will breath
and
i will not worry about what tomorrow will bring
come what may. come what might.


after all, i've survived every loss and fought my way back to victory every time. if i have to, i'll do it again. and again. and again.
.
"you gain strength, courage and confidence 
by every experience in which you really stop to look fear in the face. 
you are able to say to yourself, 
"i have lived through this horror. i can take the next thing that comes along." 
you must do the thing you think you cannot do.
                                             -eleanor roosevelt

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.



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.

September 20, 2009

THE LAST 2 WEEKS ON THE FEARLESS FRONT


Here's what's been happening on the fearless front over the past 2 weeks:


"courage is standing at the bottom of the mountain, knowing that the climb is going to hurt like hell and climbing anyway."


there was much to explore on top of the mountain (in Whistler)
there were breathtaking views of the valley below
and
the snow capped peaks of the mountaintop that still towered above us
and
there was a craggy, boulder strewn hill before us



it wasn't long before the kids were wanting to "hike" up it
no one expected me to go along
no one even dreamed that it was possible

however
i was profoundly aware that i had to climb it

i didn't know why
i didn't know how
but
i knew i had to do it

i had to do it for my family
i had to do it for me

i had an innate sense of God's calling;

"TRUST me to give you the strength to climb this mountain."
and so i climbed.



when i reached the top, taylor remarked;

"wow, mom. all summer you were practically bedridden and now you just climbed a mountain."



it was (is) remarkable. it was (is) miraculous.

i climbed because i was called to
and
now i know why

conquering that rocky, boulder strewn hill on that mountain top is our family's tangible, visual symbol of the victory that is ours through Christ.


we can trust him to give us the courage to face the mountain and the strength to keep climbing until he ultimately gives us victory over it.



"one day at time - this is enough. do not look back and grieve over the past for it is gone; and do not be troubled about the future, for it has not yet come. live in the present and make it so beautiful that it will be worth remembering."


since starting my pre-digested goo, i am continuing to see a steady improvement. my blood work is continuing to show improvements. better than that, i can feel it. i am experiencing some semblance of "wellness" for 2-3 hours just about every day.

yes, little by little i am making progress.
it's quite remarkable.

physically, i no longer feel like i have one foot in the grave...yet after living in the valley of the shadow of death for so long, it is challenging to fear no evil.
it is not an irrational fear to have. it is perfectly understandable

while i hope the remarkable improvements that i have experienced over the past 4 weeks, mean that the worst is behind me, i recognize that i am not out of the woods, that there is still more mountain left to climb - and just how big, how high, how rocky and jagged it is remains to be seen. and i carry with me the knowledge that what lies ahead may be just as painful as what lies behind. abilities gained and improvements seen may once again be (temporarily) lost.

yes, everyday, i have a moment (or 2 or 3 or 1,000) where these fears overwhelm me just as surely as my everyday episodes of pain, fatigue and general retardedness do. i can look at my life - what is has been and what it is and what i hope for it to be and i can become easily overwhelmed with the mountain that still lies before me...and i fear plummeting back into the darkness and pain of the valley...
and i am not alone in feeling these fears
my kids
my husband
my family
feel and face these fears too

living in the valley brings with it a mountain of grief, pain, sorrow and loss for each of us - and some days that mountain can feel just as insurmountable as my physical fight.
yes, we're in this fight together
while we can claw, climb and fight our way up it together
ultimately
healing in the valley and victory over the mountain
comes only through complete reliance and trust in God

just as surely as i must
TRUST Him to carry me up this mountain
i must also
TRUST Him to carry my family up it too



here's a small picture/video montage of our mountain top experience: