DARE TO BELIEVE

we arrived home from the hospital last saturday afternoon physically exhausted and emotionally drained...with no respite, either physical or emotional, in sight. and then on top of it, i faced part of this past week on my own as graham had to head out of town for work.

right now, life is a litany of struggle; endless, exhausting, agonizing struggle.

i know my posts have been far and few between since christmas.
due in part to a setback/major flare of my symptoms (the worst of it between dec 26 to jan 16)
and
due in part to not being able to write about what life is really like now.
i've tried to write about it but only have myriad posts that remain unfinished, unpublished, cryptic belches of a few discombobulated thoughts of pain and anger. i just have not been able to choke it all out...somehow writing about it made it more real than i was able or prepared to face.
writing means i have to think about it.
in order to cope, i haven't really been able to 'think' about it. in order to function, i've just had to disassociate myself from this whole dreadful situation.
and
i've found the same has been true for graham and taylor.
this week i asked taylor how he was coping with parker's illness.
he said,
"i don't even think about it. i just can't. i can't even go there."

yet, he does what needs to be done - which means being called upon to carry his little brother from room to room.
we all do what needs to be done - but i've found out that you can do, you can see, you can carry the burden... without really thinking about it.

while i'm sure that this dissociative state of being we're all existing in is an act of self preservation, i know it's not a realistic nor healthy way to cope over the long term. at some point, the grim reality must be confronted and dealt with.

being in the hospital forced us to face it head on. ....and it broke down my carefully constructed disassociated barrier.

parker's deterioration over the past 4 weeks has been alarming.
he has not walked since dec 29...and had only been able to walk during "good moments" in the months that preceded december;

a"good moment" now means he is able to crawl on his hands and knees. if a "good moment" can be stretched into being able to attend school for an hour or two or (as we did this week) go to a movie. of late, good moments have been very fleeting.

a "bad moment", which his days are mainly comprised of now, means that crawling is not possible and he must resort to 'slithering' on his belly to get around the house;

an "unbearable moment" means he must be carried everywhere. even very short distances are not manageable in his own power. in these moments, he is not able to lift a fork to feed himself, lift a cup to drink from nor can he hold a pencil to write with. an "unbearable moment" means he lies on the couch moaning and writhing in pain.

the last 4 weeks have mostly been made up of "unbearable moments". most days, these "unbearable moments" stretch into hour after endless hour with no relief...and some days it is a roller coaster ride of a combination of these moments tumultuously tumbling over him in an unending and unpredictable cycle.

and we all live it - whether we choose to think about it or not.

THINKING about the breadth of it; the physical demands, the financial strain, the emotional toll, the horror of watching your child suffer, the lack of resolution to any of it - either to his or my health simply overshadows me, chokes out hope and makes me a stark raving lunatic who rages at the unfairness of it all...one who sees only what she doesn't have rather than what she does have.

any comfort, hope, joy i have or the ability to survive is found in God. the only way i've survived 4 years of my hellish co-existence with lyme, is by storming the presence of God.
storming means many things;
storming means panicked pleas,
storming means perseverance,
storming means praising,
storming means awestruck reverence,
and
sometimes storming means thunder..
as in me thunderously slamming the door behind me as i angrily stomp my way to the throne of grace and unleash in a tirade of heartbroken, dumbfounded fury.

thinking about the reality of our life, trying to come to terms with it, has prompted one major episode of thunderous storming over this past week.
the final straw?
the verse that was the focus of my devotional (this received on the day parker was released from hospital):

"and we know that God causes all things to work together for good
to those who love God, to those who are called according to his purpose." rom 8:28

that put me over the edge.
it made me mad, mad, mad
M-A-D mad!
i silently stewed and then spewed about it for several days:

"quite frankly, Lord i can't believe that you had me read that today, of all days. i am about to lose it.
sometimes i am receptive to hearing that 'cuz deep down i believe it -whether i feel it or not - but not today, and especially not in the context of parker and his suffering. that feels like a bitter pill to swallow. yeah, today that just feels like crap.
and
Lord, right now, if i am having trouble stomaching this from you. you had better not let anyone else tell me that 'all things work together for good' or ' just think of the fantastic testimony you will have to share"
seriously?
You and me both know that while You REQUIRE ME to glorify You, you don't NEED ME (or my story) in order to bring glory to Yourself
You are glory Lord.
i acknowledge that
but
enough is enough!

why does this just endlessly rage on? i am fearful to hold on to hope, to keep persevering through this and for what? to claw my way through another 4 years, 8 years, 16 years of this hell? and now parker must suffer? how long must he languish for? how can you hear his crying and not relieve his suffering? why do we have to face another difficult diagnosis? or face another diagnosis that is just ignored, minimized, down played and left untreated? this nightmare doesn't end. it just grows more and more desolate.

i don't get it.
i don't understand.
WHY? WHY? WHY?
why does it have to go on and on and on and on and on ?
enough is enough!!"

and then I DID IT...
I DARED GOD! :0

"AND HOW DARE YOU TELL ME TO BELIEVE THAT YOU WILL MAKE GOOD COME OUT OF THIS?" i screamed in anguish.

and then IT happened.
GOD DARED ME BACK!

through the words of a song, playing over the radio, that suddenly penetrated through my anguished and outrageously brazen venting,

"and hold on 'cause there's good for those who love God
but life is not a snapshot, it might take a little time
but you'll see the bigger picture

WOULD YOU DARE, WOULD YOU DARE TO BELIEVE
that you still have a reason to sing?
'cause the pain that you've been feeling
it can't compare to the joy that's coming"

there is no way that that was not meant for me.
it is far too ironic, too perfect, too funny to be ignored and not acknowledge as divine intervention

i spent the following hour feverishly trying to find that song. i finally did.
here it is in it's entirety or you can listen to it by clicking on this.

BEFORE THE MORNING
josh wilson

do you wonder why you have to feel the things that hurt you?
if there's a God who loves you where is He now?
or maybe there are things you can't see
and all those things are happening to bring a better ending
someday, somehow you'll see, you'll see

would you dare, would you dare to believe
that you still have a reason to sing?
'cause the pain that you've been feeling
it can't compare to the joy that's coming

so hold on, you gotta wait for the light
press on and just fight the good fight
'cause the pain that you've been feeling
it's just the dark before the morning

my friend, you know how this all ends
and you know where you're going
you just don't know how you'll get there
so say a prayer

and hold on 'cause there's good for those who love God
but life is not a snapshot, it might take a little time
but you'll see the bigger picture

would you dare, would you dare to believe
that you still have a reason to sing?
'cause the pain that you've been feeling
it can't compare with the joy that's coming

once you feel the weight of glory
all your pain will fade to memory
come on, you gotta wait for the light
press on and just fight the good fight
'cause the pain that you've been feeling
it's just the hurt before the healing
oh, the pain that you've been feeling
it's just the dark before the morning

even though i can only breathe through one moment, one snapshot at a time in order to survive this desolate, barren place, AND even though i can't see the bigger picture,

i still dare to believe.

SWEET RELEASE! YES!

we are home!
parker was discharged late this afternoon.

sweet release! yes!



parker has been released and remains in significant pain... and he continues to have episodes where it becomes pretty much unbearable - even the morphine he received in the hospital was not overly effective.
but
we have left with a comprehensive pain management plan. the doctor explained to us that parker's case is complex (parker's response to that - "gee, it only took them 5 months to figure that out!") and because he is still undiagnosed, this is not a treatment plan but a management plan. this is not a fix nor will it be a quick fix. it will take several weeks of implementing all the components of the plan before he will have any significant relief however, she (and we) are confident that this is a positive step forward. we are relieved and happy about that... and we are very, very, very exhausted. it's been a long 4 days.

as far as the "undiagnosed" part goes well... we are waiting for the results of the lyme antigen/DNA test that is currently being done on samples that were taken from parker in mid january. these tests are being done in a lab in the USA. the results should be back by the end of next week. please pray for this testing and the results.
and
something about dr big cheese's dismissal of the mycoplasma infection is not intuitively sitting right with me. so whether he does or not, i'll be reading and researching the medical literature on it...and i won't let it go until i'm satisfied and have peace that it's not contributing and/or the cause of parker's symptoms.

but for now, we all just need to decompress and get some sleep.

TAKE THE GOOD, LEAVE THE BAD

so we had a visit from the big top dog infectious disease doctor this afternoon. i knew the minute dr big cheese walked in that things would go as we expected and not how we had hoped.

most reading this will know the drill so i'm not going to waste my time and energy on going into detail about what he all had to say (or not say) about lyme. the basic gist of it is that dr big cheese gave us the same song and dance about lyme that we've heard a million times before. he doesn't know what parker has but he asserted that parker can't possibly have lyme because his canadian elisa test for it was negative and the elisa is an extremely sensitive assay.
if i could have a nickel, no scratch that. i had a penny for every time i've heard that crap dispensed i'd probably be able to cover my out of country medical expenses.
so while we are not surprised
always
always
always
encountering this bigoted attitude toward lyme is like being sucker-punched in the gut.

as the door shut behind him marking his exit, i picked up parker's stuffed prayer bear and threw it at the door.
"don't let prayer bear bite you in the butt on your way out. harumph!" i snarkily muttered - i launched prayer bear head long into the door, part out of disgust and frustration and part for comic relief.

it worked both graham and parker burst out laughing

PRAYER BEAR...

THE PIOUSLY PRAYING PROJECTILE

and the issue of mycoplasm?
dr big cheese said that parker's mycoplasma infection is old. this caught us totally off guard b/c docs yesterday told us it was an acute infection. big cheese said no. he said that he believes that the mycoplasma infection was probably responsible for parker's initial illness (the double lung infection that precipitated the start of all his symptoms way back in september)

even though parker was NEVER treated with the antibiotics specifically used to treat mycoplasma infection, dr big cheese will not treat him for it now. first, because it is no longer an acute infection and secondly because of the type of bacteria it is (cell wall deficient), he said that most antibiotics aren't that effective against it anyway (i'm still scratching my head on that one. after all, they've been drugging parker with meds that aren't that effective but that hasn't stopped them from prescribing them).

anyway, dr big cheese doesn't think the mycoplasma is causing his symptoms. although, he did suggest that it could be possible that the initial infection could have triggered some sort of autoimmune response. he said he would look through the medical literature to "see" if he could find anything about that. we're not holding our breath. neither graham or i believe that he will look.

so we're mad, frustrated, sad
but
not surprised.
thankfully, prayer bear has recovered from his launch through outerspace.

i'll go home tonight and have a good cry
and then i'll let it go
rise above
and
hope that maybe our story touched or tweaked the interest of even just one of the 15 to 20 doctors we saw today (yes, that many! 5 different specialities each with their accompanying fellow, resident and attending) plus a couple doctors that are here from china. serious. and not one could offer an explanation or diagnosis of his condition.

so while my gut is aching from that proverbial sucker punch, i'm trying to focus on what our motivation was when we brought parker into the ER on wednesday. our primary focus was and has been to get him some sort of relief for his pain.
and
for that, there has been a positive outcome. praise the Lord!

he was seen by 2 pain management doctors right before dr big cheese. the pain management doctors were great. one of them was a "DR O". he was super-compassionate and put together a good therapy plan. it consists of 4 components

1) meds
2) physiotherapy
3) psychology
4) complementary medicine - such as supplements and acupuncture

we feel really good about this. and double impressed that DR O not only asked about complementary medicine and what supplements we have parker on but actually suggested we consider and supported the use of acupuncture, naturopathic medicine and chiropractic care. could have knocked me over with a feather when we talked about that stuff- mainstream doctors generally 'poo-poo' alternative medicine. thumbs up for DR O! (incidentally, parker's teacher had given us DR O's name a couple of weeks ago, as she had heard through the grapevine that he is fantastic...we concur!)

parker needs the physiotherapy as he already has some mild atrophy in his calf muscles. when we explained this part of the treatment plan to parker, he wanted to know what a physiotherapist was and what they did. i explained that they were kind of like personal fitness trainers.

"so isn't that cool, buddy? you are going to kind of have your own fitness trainer to pump you up."
"oh," he said, " i'd rather we just got a Wii fitness console instead."
funny guy.

he's been extraordinarily amazing and brave through this all...the hospitalization, the endless questions from doctors, testing, pills, the installation of his "mini picc line" -


all endured while he lives with this never ending pain. that he can maintain his humor and upbeat attitude is pretty astounding. that's not to say that he doesn't have periods of intense sadness and frustration about being sick. over christmas, he told us that even in his dreams he is no longer healthy. and naturally, he wants to know why this is happening to him, when it will end and if he'll be better in time for basketball season in spring. we're glad that he can verbalize these feelings but they are really hard for us to hear and tougher yet because we have no answers to give him. we are certainly grateful that part of his pain management treatment will include a psychologist specifically trained in chronic pain issues.

so that's about it for today.
i think we've been seen by all the specialists. now were just waiting for them to co-ordinate his pain management treatment plan.
pretty much, just a waiting game at this point.




we've been told that they will probably be keeping parker over the weekend. yuck.but maybe we not. who knows. we're exhausted. he's homesick. we all want to go home.
but
all in all there was some good and some bad today.

we'll take the good
and
choose to leave the bad behind.

but should i ever run into dr big cheese again - he had better hope prayer bear is not with me.