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.