January 30, 2010


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)
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i've tried to write about it but only have myriad posts that remain unfinished, unpublished, cryptic belches of a few discombobulated thoughts of pain and anger.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.
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,
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.
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"

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
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 does it have to go on and on and on and on and on ?
enough is enough!!"

and then I DID IT...


and then IT happened.

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

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.

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.


Nonerz said...

oh man Shannon, this just leaves me breathless...

Kristie said...

You are a far better person (christian) than I. Thank you for your courage to be so utterly vulnerable.

Maria said...

I don't have words to reply or comment on what you've said; but I had to write something so that you know - I hear you.

I'm daring to believe along with you.
Thanks for sharing this stuff with us.

My New Life said...

Dearest Shannon,
Rage all you want to or need to, honey. God is bigger and more loving than we can imagine. Your anger, hurt, pain and bewilderment do not dent one tiny atom of his love, so let out all you need to in order to cope with this ridiculous burden.

Never be ashamed of how you feel, of times of doubt and 'daring', because your fighting spirit is what will bring you all through this. None of us can see the bigger picture at the moment, but I share your belief that there is one. I know this does not make it easier to bear but hold on, sweetheart, you are a warrior of the soul, and your journey is a difficult one here and now.

When times are easier, you will have more times to blog - until then, make your family your priority, and update us when you need to unload it all. We are here for you. Keep strong.


tammystreasures said...

Shannon - I could have written this post myself! My husband, myself and our 2 teen daughters are all doing battle with Lyme. Read Psalm 30 OFTEN! I like to read Job too. We can certainly relate with what he went through. Sending big hugs to you!!

Anonymous said...

Thanks for putting a stake in the ground and declaring that you dare to believe. Words cannot express an accurate understanding of what your journey is like but God alone knows and He obviously communicates His understanding & love over and over again. Thank You for your sensitivity to His voice and your willingness to walk the walk and not just talk the talk. Love Betty

Renee said...

Just want you to know you and Parker and your family continue on in my prayers. You are coping the best you can. Your circumstances are so horrible....We do what we need to do to get through what we need to get through.. This disease is so destructive and so are the MDS who choose to ignore it.
May God show mercy on you and your son..

Lori Bergen said...

Shannon, I'm an old friend of Graham's from CBC days and I've been following your blog for quite some time.
This blog burdens my soul.
Your lamenting is being heard but the question is still "why".
Thank you for your honesty, I am praying for you, Parker and the rest of your family.

Anonymous said...

wow....i do not know how or why i stumbled upon ur blog but it sent chills up and down my body and brought me to tears. i only typed in the lyrics to that song to figure out who sang it and the title of it. my best friend recently lost her mother at 18 years old...i heard that song on my way home from work one day and i just knew that song in particular was what she needed to hear. i admire your faith in God, our stronghold. dont lose it because he wants you to give him your every fear and every worry. and there is no doubt in my mind that you will become a stronger person and glory will come in the morning. my heart goes out to you and your family and i will keep you in my prayers. i do not know the particular verse but the Bible says "God does not give you the children you need, he gives you the children that need you." So hold and just fight the good fight.
God Bless, Heather

Anonymous said...

Anon. #2!
Well isn't this just like God...I'm not sure whether to cry or laugh!
I also just heard this song for the first time on the radio tonight as I was driving home. I just lost my Grandpa 2 weeks ago and am going through some personal struggles, that include finding out my "Christian" mother (who's been married to my Dad for nearly 30 years) has become involved in an affair with another man...
Anyway, I was trying to find this song and stumbled upon your blog.
What an incredible testimony! God bless you for sharing...it is amazing how God speaks and ministers to us through others we haven't even met.