PROCLAIM RESTORATION

Be this the purpose of my soul

My solemn, my determined choice:

To yield to God’s supreme control,

And in my every trial rejoice.

~anon

graham was out for a prayer walk earlier this week. as he prayed, "restoration" became the central focus of his prayer time.


restoration in the sense of healing for parker's body
and
restoration in the sense of restorative justice 


as he drew his prayer to a close
he looked up just in time to see a truck driving past
it was truck for a restoration business


it read
PRO-CLAIM RESTORATION

probably only in our lives would we take divine inspiration from the side of a truck but it was pretty cool

"proclaim restoration" 

has been our hearts prayer ever since. 

we ask that you join us in proclaiming restoration over our situation.

PROCLAIM: to declare in an official manner; state emphatically and authoritatively


we have both felt very strongly that God is calling us to "quiet action" - which has really meant actively seeking God and quietly waiting on Him and His direction. this week we felt the freedom to make our case 'known' in a more official manner and we took our first step into a process which we hope and pray will bring about some form of justice and restoration. with a click of a mouse and on a wing and a prayer, we sent out a 5 page letter that proclaims the travesty that has been done to our son and our family. 


please pray that the 2 recipients of this letter will be moved into action. pray for us as we once again enter a phase of quietly waiting on God's direction.

RESTORATION: renewal, replacement, restitution, renovation.


clearly, restoration of our circumstance needs to take place.

1. renewal; to bring back to a state of health, soundness and vigor. pray for the renewal of parker's mind and body

2. replacement; to re-instate. should DR H and DR D be unable to stabilize parker with oral meds, pray that access to IV treatment will be re-instated. we are boldly praying that God would make a way for our son's PICC line to be re-instated here in canada. (wouldn't THAT be something!)

3. restitution; restitution of something taken away or lost. we firmly believe that the wrong that has been done here needs to be made right. we are still praying for a brilliant lawyer to take on our case. 

3. renovation; to overhaul. the systemic bias against diagnosing and treating lyme disease is in need of a desperate overhaul. pray that our son's case will be instrumental in changing the landscape of hostility and denial leveled against lyme patients and that it would pave the way for change.

lastly, and most importantly,

PROCLAIM is also defined as "to praise or extol"

"Fill thou my life, O Lord my God,

in every part with praise,

that my whole being may proclaim

thy being and thy ways.

So shall each fear, each fret, each care

be turned into a song,

and every winding of the way

the echo shall prolong"

~Horatius Bonar

above anything else, we seek to bring glory and honor to God. it is only by the Grace of God that we are still standing in the midst of this storm. yes, i have moments, even days, when i am completely overwhelmed by our circumstance. i am only able to be lifted out of those moments by praising God. i truly sense His presence in a way i have not before. and in that, i rejoice. 

NO MORE STEPS BACKWARD

this has been a tough week


parker has now been without access to IV treatment for nearly 4 weeks
and
we are seeing a slow but steady deterioration in his condition

DR H and DR D have been trying to stabilize him with oral treatment but
clearly, this is not going well

his pain levels continue to escalate and have intensified enough to bring him to his knees on some days. he had not needed to rely on crawling as a mode of transportation in over 9 months. his fatigue levels have plummented and he is unable to get out of bed before noon. he is once again struggling with cognition functions and is beginning to exhibit more neuro-psychiatric symptoms. 


this past fall, there was a leveling out of his extreme symptom fluctuations and we were finally seeing some really solid, sustainable progress and an ability to resume some regular kid stuff - go to church and youth group, tackle (home)schooling, sleepovers, shooting hoops - and he was able to do those things with growing frequency. he wasn't well by any stretch of the imagination and he still had bad days but he was SOOOOO much better than where he had been. 


we are now seeing a return to the extreme fluctuations in his symptoms. his physical or mental health can go from functional to dysfunctional in the blink of an eye. just like the old days. these extremes can be hard to explain or help others understand. here's an example;


last saturday he felt well enough to go to church, so we went. afterward, he was still "ok", so we stayed to have coffee (ew, church coffee) and chat with friends. we were all sitting around a table visiting when very suddenly, parker was hit with a sudden flare of pain and impaired cognition. the pain was severe enough to drain the color from his face, he became faint and had difficulty speaking. graham needed to carry him out to our van. he spent the remainder of the evening lying on the couch moaning and crying out in pain.

This past week

i look at my son and the intense suffering he is enduring and it's hard to believe now that a mere 8 weeks ago, while he was still on IV, he had felt strong enough and able bodied enough to ski. having spent the majority of the past 2.5 years reliant on a wheelchair, it was truly a sight to behold and a feat that we marveled at and greatly rejoiced over.

8 weeks ago

what a difference 8 weeks can make.


we are heading back to seattle to see DR D on monday,
an emergency phone appt has been scheduled with DR H's office for wednesday
and
we'll be flying out to see DR H in about 4 weeks time


we'd appreciate your prayers. for wisdom for our doctors, for a treatment plan that stabilizes parker and for no more steps backward.

THE GIFT OF COMMUNITY

The word "community" is derived from the Latin ~communitas~ 

which is defined as 

'comm'="with/together" + munus="gift").

community is the gift of togetherness.

The word "community" as a verb is defined as 

sharing, participation and fellowship. 

in essence, compassionate care can be a by-product of community.

"Those who are not afraid to hold a hand, to shed tears in grief and to let a sigh of distress arise straight from the heart of their fellowman can break through paralyzing boundaries and witness the birth of a new fellowship"

this past week was bookended with community. 


at the start of the week, a couple that is neck deep in their own fight with lyme dropped by with hugs and gift cards for take out from parker's favorite restaurants. we were blown away by their thoughtfulness and generosity.

at the end of the week, we recieved a boatload of groceries from lymies from local lyme support groups. we've been unable to attend a support group meeting since the boys got sick 2.5 years ago, so many of the names that were on the card that accompanied the groceries were unfamiliar to us. yet, these dear folks took it upon themselves to come to our aid. as someone who is intimately acquainted with the toll that one short trip to the grocery store can take, i can well imagine the struggle and sacrifice this was. 


it's humbling to be on the end of that kind of sacrifice. it's been said that help often comes from the most unexpected of places. it does. and those with whom giving comes at great personal cost and sacrifice still give anyway. they do.  


you know, pain is messy and it's uncomfortable to be around. compassionately coming alongside of someone in crisis costs the support person(s) something.

"Compassion is hard because it requires the inner disposition to go with others to the place where they are weak, vulnerable, lonely, and broken. But this is not our spontaneous response to suffering. What we desire most is to do away with suffering by fleeing from it or finding a quick cure for it." 

when the crisis stretches on indefinitely and is lengthy, friends can burn out. their retreat is understandable but it hurts. have there been times along this journey where we have experienced that? yes. have we had times were we felt abandoned or experienced the sting of silence? certainly. but more often than not, we have found ourselves surrounded by a community of friends and strangers who come to our rescue. time and time again, folks have rolled up their sleeves and tirelessly waded into the wreckage of our lives.
  

"Let us not underestimate how hard it is to be compassionate. Compassion challenges us to cry out with those in misery, to mourn with those who are lonely, to weep with those in tears. Compassion means full immersion in the condition of being human.”   ~h.nouwen 

we are astonished and humbled that people continue to look outside of their own pain and struggles and choose to enter into ours. we recognize that it comes at great personal cost. it is an incredible gift and we are blessed and humbled by your compassionate care.


yes, community is a gift...
it is an immeasurable blessing of compassionate fellowship.


thank you.

MY BROKEN HALLELUJAH

this week, anger hit in full force. it welled up from deep within and emerged in a torrent of raging venom. 


i am angry.


A.N.G.R.Y


i awoke early monday morning
my mind racing, roiling, turbid with rancid thoughts
i struggled to work thru it
and
not let it get the better of me


i did the best thing i can
i opened my bible and i prayed
give me something, Lord
i can't cope with this 


i ended up reading psalm 55


reading it helped so much
my anger did not completely dissipate but i felt calmer
and
more aware that i need to keep my eyes on God and not focus on what man has done
and 
then it arrived
another letter
this one not threatening like the last
after all, that last one has already done damage
and
served their purpose


this one 
well this one just added insult to injury
rubbed salt in the gaping wounds
such cold arrogance for the pain and suffering their actions have caused
such callous indifference for the emotional terror their threats incited
such blatant disregard for the health and welfare of our son


i could barely read thru it
i saw the most vibrant, violent hue of red again


my heart beat with blind fury, my fists shook, my tongue spit venom, my mind thought up the vilest filth to spew in their direction, my heart conspired within me and all i yearned to do was inflict pain on them. the need for revenge raged thru my being 
and 
agonized screams and hot, angry tears erupted from within the deepest recesses of my body and soul
i screamed and cried out against this injustice, 
i screamed and cried out in defeat, 
i screamed and cried out in despair,
i screamed and cried out in agony, 
for all the pain and all the suffering and all the loss 


my mind and body and soul frantic and frenzied 
who could ever believe that those mandated to provide care could inflict such harm?
evil perverts truth
the war wages on
and
my mind replays all that we have faced and endured
was the denial of canadian care not enough?
that was unjust enough but we had come to terms with that 
but now "this" - going after and interfering with his american care?


it's just too much, too much, too much.


this situation is the grossest abuse of power and our son is the victim.
his suffering and pain has intensified since some of his treatment was forcibly stopped. and his deterioration is creeping in...he's had days where he's needed to crawl on his hands and his knees to get around the house again. he'd not had to crawl in 9 months.
he suffers the consequences of their actions and we bear the burden; the weight of their discrimination sits heavy on our shoulders
and 
they go on in their lives, covering their tracks with more lies
the deception so clever i wonder if it will ever be possible to get justice


it is all so outrageous and grievous
and
i get that it is okay to be angry
but
i am reviled by it 

if i don't keep laying this at the foot of the cross, this bitter anger will thrive and
i will not survive it

why?
because the hostility of my anger rises up and crowds out my ability to see God in this

  
and
praise God, He is present!
i feel Him with me
in every moment, in every hour, in every day, in every circumstance.
YES! even in "this"

"I often find myself in situations where if I look at the circumstances, it appears as if God is not there.

However, I’m learning that God is most powerfully present, even when he seems most apparently absent." (pete wilson, plan b)

He is here. He is here. How thankful i am to feel His presence. 
He is here. He is here. How thankful i am that i can trust Him. 
praise. 
glory. 
honor. 
to Him.
God reigns;
man does not
and
so i offer up to him, my Broken Hallelujah

With my love and my sadness

I come before You Lord

My heart's in a thousand pieces

Maybe even more

Yet I trust in this moment

You're with me somehow

And You've always been faithful

So Lord even now

When all that I can sing

Is a broken hallelujah

When my only offering

Is shattered praise

Still a song of adoration

Will rise up from these ruins

I will worship You and give You thanks

Even when my only praise

Is a broken hallelujah

Oh Father, You have given

Much more than I deserve

And I have felt Your hand of blessing

On me at every turn

How could I doubt Your goodness

Your wisdom, Your grace

So Lord hear my heart

In this painful place

Hallelujah

I lift my voice

Your Spirit moves

I raise my hands

I reach for You

GENESIS 50:20

"In the fullness of time, the mainstream handling of Chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.” 

- Dr. Kenneth Liegner

this is the husband here...and ok, my wife is providing the clerical support (hence, the obvious lack of capital letters). here is a very edited version of what we are facing. we still have to be somewhat vague, we trust you understand.


a children's hospital is interfering with our son's medical treatment from the USA.  without warning, and without consultation with our son's primary care doc (DR H), they made decisions to put certain aggressive and threatening plans into action to STOP our son's treatment. they claim his treatment is medically unnecessary and harmful. why? because they dispute his diagnosis. in their opinion, he does not have lyme disease. yet, they have no differential diagnosis to offer nor have a plan in place to investigate what, if it is not lyme, is the cause of his symptoms. it all boils down to medical difference of opinion and the politics of lyme. the differences of opinion happens in medicine. doctor's have differences of opinion. it is a patient's right to seek a second opinion and choose the best treatment option. 


in our son's case, the hospital (2 years ago) diagnosed him with "idiopathic" conditions. idiopathic means "we don't know what the cause is". their treatment plan was aimed at symptom control with narcotics, anti-depressants and psychology. many times, we requested they further investigate the cause of our son's deteriorating health. they refused...even when he continued to deteriorate under their therapy plan. it was intolerable to watch him waste away and suffer. we had him examined and all his medical files and tests reviewed by 2 other doctors (DR H and DR D). they determined the cause of his "idiopathic" conditions were babesia and lyme infections.

when our son came under the care of DR H, he was on death's door and was profoundly disabled. yes, he is still ill, but he is notably improved. the letter from the hospital failed to note or give credence to the fact that many of our son's "idiopathic" symptoms have improved and some have even resolved on the treatment prescribed by DR H. furthermore, he has not suffered adverse effects from the treatment. 


we know we are not the first family to face this. we have seen this type of action before with others and we sense it's a being made more from a political and "example setting" sense than it is a medical one. we acknowledge his treatment and diagnosis is controversial to some, but the way they are threatening to strong arm us is categorically wrong and unethical. it is also completely contrary and against the medical advice of his treating physician. we will be seeking legal advice. until we are able to set that in motion, and in order to protect our son, we have had to make some very difficult choices. the hospital's interference and demands put our son's safety in jeopardy. should we not comply with their demands, the fear is that the entities involved will "act first, ask questions second". yet, complying with their demands puts his very life at risk. either way, there is the potential for devastating consequences.


over this past week, DR H and DR D have spent many hours working on behalf of the best interests of our son. the gravity of this situation and risk to our son's well being has weighed heavily on us and his USA medical team. there is much that needs to be taken under consideration. we are so thankful for our USA medical team and their wisdom, dedication, care and support. over the past 2.5 years, we have had to take extraordinary measures to get our son the medical care he needs. we will continue to do so.


we are mentally, physically and emotionally drained. this whole ordeal has been traumatic for our entire family. as has always been, our greatest concern remains for the physical, emotional, spiritual and mental well being of our son. the suffering he has endured in his young life is unfathomable - and now "this". we could not shelter him from "this" as the threat of it is very serious and we have had to prepare him for what it could potentially mean. 


how do you help your child(ren) cope with the gravity of man's evil intent? we have had many discussions about the story of joseph in the bible and how he was sold into slavery by his own brothers. what a betrayal of trust that was...and yet, God was sovereign over the evil. He is sovereign over this horrendous circumstance as well. in genesis 50:20, we read joseph's response to his brothers:



"Don't you see, you planned evil against me but God used those same plans for my good, as you see all around you right now—life for many people." 

so we hold on to that...both for ourselves and our immediate situation as well as the many others that are suffering with this devastating disease. it has always been mine and my wife's belief that our journey with lyme is not just about 'us'. it is our prayer that our story and our fight will one day pave the way towards the diagnosis and treatment of lyme in canada for canadians.


this past week has been undeniably shocking, frightening and indescribably infuriating. we have catapulted thru a cascade of emotions from volatile outrage to gut wrenching grief...BUT God is in control and He is our very present help in time of trouble and we have already been witness to some of the ways in which He is creatively orchestrating events and we seek to bring glory to His name in the midst what appears to be a catastrophic storm.


we want to thank those of you who have spent many hours in prayer, phoned, sent emails or messages and continue to support us in tangible ways. that means the world to us right now. please don't stop. 


some of you have asked how you can help. thank you for your offers. 


this is what need at this time:


we are tired, battered and bruised. some days we feel fragile...but we are not broken. however, we do need folks to wrap their arms around us and love on us.


we need meals.


we need to hear that we are in your thoughts and prayers. you don't need to know the 'right' thing to say, just let us know you are out there.


we need folks to be in prayer.


we need to process our anger. we need to vent. we need to cry. we need to scream. yet, we desire to do that in a manner that upholds the values that are important to us. we have no desire to let our (justifiable) anger and rage take root in our hearts. 


we need and are looking for a lawyer; specifically a charter of rights/civil attorney with a legal interest/experience with medical law. please pray for that and for God to provide the finances needed.


finally and importantly,


if you feel compelled to come alongside in an "advocate type role", we ask that you touch base with us directly and privately...this is an incredibly sensitive and delicate issue. we absolutely need for what we are going thru to be handled with great care, discernment and wisdom. there is a time to speak out and there is the time to strategically and quietly go about business. for the time being, we believe it is imperative to handle this as discreetly as possible.


again, we wish to convey our deepest gratitude to each of you. we have been hard pressed to respond to your messages as our time and energy is incredibly taxed...but we do read every message that comes our way and they do make a difference.


  

PSALM 17

it was worse news than we expected or had even feared. 
So. Much. Worse. 
we are not really able to elaborate publicly at this time...we are asking that you pray a hedge of protection around our family. 


we are so grateful for your support and prayers. 
they are desperately needed. 

psalm 17

Hear me, LORD, my plea is just; 

   listen to my shrill, piercing cry! 

Hear my prayer— 

   it does not rise from deceitful lips. 

Let my vindication come from you; 

   may your eyes see what is right.

Though you probe my heart, 

   though you examine me at night and test me, 

you will find that I have planned no evil; 

   my mouth has not transgressed. 

Though people tried to bribe me, 

   I have kept myself from the ways of the violent 

   through what your lips have commanded. 

My steps have held to your paths; 

   my feet have not stumbled.

I call on you, my God, for you will answer me; 

   turn your ear to me and hear my prayer. 

Show Your marvelous loving-kindness, 

You save by Your right hand those who trust 

and take refuge in You 

from those who rise up against them.

Keep and guard me as the pupil of Your eye; 

hide me in the shadow of Your wings

From the wicked who despoil and oppress me, 

my deadly adversaries who surround me.

They are enclosed in their own prosperity 

and have shut up their hearts to pity; 

with their mouths they make exorbitant claims 

and proudly and arrogantly speak.

They track us down in each step we take; 

now they surround us; 

they set their eyes to cast us to the ground,

Like a lion greedy and eager to tear his prey, 

and as a young lion lurking in hidden places.

Arise, O Lord! 

Confront and forestall them, cast them down!

 Deliver my life from the wicked by Your sword,

By your hand save me from such people, LORD 

   

As for me, I will continue beholding Your face in righteousness 

(rightness, justice, and right standing with You); 

I shall be fully satisfied, 

when I awake to find myself 

beholding Your form and having sweet communion with You.

LORD, GIVE ME A FEARLESS HEART

this has been a stressful week


last week, while we were in the middle of researching options for PORT surgeries, i got a call


at the other end of the line was the receptionist from our GP's office;
"DR A" would like you to come in to discuss a letter he received from children's hospital about your son.


i nearly dropped the phone


"this can't be good" was the first thought that pounded in my ears


of course, unlikely as it seems, this letter could be something 'good' or at the very least, it may be about something inconsequential. yes, i could have my shorts all in a knot for nothing...however, i fear this letter contains a sinister plot... 


today is where the rubber meets the road
i will see DR A this afternoon and whatever this letter is about will come to light
and
i am SCARED


why?


i am scared that a certain pediatrician at children's hospital who has been incredibly vocal about withdrawing antibiotic treatment and has been pushing to remove parker's PICC line has succeeded in backing DR A into a corner.


i am scared that this meddling pedicatrician has the power to force DR A to write an order to remove parker's PICC line.


i am scared we are about to lose the little support that we do have here in canada. 


i am scared an order has been written to remove parker's existing PICC line and withdraw homecare nursing support.


i am scared that if we have to move forward with getting parker a PORT, that we will be blocked from accessing even basic nursing care for it here in canada. 


these fears are not unfounded. it's a long story as to how or why each of those fears is a possibility. the short of it is this - while DR A is supportive of the treatment parker is getting from DR H, he is not able to prescribe parker's meds nor can he order a PICC line or a PORT. however, he did assist us in getting nursing to care for parker's PICC. doing so, made him responsible for it - which means he can be held accountable - and yes, 'forced' to order it's removal. the medical community here is so hostile against lyme that the few doctors that do have the courage to walk alongside a patient with lyme, are targeted by their colleagues and licensing boards and subsequently raked over the coals by them. 


i am scared 
and
yet, i TRUST.
albeit
i wonder if my trust was truly solid, would i have such struggle within my soul with fear?


quite frankly, i'm tired of the fight. i'm tired of all this crap. i'm tired of hurting. i'm tired of being abandoned. i'm tired of the roller coaster. i'm tired of being at odds with the medical community here. i'm tired of being fearful of doctors. i'm tired of learning tough lessons.

i'm NOT tired of experiencing the amazing ways in which God works. i'm NOT tired of watching the miraculous ways in which he moves time and time again. i'm NOT tired of knowing that i can trust Him in ALL of it.


i pray i can face today with a fearless heart.

FEARLESS HEART

                                                        ~point of grace

For even the most trusting soul

This world can be a scary place

So much that we can't control

In every moment that we face

When a thousand what ifs

Whisper in our ears

We remember who's we are

And watch them disappear

I wanna live with a fearless heart

Courage that's coming from trust in God

It's constantly guiding me though the road may seem dark

I wanna live, wanna live with a fearless heart

There are worries chasing everyone

It's evident in times like these

But I have found the confidence that comes

From time I spend on my knees

There's a truth I'm holding onto

As these days unfold

Greater is He, that is in me

Than he that's in the world

He's my strength, He's my shelter

He is with me all the way

He's my light and my salvation

Of whom shall I be afraid, of whom shall I be afraid?

I wanna live with a fearless heart

Courage that's coming from trust in God

It's constantly guiding me though the road may seem dark

I wanna live with a fearless heart