October 27, 2011


“We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be.” 
                                            ~ C.S. Lewis

last week, we headed to seattle for appointments with DR D.

both DR H and DR D suspect that parker and i have an underlying condition that is impeding our fight and recovery from lyme and company. this disorder is a seperate issue from lyme, but it may have been triggered by it. i hate to be vague about what it is but right now, i feel the need to be.

for several reasons - 

#1 we're just learning about it and have a whole lot more to learn.
#2  right now, our diagnosis is clinical. we will be undergoing some lab testing but this will take some time as the testing can be a fairly involved and lengthy process...
#3 we have an atypical presentation of this suspected disorder. we are hopeful that lab results will aid in providing a more definitive diagnosis however, just as we've learned firsthand with lyme, lab testing is not always conclusive. (argh) 

why blog about it if we're not "talking" about it?!?

...because we're about to embark on a journey that is requiring a tremendous step of faith and we need prayer. big time.

we are moving forward with treatment for this specific disorder...even before lab results are in. a positive response to the medications will be more confirmatory than lab results AND the medications themselves are fairly benign, meaning they do not have risky side effects associated with them. 

there are 4 primary meds our docs will be using to treat us. these will be staggered in over the course of the next 3 weeks. a slow integration of medications will allow our doc's to track whether or not there is a response to the meds. most likely, it will take another 6-8 weeks before we can expect to have a clear picture of whether or not these meds are working.

so why in the world blog about it if we don't know anything for sure?!? 

...because there is faith and hope but there is also fear and doubt and we are having to step beyond the "what ifs"...

let me be really clear, it is not the treatment for this disorder that we fear...rather, it is the fear that it will not help...that it is not the missing link that are doctors (and we) suspect is impeding our recovery.  

there are no easy answers. we don't know whether this disorder is part of the problem...but we feel very strongly that God has lead us to this place. i hate to label things a "God thing" but certainly we feel very strongly that God has orchestrated the events that led to this possible diagnosis yet we have huge moments of great fear and doubt -  

what if we are totally off the mark here?
what if this is not the missing link?
what if this treatment brings no relief?
what if we're no better off in 6 weeks than we are today?

the prospect of facing that is a crushing fear...this has been a long, grim, fierce, unrelenting battle...and over the past several months, parker has begun to lose hope that he will ever be well again. he is tough, has persevered and overcome so many obstacles. he has endured so very much all the while maintaining his great humor and gentle, sweet, caring nature. in many ways, he is so much better than where he was 2 years ago...but he still is so sick. his life is still very, very, very far from 'normal'. and he is losing faith that he will get better...or that anything will help him. THAT is horrendous place to be. for him... and for us. 

the extremely difficult circumstance is that we cannot promise parker that this treatment will work. we cannot promise him that this is the missing link that will push him past the hurdle and propel him towards the finish line of this marathon fight against lyme and company. we cannot promise him that he will be able to get back to the business of being a kid before his childhood is done.

we simply don't know what the outcome will be
we do know that God is sovereign over this 

we feel at peace with moving forward in this next step of treatment...and yet we continue to wrestle with the many "what ifs"...

what if a non-response to this treatment throws parker into a tailspin of undulating hopelessness? 

what if, in the feebleness of our humanity, we've misinterpreted God's leading?

what if stepping beyond the what ifs doesn't end the suffering?

what if...what if...what if...

the "what ifs" are a painful, disheartening and scary prospect to consider 
the "what ifs" are precisely why i felt compelled to blog about something i'm not yet talking about.

we need your prayer and support to step beyond the what ifs and have the courage to keep moving forward whatever the outcome.

stepping beyond the what ifs is a matter of faith and trust.

faith in God requires we step beyond the what if's... even when we fear the steps may not lead to the outcome we desire
trust in God means believing in His best, in His mercy, in His goodness...no matter what the outcome.


Jessica said...

Please know you have love and support even from those you have never met. Your faith in God has been an inspiration and He does have a plan and a purpose. I will continue to pray for your family. Thank you for sharing. Continue to trust in Him.

Jessica said...

Praying for you and your family. I wish I could do more. Your faith is truly an inspiration. Continue to trust in Him. He does have a plan and a purpose.

Jude said...

I will be on your team of pray-ers regarding this what if. Thank you Shannon for continuing to blog.
See you in the Throne Room.