September 25, 2010


where do i start? where do i begin?

it’s been a long time since I blogged. too long. i know. not since june 12. wow.
obviously I can't expect to catch up in one post – but where do I begin? do I pick up where I left off? or simply drop in after a near 3 month hiatus and just plunk out the latest? the more time that passes it becomes harder and harder to know where to pick up the story from.

i’ll start with the obvious...

A LOT has happened since my last post. that you’re all caught up on the past, i can move on to the present.

kidding. ha ha.

but seriously, not knowing how or where to start is paralyzing. kinda like trying to catch up on that long neglected scrapbook - time gets away on you and when you have so much to catch up on, it becomes totally overwhelming. it's probably the reason why taylor - who turned 18 THIS WEEK, has only the first year of his life documented in a scrapbook. i am frozen with indecision.

where do I start? do i start at the beginning and work my way to the present or do I start with the present and work my way back? and all the while I am trying to decide between starting with the past or the present - the present becomes past and there is a whole other day, week, month to catch up on.

and how'd i end up in this predicament to begin with? what in the world happened? what precipitated my self imposed blogging exile anyway? in a lot of ways we had the most incredible summer - we were blessed to be gifted with several mini get aways - these times were priceless and far too precious to not have an entire post exclusively dedicated to them. and in a lot of other ways, well, it's just been hard. really, really, really, really hard. quite frankly the reasons, both positive and negative are multifaceted and complex. bit by bit, i intend to break it down over time. for now, i need to break in slowly and briefly...

here’s the briefest of briefs on our health over summer:

Parker made some good progress – albeit he has a long way to go. but he was OUT of his wheelchair for 14 straight days in august. we celebrated those days and braced for impact when they ended. he still suffers incredibly on a daily basis but his suffering is interspersed with periods (hours) of relative wellness. given his overall progress, we were hopeful that he wouldn't need IV treatment. that has not been the case. we leave tomorrow for SF to see DR H. on Tuesday at 1:30pm, parker will be undergoing (minor) surgery to have a PICC line placed so that IV treatment can start. the surgery will be done by DR C in san jose. he and we have great anxiety about this. it is scary. it is tough to face. tough enough to finally bring me out of my blogging exile. after all, we're gonna need an army of prayer and support to get us through this next week.

Taylor didn’t start aggressive treatment until july – so he has had a bummer of a summer. that has been really, really hard for him and us. at a time when he should be preparing to leave the nest, he is completely cooped up. however, on the bright side of things, i don’t know too many moms who can say their 18yr old son spent more time with them than with their friends this summer. that is nice. they grow up too fast.

physically i had the best summer since getting ill in 2006….june was horrendous but july was magnificent. i had 3 weeks where I was 90% symptom free. that was remarkable. a first to be at 90%! and then for it to last so long. it was pure bliss. I made up for a lot of lost time with my kids. the boys weren’t always up to doing much, but avery was always game. we had many "girls only" adventures. she often remarked how nice it was to have a mommy who could play with her.

august brought with it more sunlight and the hope that maybe, just maybe, the good days would continue to outweigh the bad. i had one really rough, as in flat on my back, herxing week each of those 2 months – the rest of the time it fluctuated somewhere b/n “so-so” and “90% symptom free”! after what I’ve lived with even the “so-so” felt extraordinary!

emotionally, this has been and is the toughest, roughest, rawest time i have ever gone thru. my progress has been remarkable, yes, yet celebration of that is tempered by watching my boys lose their ability. there have been a lot of tough, dig deep, all hope is lost, types of moments over the past 4 years but nothing comes close to the toll it takes when watching your kids suffer. nothing.

really, at the heart of it, i guess a huge part of my self imposed blogging exile has to do with an inability to write about any of it - both the joys and the sorrows. after all, celebration so very often ends abruptly and the fall is far and the landing cruel. in order to cope, i just had to shove most of my emotions into the furthest recesses of my mind. something about me sitting down to write always forces me to delve deep - and I just couldn’t spare the energy to do that – it has been an immense struggle to keep my emotions in check and i feared i would come completely unglued if i faced them in black and white...

i'm relieved to see i've not come unglued as my thoughts have made their way back to the page. that's a start.

maybe I can catch up. maybe I can face my life.

past, present, everything in between.

yeah. maybe, just maybe, i’m back from my self imposed blogging exile.

it's good to be back.


Renee said...

So good to "hear" from you again, Shannon. Amazing to hear how well you were feeling and the progress you and your youngest have made...Hope for the oldest to do the same...Welcome back...

VictoriousVixen said...

so glad to see you blogging again. I'll be keeping you & your family in my prayers as you continue this journey. Sending you good thoughts & virtual hugs!!!