IT REMAINS UNSEEN

parker continues to do poorly overall. his pain levels and rages are intense and have remained significantly increased since this downward spiral began in mid october. our doctors have implemented countless approaches and nothing touches the pain. parker is at the end of his rope. evenings are the worst. many are spent with him whimpering or moaning in agonizing pain. 

the nystagmus that parker developed at the end of september also continues. 

there have been many theories as to what is causing it but so far no treatment approaches for any of the possible causes has helped. 

the results from the MRI he had in december came back clear. we were fully preparing for and expecting different results. we are incredibly relieved there is no tumor and that his brain looks "fine" but it is frustrating that the cause of the nystagmus remains unclear. 

on dec 27 we saw our first neuro-ophthalmologist (NO). he gave parker an incredibly thorough exam. he was very perplexed and intrigued by parker's case. he said he had never seen anything like this but noted that he mainly sees adults and that nystagmus is most often a childhood issue. while the MRI results provided some assurance that there is not an urgent issue behind the nystagmus, he felt it was necessary for parker to be seen by a pediatric NO. he was concerned enough to personally phone this doc in order for us to bypass the 4 month wait-list. we were seen by the physician assistant (PA) of this new doc for a preliminary assessment on dec 31 and were scheduled to see the actual doctor the following week.

the PA did the initial intake exam. it was very, very short. this surprised us as the referring doc had spent a solid 30 minutes examining and re-examining parker's eyes.

i felt that the PA was not taking enough time to observe therefore was not seeing the whole picture. i tried to diplomatically explain the symptoms and how they present. i know my kid's condition. i have been observing and monitoring it for nearly 5 months. 

she acknowledged that what we described was highly unusual but that what she had observed did not appear to be as severe. she then concluded that if the severity was diminished then maybe it was starting to go away.

"no, it's not diminished at all." i stated, "it was very intense last nite and right before we arrived this morning. it was present 4 days ago when he was examined by the previous NO doc. he saw it and that is why he referred us to your office."

I paused for a minute and then carefully added,
"the nystagmus is intermittent and fluctuates quite dramatically. one has to watch long enough in order to see all of that."

my suggestion that she had not yet seen the full presentation of parker's symptoms was ignored.

"hmmm, well, his MRI was fine. maybe this is a voluntary thing." she paused, gave parker a long, hard stare and then cryptically inquired,

"parker, are you making your eyes do this?" 

both graham and i nearly launched off our seats at her. 

yes, sparky has super powers and can make his eyes frantically rotate and vibrate on command.
that is absolutely absurd.

we almost did not return for our scheduled appointment with the actual doctor.  

but we did. 
we know that all his other doctors are concerned enough that we need to follow up. 

when we arrived the following week to see the doctor, she gave him a cursory once over and initially appeared to jump to the same conclusion that her assistant had. however, this time we did not mince words nor try to be diplomatic. i simply insisted that she needed to spend more than 5 minutes examining his eyes. i told her i would stand behind her while she examined his eyes and that she needed to watch them until i saw what we have been seeing for past 5 months. thankfully, she listened. she re-examined his eyes - (with me breathing down her neck) and then she saw it.

"oh," she says, "i see it. no! that is definitely not a voluntary movement."

no sh*t sherlock. glad we cleared that up. 

she then took video footage of his eyes and has forwarded it on to a 3rd neuro-ophthalmologist. according to her, this doc is the 'eye movement guru'. we are scheduled to see this new doc on february 18.

we wait. we watch. we feel as though we helplessly stand by under the unrelenting assault of this disease. there has never been an understanding of why this is happening but i've always determined within my heart that i would choose to see God in it. the longer this goes on, the more difficult that becomes. 

i contemplate.

i hear the faint buzzing drone of a lone summer wasp
i look for it
and
see it caught behind blinds in the bedroom of my son
it steadfastly bumps against the window pane 

seeing out yet not seeing the way out
it's perseverance admirable
it's stupidity obvious

my mind cycles round and round in an endless loop
the plight of the bee is lost on me
swallowed whole by the noise screaming within
an exhaustive assault of conflicting thoughts 
i seek you God
but do i see you?
some days yes
other days no
too frequently not

vision shrouded by the depths of the midnite blackness
the blackest of all black 
no light penetrates and 
so remains the mystery of God
unseen yet seen

behold creation in its splendor

i see Him in the rich golden hues of autumns color, 
i hear His creation in leaves crunching underfoot
i feel Him in the blustery winter's wind, 
tearing eye and blanching cheek
God is good
life is ugly

close eyes to the ugliness
shut out the messiness
endless suffering
torment of mind, body, soul
God is Good?

i float in misery
in the waves of the mystery
restless i stumble along unseeing
body, mind, soul do not beat as one
they war and they fight 

in an endless internal tug of war 
my tumultuous existence questions His ways

somewhere someone prays for sunshine
somewhere someone else prays for rain
same moment in time
clouds part
sun streams down 
"praise God for answered prayer" shouts one
is the other left to ponder their non-answer?
why one and not the other? 

mundane requests appear to be answered every day
what i perceive with my finite human mind
leaves me questioning the answers
when He answers
how He answers

i hear offered praise for answers;
the child that has arrived safely 
or 
the baby that slept thru the nite, 
or 
the job, the apartment, the car, 
or so it goes

we pray for healing
and we wait
we prayed for an MRI 
and had no wait
praise God for that answer
but
wait

that answer revealed nothing
only brought more misery in it's wake
red, raw, blistering, burning skin
that was an answer we did not need

my troubled mind whirs on 
His ways are not our ways
no kidding, Lord
will this life ever make sense?
can it?
should it?
how do i live without question? 

can i live in hell yet still see God?
how do i watch my child's endless suffering and still see God as good?

He is just
sovereign
all loving
He is good

some days, i find that hard to believe

what about the mother who prayed for her child's healing?
what is in her heart, her mind, her soul
as she lays her sweet baby to rest?
lays to rest in the cold, harsh earth
death
such a benign term for the most unnatural finality 

my child lives
i praise God for his life
but at what cost?
he lives an unearthly existence

confusion
convulsing heart
racing mind
i rage
i cannot see
i spit furor at what my eye sees

i'm on my knees
face flat on floor
sobbing, begging, roaring, pleading
heal my child, Lord

nothing changes
everything changes

my baby lays crumpled on the floor
a writhing heap of endless suffering
3.5 years
a childhood lost
innocence squashed under the punishing blows of unseen forces


God, today, my boy told me he doesn't think You love him

my very being collapsed within me
i cradle my crumpled, sobbing, endlessly aching child
i hold him tight
i weep, i cry, i grieve that he must wrestle with feeling abandoned by you

my fevered brain, my scorched heart, my sinking soul
searches for answers with finite mind
seeks for the truth amid twisted feelings
i seek to see for him, for me, 
i do not see the purpose
i do not see the plan
i question "this plan"
how can this even be "the plan"?

then a vision shifts into view

i see a cross
a crumpled, broken body
i hear 
"my God, my God, why have you abandoned me?"
God's own son knows our pain
slain for our gain

God's plan for our greater good

oh how He loves us
He loves you
He love me
He loves my son
with an infinite love too consuming for finite mind to comprehend


the answer is Jesus
there was a plan
there is a plan
even when it remains unseen

i watch
i wait
i pray

i pray
i wait
i watch expectantly

one day we will see

DARE TO MOVE

i had hoped to head into the start of the new year with renewed energy. umm, yeah. that didn't happen. the holidays came and went in a haze of pain and a flurry of doctor's visits which included an emergent one on christmas eve. that one prompted because parker developed a second rash (again, due to MRI contrast dye). this one was painful, raw and blistering and necessitated the need for a course of steroids. the following days were swallowed up in the agony of unrelieved suffering.

yeah, the holidays sucked the life out of me. ran me over and left me flat on my back and emotionally flatlined. i still haven't quite managed to scrape myself off of the floor yet.

for the most part,
parker's 13th birthday was a fail.
christmas was a fail. 
new years was a fail.
and
i have succumb to the misery.
it's temporary not terminal

my appearance on here today is an indication that i'm coming up for air.
that shows promise.

i feel like my life is one bad game of whack-a-mole
keep resolutely popping my head above ground 
only to have it repeatedly bashed back down

it's difficult to find the will or desire to keep getting up off the floor
and
facing each day
life is hard
a new year has dawned
yet the old has followed us in
2013 is earmarked as year 7 since this all began 
7 years that have been 
heavy on pain;
light on joy.
heavy on suffering;
light on freedom.
heavy on despair;
light on hope.
heavy on tears;
light on laughter.

i want a pause button
i need to catch my breath
to right myself
to steal myself
to face 2013
to pick myself up off the floor
and
dare to move

takes courage to face a new year
to renew hope
and 
embrace whatever lies ahead

i know life changes
things never stay the same
but
i'm still waiting for it to not hurt so bad

life changes
i see it in the lives of those around me
and
when i'm this deep down
all i see is the upside of another's life
totally defeatest attitude

funny how that happens
i see life in the lives around me
i see them heavy with celebration;
light on hardship.
heavy with happiness;
light on sadness.
heavy with thriving,
light on surviving.


i hate feeling this way
i'm embarassed to even admit it
this jealousy, this poor me, 
this invisible divisible way of being
this 'i'm cursed, you're blessed' way of thinking

it creeps up on me and seeps into my mind 
skewing my view and wreaking havoc with my soul
it burns my psychological skin
puts my gut in a iron clad grip
and
wrings my heart out like an old, decrepit wash rag
the lingering effects are such a struggle to shake off

i've tried to hold on to this fight in the most positive light
allow it to mold me into a better version of me
now
i lie here in turmoil
a twisted wreck of bitter thoughts
crumpled soul
fists clenched tight
tears blaze a hot trail 
dripping a steady stream into the puddle of unfairness and injustice... 

when will the scales tip in our favor?
when will our life have have less pain, more joy?
when will the milestones of life not just be another day to endure?

dare to move
stagger
claw
scrape 
out of this pit

one day this fight will be done, the war behind, and the day will break into a glorious new dawn. only by God's grace shall i stagger forth from the rubble and decay to greet that day as one who is better not bitter.

Welcome to the planet
Welcome to existence
Everyone's here
Everyone's here
Everybody's watching you now
Everybody waits for you now
What happens next
What happens next

I dare you to move
I dare you to move
I dare you to lift yourself up off the floor
I dare you to move
I dare you to move
Like today never happened
Today never happened before

Welcome to the fallout
Welcome to resistance
The tension is here
Tension is here
Between who you are and who you could be
Between how it is and how it should be

Maybe redemption has stories to tell
Maybe forgiveness is right where you fell
Where can you run to escape from yourself?
Where you gonna go?
Where you gonna go?
Salvation is here

I dare you to move
I dare you to move
I dare you to lift yourself up off the floor
I dare you to move
I dare you to move
Like today never happened
Today never happened
Today never happened
Today never happened before

THE ITCHY ANSWER

OK. let me lead off by saying that detailed accounts of our experience with the documentary film crew are in the works. i jotted down notes throughout so i wouldn't forget the events. which is a good thing because we actually ended up filming for 3 days. one day in california and two days in our home. it was a whirlwind and much of it passed in a blur of emotions...i needed some "down" time to process it all before i could even attempt to formulate my random thoughts into a cohesive and entertaining read. however, 'down' time is hard to come by - even on a 'good' week. and the week or so since our return things have hardly been "good".

actually, it would be more accurate to say that it has NOT been ALL bad. indeed, we had a wonderful but itchy answer to prayer in the week since our return.

i am happy to share that our (and your) prayers for an MRI for parker were answered. it took a major fight and much perseverance but i am happy to share that parker has HAD his MRI. praise God! 

sparky about to get his much prayed for MRI

let me break it down...
first we asked for prayer that he get an MRI quickly. not an easy thing to come by in canada. the waits are notoriously long. add to that the complication of getting one for a pediatric patient OUTSIDE of the children's hospital but WITHIN the public health care added an extra dimension of challenge to the mix. the request was made in middle of October. the first referral to hospital in our city was rejected. they did not do pediatric MRI. this delayed even a processing of our doctor's referral. this meant another round of calls to find a hospital that would do one.

finally, one was found. however, because of the aforementioned delays, the referral was not sent in until the beginning of November. it took another week and more phone calls for it to be processed and an MRI to be scheduled. the date of Jan 11 was a relatively short wait. but we still felt that that was not short enough. we continued to request prayer and pray for a shorter wait. two days later, we were re-scheduled for dec 11.

we were thankful... but we continued to pray that this new date would be rescinded and we'd get in even earlier. during all of this, parker's vision issues were getting progressively worse. knowing the possibilities of why this could be happening had us anxious to get an MRI done ASAP. so yes, even the dec 11 date for an MRI (which at that point was a mere 4 weeks away) felt way too long a wait.

then, of all things, the hospital had a flood and as a result, the MRI machine was destroyed. who could ever anticipate such a thing? i could but couldn't believe it!! that kind of stuff just happens to us - the most bizarre roadblocks just pop up in our life and keep the road challenging to navigate.

parker's MRI was cancelled and no alternate date was given. at all. this brings us all the way up to when we left for california (nov 27). we were even making calls in the airport, scrambling to find yet another hospital. just before we boarded our flight, graham was able to find a hospital. he called our doctor's office and asked them to fax the referral to this new hospital. i might add here, that it is not normally the patient's job to find a place for their doctor to send an MRI referral. however, parker has fallen thru the cracks so many times that we have found it is necessary take on many roles when it comes to negotiating and advocating within the system.

upon our return from california (dec 1) we learned the MRI had been scheduled for april 2013. this was terribly upsetting news. again, we made more phone calls. 

it was stressful. 
it was draining. 
it was uber frustrating.
it was physically and mentally exhausting to persist in holding those in the medical profession accountable to appropriate and timely follow through. 
however, 
in the back of my mind,
i somehow dared to consider something impossible...
what if, after all of this, he actually ended up getting his MRI earlier then the dec 11 date? hadn't we been praying that that date would be rescinded?  i certainly hadn't prayed for a flood but what if... (i assume no responsibility for it occuring)

i had a conversation with the Lord about it. albeit, a slightly perturbed one. 

"ok Lord, along with a multitude of folks, we've been praying that parker's MRI date would be moved up from dec 11. today, is dec 4 and we now have a scheduled date for april. what are you up to?"

on dec 5 the hosptial called and told us they had an opening for parker to get his MRI on december 7th!

this answer to prayer made me laugh and cry.... even as i write this, it still makes me well up with tears.

unfortunately it has made parker itch like mad.

the rash begins

5 hours after having the MRI, parker had a (pretty severe) allergic reaction to the contrast dye used in the MRI. at least this was not an unforeseen speed bump, we had anticipated this. two reasons; 

first, he had a reaction (but milder one) to xray dye 2 years ago. a past reaction tends to mean you'll react in the future - and those reactions can become progressively worse. 

second, he has a Mast cell disorder called Mast Cell Activation Disease (MCAD). This disorder puts him at a greater risk and predisposes him to allergic reactions and anaphylactic shock. (you can read about MCAD here and here - this post will be too long if i go into a detailed explanation of this disorder.) 

this disorder is not curative but there is treatment that helps to control the disease. the treatment protocal includes daily doses of multiple anti-histamines and other medications that are "mast cell stabilizers". in addition to his standard doses, parker was pre-medicated for the MRI. meaning, his doses were doubled up in an effort to stem off a severe reaction. we continued to medicate him with these increased doses and added in another anti-histamine afterward

we are thankful he did not have an anaphylactic episode. we suspect that the medications stemmed that reaction however, he has been COVERED from head to toe in hives and an itchy, angry rash for nearly a week now. it is a horrible reaction and has flared all of his other MCAD symptoms plus his lyme; he is continuing to endure severe bone and joint pain, fatigue, bouts of diarrhea  nerve pain, flushing, mild shortness of breath, shaking chills.

sparky's back

about 18 hours after it started, it seemed to be going away however in short order, it returned with a vengeance. this was very disconcerting. with MCAD, there is always the fear of anaphylaxis. most folks are familiar with the more common or typical anaphylactic reaction that usually takes place within minutes of an exposure to an allergen. MCAD and/or systemic mastocytosis patients can have an anaphylactic reaction take place days after the initial exposure. based on that and the fact that parker was maxed out at highest doses of multiple medications and the rash was progressing and continuing to get worse, we finally made a visit to the ER on sunday afternoon.

Sparky at ER

going to the ER was not a decision we made lightly. going to ANY hospital is the last thing we want to do. we still live with the fear that what children's hospital did (threaten to call in Child Protection Services & MCFD in an effort to remove parker from our care) will happen. i cannot explain what it is like to live with the fear that taking your child to the hospital for medical help feels unsafe and dangerous.

graham told me afterward that he was on high alert and in "fight or flight mode" the entire time we were in the ER. i was blessedly not as stressed about it. MCAD is a "recognized disease" in canada (DR H, our USA doc originally diagnosed it but we are now seeing a canadian allergist/immunologist for treatment of it) that being said, it falls under the umbrella of Mastocytosis which is classified as an "orphan disease" meaning it is a rare condition. therefore the ER Doc did not know a whole lot about it. he was fairly dismissive of us because parker had no respiratory issues. the ER Doc did tell us that prednisone (a steroid) is some times used to curtail an allergic reaction but he felt that use of that was a decision that was best left up to parker's immunologist. fair enough, i suppose. 

Sparky's arm - 4 days after it started

i know that prednisone is often used as a last resort to treat MCAD patients. however it is contraindicted when one has lyme. in fact, steroids and lyme can be a lethal combo. it is not a treatment we would implement lightly and certainly didn't want to face a decision about using it unless we had spoken with DR H first. so, even thought we felt like the ER doc could have done more, we are glad that we felt the need to fly under the radar whilst in hospital. biting our tongue rather than pushing for immediate help probably kept us from having to make a decision about the use of steroids and that would be a precarious position to be in.

we left the ER with instructions to follow up with parker's immunologist. which we have tried to do. this has proven to be a very upsetting endeavor.  we are not exactly happy with this doc. furious is more accurate. we do not have an emergency contact number for him. but we have been leaving messages at his office since Sunday. it is now wednesday and we have not had a response. i am absolutely bowled over by this negligence. 

sometimes i really struggle with the feeling that my kid ALWAYS falls through the cracks or worse, has been kicked to the curb by many doctors. 
why don't they freaking care?
i don't know why i still seek or need that validation from the mainstream canadian medical community. when i get fixated on that, it is easy to overlook the fact that we do have doctors that are working on parker's behalf. furthermore, they often go above and beyond the call of duty.

even the soles of his feet and palms of his hands are covered

we contacted all 3 of parker's lyme literate docs. DR D and DR H responded within hours. DR C got back to us - even tho' his office was closed and it was his day off. yes, our sparky boy is in good hands. that's a good thing because he is a very sick kid.

Getting IV support at DR C's office

 we are implementing the treatment protocals that DR H and DR D prescribed. DR C is assisting us with this. these will be started today (wednesday) at DR C's office. if parker's rash has not improved by friday than he will have to start a short course of prednisone. it is DR H that made that treatment recommendation. he has (already) prescribed it. we are scared to put parker on predisone but trust DR H's expertise in navigating this type of tricky medical decision. we would not want it any other way. 

so, we have til friday for things to turn around.
for the rash to get better.
for the itch to stop

i pray that they do.

after all, friday also happens to be parker's birthday. 
and it's a big one.
thirteen.
i'd love for him to have an itch-free day.
becoming teenager is hard enough.