TRUST FOREVER

"never doubt in the darkness what God has shown you in the light."

we successfully fulfilled Taylor's birthday adventure today...



we've been planning this adventure for a very long time...but before i explain the story behind it, i might as well just go ahead and reveal the results first ...figure most of you are going to scroll down before reading anything anyhow...


we both got TRUST tattoos.

mine is on my wrist.

they both have lyme green stars.
green stars symbolize HOPE.

Taylor's is on his forearm.

the idea of permanently inking ourselves with the word "TRUST" was conceived already about a year and a half ago. our desire in doing it was two fold. one - it was to be our special way of celebrating god's faithfulness in fulfilling his promise of healing. secondly - we felt it was a unique way to share with those we meet the story behind the word TRUST.

the initial plan was that this would be something we would wait to do until i was 100% healed.

of course, we never expected that this journey of TRUST would still be raging on.

this summer i experienced some of my darkest moments of doubting and questioning God's promise to me... His amazing grace and tender mercies are what brought me out of it. God is so faithful to meet us even in our darkest moments because he is trust-worthy. just shortly after that, taylor and i were talking about just how challenging it can be to continue to believe what God has promised when it feels so very dark and hopeless. it was during this discussion that taylor said, "you know, mom, we need to get our TRUST tattoos now."

it was exactly what i had been thinking.
it was exactly what i felt i NEEDED to do, too.

yes...inking TRUST before the fulfillment of it is complete is in a way our statement of faith in what God has promised. our way of saying,

"yes, even in the midst of the darkness, i believe God's promise! I believe that what he has said He will do, HE WILL DO!"

and lastly,
about that 2 day delay!
we're still not exactly sure how that mix up occurred.
however,
i now know why...

i sat down to do my devotions this morning - i read from a book called "31 days of praise"
i opened it up to DAY 24
and
the verse for today, Sept 24th was OUR TRUST VERSE!
so amazing!

TRUST GOD
from the bottom of your heart;
don't try to figure out everything on your own.
Listen for God's voice in everything you do, everywhere you go;
he's the one who will keep you on track.
Don't assume you know it all.
Run to God! Run from evil!
Your body will glow with health,
your very bones will vibrate with life!

~proverbs 3:5-8

P.S. a small note of importance: our tattoo adventure was discussed with DR H. obviously i had concerns about whether or not this was a wise choice at this time - he gave me 'permission' and the complete "A-Okay" stamp of approval :)

TAYLOR'S BOGUS BIRTHDAY ADVENTURE

today is (was) taylor's 17th birthday.
wow.
my son is 17.
hard to believe.



this year's celebration (his birthday gift) has been in the works for sometime...

careful planning
hours of preparation
nervous anticipation
weeks of counting down

and finally, finally, finally
today was here...

we arrived at our appointed time,
announced our arrival to the woman behind the counter
only to be met with a blank stare
and then came the all too familiar, ominously ironic response,

"ah, are you sure you've got the right date?"

"oh yes! today is his birthday! there is no way i'd have messed up this date!" i confidently exclaimed.

"i don't think so. our books say your appointment is for the 24th. do you have your appointment card?"

i pulled out said appointment card with shaking fingers

i stared and stared and stared
in bug eyed bewilderment

sure enough card reads "sept 24"

heart sinks
gut lurches
brow drips
mouth gaping
no sound
head in hands
complete fail

but should we really be surprised?

"wow! mom! seriously!"

OH IF THIS WASN'T SO TERRIBLY DISAPPOINTING...it would have been hilarious.
really! in my defense, we all know i am completely retarded with numbers. so why in the world do we continue to let me book appointments?

i should be completely banned from calenders!

that part of my brain, no matter how hard i try, just does NOT WORK!

unfortunately, the venue was fully booked so there was nothing we could do but count it a loss (oops, can't do that either!) and come back on the 24th!

so desperately anti-climactic!
and
i-ca-rumba!
i was already nervous about this birthday adventure.... and this delay has left me rattled and significantly more nervous about the whole thing!
add to that, graham jokingly bellowing, "it's a sign! it's a sign!" - as in "we shouldn't go through with it!" - has done nothing to alleviate my anxiety over the whole mishap...

yikes! there is no room for error on this one! none. zip. nada.

and poor Taylor!

albeit, he was (is) an amazingly good sport about the whole thing. it really was a huge let down...there has been so much build up leading up to today and this event was (is) our birthday gift to him. not to mention that last year's birthday, his BIG 16, was very disappointing for him. quite frankly, it was one disaster after another. it all worked out in the end ( after a month long delay) and ended up being worth the wait however his actual birth day dealt him several difficult letdowns.

so this year, i wanted everything to go off without a hitch and to be perfect...oh dear, quite frankly when it comes down to it, when it does happen it has to go off without a hitch AND be perfect! this delay had better be the only glitch!

sigh.
yeah, we're both feeling a little deflated over it but we're just "trusting" there was a reason for it to be this way...aside from my retarded brain!

and i keep reminding myself (and him) that it is the imperfect moments that make for unforgettable memories!

TRUST ME, mom...i will never let you forget this one!

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:

THOUGHTS FROM THE WALL

WALL OF HOPE
September 17, 2009

"a peaceful, quiet gathering of people held annually across our nation, in acknowledgment of those suffering with Lyme Disease and in remembrance of those who have died in their struggle with this insidious disease."

Vancouver Lyme Support Group's
"Wall of Balloons"
each balloon had the name of someone (in our area) that is living with lyme and was either too sick to attend, or out of country getting treatment or have lost their battle -

graham and i attended the Vancouver Wall of Hope on Sept 17.

it was a good day
it was a difficult day

it was great to be able to connect with some of the "old crew" from our support group. i haven't been able to make it to many meetings over this past year so it was wonderful to catch up with these amazingly courageous folks. it was wonderful to finally get to meet (and hug) my internet friend "LN"...a friend and fellow lymie whose emails of encouragement have meant so much to me.

furthermore it was hope inspiring to hear that some were not in attendance because they were at WORK.
recovered enough to work
now that is hope-inspiring!

treatment works.
period
it is horrible
it may take years
but
it works
people are regaining quality of life because of prolonged antibiotic therapy.
treatment works.
and sadly
people...MY friends
are losing their lives because of misdiagnosis and lack of treatment.


MY friends
are losing their lives to a disease that is preventable, treatable and curable if caught early.



their stories are my story



their stories are our stories...



and

their stories are why
the fight for better diagnostic testing and access to treatment IN canada is a matter of life and death

TAKE A MOMENT...

to say a prayer for my friend Tracie who lost her sister Leslie on November 2, 2008

Leslie Rae Wermers

remembered always

Saying Good-bye to a Warrior

TAKE A MOMENT

to visit this Lyme Memorial
a website dedicated to honoring those who have lost their battle

WALL OF HOPE

WALL OF HOPE
ACROSS CANADA
LYME DISEASE EVENT
Thursday, Sept 17/09

What is the Wall of Hope?

"It is not a militant wall...it is not a political statement...It is people, standing shoulder to shoulder, to share the burden of this illness and to remember those who did not have anyone to share the pain. We (Those of us with Lyme) all have the same story. The only difference between stories is each is personal...it happened to us...other than that we could put one story on top of the next and with the exception of small jigs and jags they are carbon copies of each other."

The Wall is for people...sick people...and their families and friends. It is not for activism or making a statement other than,

Help Us.
Stand with us.
We need you to join us so we can share the pain and the abuse.'

The rest of the story behind the Wall of Hope can be found here:
http://drerniemurakami.com/forum/index.php?topic=968.msg4769#msg4769


VANCOUVER, BC

We will be holding our Vancouver Wall Of Hope at the BC Centres For Disease Control (BCCDC).
They are located on 12th Avenue, west of Cambie St.

WHEN: Show up at 9:15 AM, next Thursday, Sep. 17th.
MEET: Corner of 11th Ave. West & Heather St. in the park.
(2 blocks west of Cambie, 1 block north of 12th Ave.)

We will be inviting the media, so turnout is very important. Please commit to show up!
This is THE Lyme event of 2009. Bring family, bring friends.

A strong turnout can get us on the evening news and spread our message to tens of thousands of people.
This is a great chance to turn the tide in our favor.


Wear green.
Pack an umbrella.
Bring two other people.
And your broken, indomitable heart.

VICTORIA, BC

Wall of Hope
Front Steps of the Legislation building
501 Belleville St
10-11:30am

KELOWNA, BC

Wall of Hope
Interior Health
1340 Ellis Street
(please note this starts at 1 PM)

TORONTO, ON

Wall of Hope 2009 -
Queen's Park / 17 Sept 10:00am

We are very pleased to announce that Dr. Jozef Krop (LLMD) and Ms. Helke Ferrie (medical/science author) will be speaking at the event. We will also be making a formal presentation of our petition to an MPP, which will subsequently be read in the Legislature.


SEPT 19

LETHBRIDGE, AB

Wall of Hope
Galt Gardens at the fountain
1pm - 3pm

OUR BONUS DAY

today (sept 4) was officially our last day in whistler
(this was confirmed by reliable sources)

since we thought yesterday was supposed to be our last
i guess you could say today was our bonus day

a whole extra day of holiday
yippee....not!
seeing as our bonus day now includes a gondola ride
i'm thinking i should a left when i had the chance!

i spent most of the morning worrying about it
my stomach in knots
bile rising in my throat
my mouth an acrid desert
my knees weak
and my heart pounding in my ears
whenever
i thought about getting on "the ride"



i'm not kidding either
i really considered hanging back today
yikes, don't say 'hanging'

back and forth my mind and spirit sparred
i did not want to scale that mountain!
no way
no how
no can do
however
it was not lyme that stood in my way

i am well enough
i am able enough
i am strong enough
no it is not lyme that would impede my ability today

it is FEAR
the choice is clear
how can i even consider allowing fear to hold me back?


my yesterdays have included the use of a wheel chair
my tomorrows may include many more

but
TODAY I AM ABLE...ain't nothing going to stand in my way!

"Come to the edge." he said
"We can't. We're afraid."

"Come to the edge." he said
"We can't. We will fall."

"Come to the edge." he said

And they came...

And he pushed them....and they flew.

-(Guillaume Apollinaire)

our bonus day...
has been so much more than just a breathtaking ride up a mountain

our bonus day...
has been about facing whatever mountains stand in our way and trusting God to give us the courage and strength to scale them.

"when faced with a mountain, i will not quit! i will keep striving until i climb over it, find a pass through, tunnel underneath or simply stay and turn the mountain into a gold mine, with God's help."

our bonus day?
well, i wouldn't trade it for the world

THE PRACTICE CHECK-OUT

this morning (thurs, sept 3) we checked-out of our hotel.
only to discover
we are actually booked in until friday (sept 4).

ha ha
all the stress of packing up and hauling all our stuff
groceries
toys
bike gear
clothing
taylor's library of books

all of it piled precariously high and dragged into the lobby on a luggage cart
all of it for not!

oh well
practice run, i suppose
at least we'll have it down to a fine art by tomorrow morning

graham and taylor dragged all our stuff
back up to our room
(grumpily moaning and groaning all the way)

and how could this happen anyhow?
easy
i got left in charge of the itinerary again
what were we thinking?
we weren't. obviously.
i, with the brain infection and lesions
i, with the lyme that impedes my ability to decipher numbers and dates, was left in charge of numbers and dates
what were we thinking?
especially after the missed flight disaster of hawaii
you'd think we'd learn!



this being what we thought was our last day we had planned on splurging and having a meal out
yes, throwing caution and my green goo to the wind, i planned on EATING FOOD today
REAL FOOD
ahem
more like fast food loosely defined as real food
NACHOS
yum, really good and really bad for me
i love nachos
and
they have world famous nachos in whistler at restaurant called Merlins
i cannot resist them
seeing as i couldn't eat for my birthday
we planned this as sort of a belated birthday dinner

we're thrilled that graham's cousin and family (who live in Whistler) were able to join us for my epic nacho binge

4 little goertzens,
4 mischievous little grins
not sure this mountain is big enough to contain all 4 of 'em!

we had a good time with Rod and Tanya and their 2 little cutie patooties, Zayden and Quinn. we've really enjoyed getting to know them better over the past couple of years. we appreciate their friendship ...and those boys and their smiles make me giggle.
(if you're ever in Whistler and in need of a good laugh or some really good licorice - make sure to pop into their store - Upper Village Market)

thanks to their generosity, we now have tickets to go up the blackcomb gondola tomorrow for our real last day

we've never done this before
graham is super excited
the kids are thrilled
and me, well i'm trying not to vomit at the thought of coming down the side of a mountain on an open air chairlift!
i am not a height person
freaks me out!
eek
the thought of me or my kids dangling miles above evergreen alpines and bears?
no seat belts to tie us down with?
ack

tomorrow, the hills will be alive alright... with the sound of my retching and shrieking

GET YOUR NOSE OUTTA THAT BOOK!

a huge reason for our desire to get away for this holiday was because we know that this could very well be our last summer with taylor home

this summer Taylor completed all qualifications for joining the military reserves and we just received word today (Sept 2) that his file has been accepted by the head recruitment office in Ottawa
sometime in the next couple of weeks, his status will be made 'official' in an enrollment ceremony

he will train with the reserves this year. then immediately following his graduation from high school in june, he plans to leave for boot camp in Ottawa and begin his career with the Armed Forces of Canada.

shriek
swallow hard
hiccup
hold back flood gate of tears threatening to erupt from my eyes

alright
enough with that
i'm on holiday and don't want to dwell on this just yet
i really can't
it is too painful
letting go bites
and besides he's with us now
and
so before i cue the sad violin music
i shall pull myself out of this sad reverie,
i shall BE in THIS moment,
i shall bond with my boy....or at least attempt to!

can you believe the boy has had his nose in a book for most of the past 3 days?

reading in the hotel room

reading in the village

reading in the hot tub

this morning i finally snorted and demanded,

"taylor get your nose outta your book and bond with your momma."

"wow, mom! i'm not rotting my brain playing video games or watching tv. i thought you wanted an electronic free holiday? sheesh, here i am expanding my brain by reading and you are telling me to stop?" came his piously cheeky response

argh
forget my soulful repartee on letting go..i want to strangle the kid!

72 HOUR MARK

last night was really rough.
.
fevers, chills, night sweats, joint pain and hallucinations.

i slept very little...
kidneys were working overtime
which meant hobbling to the bathroom every 45 minutes all night long

and the times in between?
they were spent hallucinating and enduring night terrors...any time i did manage to fall asleep i was pretty quickly jolted awake by my own screams

i have a rather large repertoire of varied hallucinations...
occasionally they are rather exciting - like the time Todd Bertuzzi showed up in my curtains
but generally speaking,
they are pretty scary and terrifying - i "see" all sorts of things
last night i had a tarantula fly off my bed onto the wall
and
sometimes they are weird (big surprise) - like last night the blankets in our room were illuminated in a strange green glow
made me think of superman and kryptonite.
too bad superman never showed up


somewhere in the wee hours of the morning, it dawned on me that these are hallmarks of a babesia herx for me
quick check of the time line confirmed it
it's been about 72 hours since i started my meds to fight babesia
i have always herxed at the 72 hour mark
just a little "baby herx" which is manageable and bearable because it is over relatively quickly (lasts about 24 hours) and is much milder than the "granddaddy of herxes" (can last 3 days or up to 8 weeks) that generally hits around the 14 to 21 day mark...

so baby herx behind me, the next few days i should see some general improvements in well being


yesterday avery announced that she had decided that we should have a 'girls only' breakfast on the balcony for this, our first morning in whislter

how many folks can say they've enjoyed a green goo girls only breakfast on a balcony in whistler (or anywhere in the world for that matter!)

NO BOYS ALLOWED.
she was very adamant about that

boys exiled to indoor dining.

after the night i had, it was a struggle to haul myself out of bed...
but it was so well worth it




after all, my girl can put a smile on face no matter how rough i feel