WE'RE OKAY!

it's been a long day.
we left the house at 8:30am and arrived home just before 10pm
but
just wanted to leave a quick update here
and
let you all know that today went well.

sparky's procedures went smoothly. there were some minor hiccups but no major complications. 
praise the Lord!

the surgeon and nurses were awesome. he was in really good hands - it was a very full OR.

in the OR getting prepped

we are so very appreciative of the messages we received via FB. your prayers, love and support really helped to carry us thru today. we're exhausted but sparky is doing well considering all that he has been thru.

in recovery

will pop in over next day or two to share more details.

ON GUARD

last nite my hubby dreamed of the royals.
he is not a royal watcher.
so this is odd.
(personally i think it's odd whether you are a royal watcher or not)

to my great relief, he did not dream about having tea with the queen.
that would have taken it from odd to weird and creepy.

he was at buckingham palace hobnobbing with prince harry.

according to graham, prince harry is a rather funny chap.

so the dream continues...
he and harry were just shooting the breeze, enjoying an easy going camaraderie within the privacy of the palace.
he refuses to divulge any details about their chummy conversations as he says i'm not privy to royal rhetoric.

harumph.

but this is the part he would tell me about;

he and harry were getting along grandly until a disheveled man in a surgical mask burst into the ballroom they were in.
turns out the masked man was a surgeon.
he was haphazardly holding all sorts surgical supplies
and
he began excitedly waving them towards graham and yelling,

"check this one out! this is what i'm going to implant into your son!" 

graham immediately felt alarmed

"ummm, that hose-thingy looks about 12 inches too big in diameter." he nervously stated.

"oh, no it's the perfect size. and it's your lucky day - this is the last one!" the surgeon cackled.

graham eyeballed the unusual device... the "out-of-its-sterile packaging, swinging-thru-the-stale, damp air of a 300 year old castle" device

with his heart in his throat and mouth dry as a desert, he managed to squeak out, "ummm, i think i need to run this past my wife. that, ummm, doesn't look quite right to me but she's the one with the medical expertise."
(that's my favorite part of the dream)

he remembers that moment in his dream, 
the sheer panic 
and how he couldn't think straight
and
how his limbs went numb
and
his movements became slow and methodical.

he fumbled for his cell phone
and
then just stared at it.

he had know idea how to work it.

he turned to his buddy, the prince, "do you have a phone i could use?'

"sure thing." came prince harry's lilting british reply, "there is one in the palace infirmary. come along now, mate, follow me."

then began the walk through endless, winding corridors. carried on trembling knees and spaghetti legs. buckingham was more cavernous warehouse than palace.

finally, they reached he infirmary
and
the phone.

the giant rotary phone

graham kept trying to dial
but 
wooden arms
and 
fumbling fingers
made it next to impossible

just at that moment, the queen came in and proclaimed,

ok, so the queen part of the dream is not true... but it would make the story that.much.better
however
it does provide a perfect segue from dream to reality.

reality is that sparky will undergo 2 procedures in the USA tomorrow (tuesday).

my hubby's bizarre royal dream is a clear indication that we are all pretty stressed. (either that or he is eating way too much cheese before bed)

we are asking for your prayers - 

for safe travel
for the procedures to go smoothly
for the recovery & healing process (2-4 weeks)
and
all the specifics that we can't go into detail with because we have to be a bit "on guard".

the procedures will take place from noon to 3pm. he will require sedation. we are concerned about this as he has a mast cell disorder called MCAD. this means that his body can be hyper reactive to certain medications and puts him at risk of going into anaphylaxis. because of this, he is on a regime consisting of prednisone, benadryl, ketotifen, cromolyn, ranitidine and cetrizine. the prednisone is a steroid and is not ideal with lyme because it suppresses the immune system. however, it is a necessary evil at this time. the other medications are part of his normally prescribed treatment plan to control his MCAD. the dosing has just been increased with them.

we are thankful for the medical team - the surgeon and 2 nurses that will be assisting. they have bent over backwards over these last 2 weeks to make all the arrangements necessary. we believe that they are well equipped and prepared to handle his unique case.

it has taken several hours worth of phone calls and consults to make this happen.  i have talked at length with the head nurse. we have had much trepidation over this. we have prayed and wished and hoped that this would not be a needed step on our journey, yet here we are. once again, faced with the challenge of taking a leap of faith. graham has been much more sure-footed than i.  however, during my last phone call with the nurse, i did finally have a sense of peace wash over me - but, to be totally truthful, in the last 24 hours, i think it washed right over me and kept going... 

we are nervous. sparky is scared. it's a lot to handle.

yet, we trust God goes before us. walks beside us. and stands behind us.

please keep us in your prayers

and, of course,

God save the queen.

BETWEEN A ROCK & A HARD PLACE

we're dealing with a worst case scenario.

sparky's veins have been collapsing for the past 4 weeks & using peripheral IV lines to administer his meds is no longer a viable option. this means he cannot receive IVIG treatment & because he has not been getting his doses of IV antibiotics, his health is de-stabilizing. 

the only option left is to get a vein study & PICC surgery done in the USA...but this is complicated by action taken by children's hospital. just over a year ago, they made threats that culminated in the removal of the PICC line he had in place at the time and they then instituted roadblocks designed to keep us from getting a new one put in - either in canada or the USA.

a year later, we still live with their threats echoing in our ears and fear the consequences.

when this all happened back in february 2012, we blogged about it here but never went into full details. we remained vague for good reason, at the time, we were absolutely traumatized. dumbfounded. blindsided. terrified.

we were between a rock and a hard place.

sparky went without IV treatment for the next 3 months.  

his deterioration undeniable.
his suffering agonizing. 
the cause of it criminal.
their interference was incomprehensible.

despite, DR H's best efforts to stop the decline with oral abx, sparky spiraled downward without IV abx
and
we knew, without a doubt, that he needed that which had been unjustly removed. 

but how?
we were between a rock and a hard place.
but God...

it was by way of miracle that God provided a way out of that rock and hard place situation. the peripheral IV plan was our miracle. our way out. our way of getting sparky the treatment he needs. 

now his veins have crapped out. even when they get a line in, it quits working in short order or his body just rejects them. no one could have ever anticipated that this would occur.

last week, the doc tried to access his vein 6 times...but to no avail.
even after enduring all those pokes, sparky piped up,

"too bad i'm not an octopus. at least we'd have a few more options."

i am continually amazed at how he maintains in his humor in the face of suffering and adversity - he truly is a unique and unusual kid - but, unfortunately, his uniqueness does not include 8 arms.

and so,
we are between a rock and a hard place. again.
but God...

we pray and wait for God to make a way out.

over the past 3.5 years, we have had to go to extraordinary measures to get sparky the treatment he needs. 

we will continue to do so.

and God has moved in extraordinary ways to provide a way thru.

we know He will continue to do so.

GIVE THANKS IN ALL THINGS

the message blinks across the screen
i blankly stare back
one person registered for our photo fundraiser
eyes brim
heart sinks

give it 24 more hours
i pray for numbers

"lord, please, we really need this."

i trust, hope & pray
that at the 11th hour
all will be redeemed

hours drag by
time ticks my hope away
the silence is deafening
the extra day does not bring numbers to save the day
a click of the mouse and it is done
event is cancelled


suddenly, i feel very small and insignificant

He breathes a 5 word phrase into my ear
"give thanks in ALL things" 

my eyebrow arches
arms fold
emotion runs tumult
thank in the midst of this?
this confusion
this rejection
this abandonment

my mind wanders 
to what was supposed to be
to THE day that will no longer be
in my mind, it had been built up big
i envisioned a communal coming together
to bear witness to a miracle
surely it would be
a faith builder, spirit lifter for all involved

He prods me gentle 
"give thanks in ALL things" 
in the pain 
in the disappointment 
in the loneliness

in our home
it was talked of with anticipation
we hoped, we prayed, we imagined 
a time, a place, a moment to see, to feel, to document tangible support
a way to off-set every moment of aloneness this journey has brought
and
now
now nothing

i heave a sigh
push back chair
must share news with the boy
how does one deliver news quite like this?
break it gently?
break it blunt?
matter of fact or pollyanna it to death?

i.want.to.run.
ignore it. avoid it. 
pretend it never really existed to begin with.
let days flow by
let THE day float by and hope it goes unnoticed

maybe he won't remember

i want to spare him the hurt
spare him the tumult emotions
and
then the faintest thought tumbles through my soul

spare him and deprive him of the chance to learn thanksgiving in ALL things.

and
i guffaw. snort. churn. 
and spit back
what? thank that there is no crowd to stand in the gap for my boy?
(mercy, how does He not grow weary of my pestilence?)

"I stand in the gap and I am all you need. Your plans are fallible, mine are not." 

but i fear, oh how i fear that the news will be a spirit crusher. 

my boy bows his head
and
furrows brow
he is processing the news
and
from a far away place and in a quiet voice, he utters that which i feared he would think

"I don't matter and no one cares about me or lyme"

my breath is knocked from me
and 
i. am. gutted.

how do i respond when those very same feelings howl through my own heart? 

all i can do is say, "i feel that way too"

i pull my boy into my arms
and
we sit in heavy, aching silence
with all the ugly feelings swirling loud around us

He pursues me relentless,
"give thanks in ALL things" 

why is the automatic thought to turn on oneself? the default set to believe that we are unworthy and unloved. 

what is the yardstick by which we measure our worth?

how do I reset the dial to default to God first, foremost and always and who He is and who we are in Him?

He breathes the answer into my soul
"give thanks in ALL things"

and
days pass before i dare to whisper this to my boy,

"God is telling me to give thanks in all things."

it tumbles out hard and broken and questioning

"i don't get it
and
this is hard
and
i don't want to 
but
i'm going to try."

somehow and someway
i must choose to do this
to thank
in the pain
in the disappointment
in the middle of this ugliness

i pull pen and paper
there are thank yous
to be written
to be counted
to be spoken

and
as i write
as i count
as i speak thankfulness

something shifts
i breathe in thanksgiving
and
exhale rejection
and

as the ink flows
the tears dry
and
the spirit is raised up
and
i seek to see this verse in word
and
there it is in 1 Thessalonians 5:18

give thanks in all circumstances...for this is God's will for you

for this is God's will for you
and
does God not want the best for us? is that not His will?

would he require His people to have thankful hearts in all things to satisfy His ego or because it changes ours?

an act of thanksgiving in the midst of a sad, confusing, messed up circumstance is a declaration of our trust in Him...His ways, His goodness, His love, His faithfulness, His sovereignty
and
therefore, ingratitude is an expression of mistrust.

thanksgiving is the act of a heart that believes, that knows beyond all doubt,  that God is trustworthy in all circumstances

and

maybe, just maybe, all that i wanted this to be and all that it is not is all that it needed to be and that is where the miracle is birthed from