May 15, 2010


would be nice if the breaking news was that this was a long overdue update.
after all, it's been several weeks. again. sigh.
there is a lot of news to catch up on. sigh.


life it seems is an overwhelming series of physical and emotional ups and downs - experienced multiple times per day. i feel like i am on a giant pendulum that swings from high to low with little, if any, humdrum in between. the shifts happen so fast and so frequently that a celebratory leap in the air is often followed with a crash land back to reality - life, right now, is a conglomerate of cut you off at the knees pain & grief and celebratory moments of amazing, breathtaking ability.

i don't cope well with these frenetic shifts between high and low. i try to 'compartmentalize' but i find every compartment is affected and involved. somehow the good and the bad, the happy and the sad, all end up intertwined and i can't tease them apart long enough to write about any of it. in the few seconds it takes to boot up the computer, i've gone from elated to deflated and can't reboot myself...mundane, mundane, please give me the mundane...

sure hope i can find a few mundane moments in the next couple of days to carve out some time to sit and think and write about it all
until that happens, i wanted to share other breaking news...

and, no, it's not that George has been spotted in a tiara...but if this and the other photos contained in this post pique your curiosity then feel free to read on. it'll all make sense in short order.

we've had the honor of being featured in our local city newspaper. the Richmond News is doing a 3 part series on our family's journey with lyme. the first story came out wed (may 12), the second friday (may 14) - and i believe the final article will come out either mon or wed of next week.

this series came about because the kids in parker's class asked the newspaper to do a story about parker. (more about it is explained in the newspaper) parker has only been at school about 30 days total for this entire school year. that he continues to be in the forefront of his classmates thoughts is really a testament to his teachers, mrs s and mrs b's tireless and creative efforts in ensuring that he remain part of the class. from the senbazuru, the 'class made' soups, get well cards to the class blog (the list goes on and on) they have really gone above and beyond the call of duty. they should be applauded. given a standing ovation really. in fact, the entire school should be; from the parents and student body, the administration to the school counselor, mrs k and avery's teacher, mrs g; both of whom have been wonderfully sensitive and attentive to avery and have done an outstanding job in supporting and helping her cope. the school's willingness to come alongside us and walk this journey with us has been an amazing blessing. words can never express our gratitude. i am so happy that the Richmond News has acknowledged their efforts. alan, the reporter, wrote a beautiful and very fitting tribute.

Read all about it here: 1001 WAYS TO WISH GET WELL SOON

mona and napolean
2 grimly smirking companions

1001 ways to wish get well soon was actually the 2nd article in the series. but somehow i thought it seemed more fitting to 'lead out' with it as the first one here on the blog. besides, i seem to do things backwards lately anyway. the first article was about our family's life with lyme...and the first few paragraphs ended up being a fairly descriptive epilogue of our home. all i kept thinking while reading it was,

"thank goodness, i tidied up and swept the floors before the reporter came over. the guy is super observant."

my relief at having listened to my inner voice that morning was palpable. you see, i had seriously debated the necessity of expending my energy on tidying the house. as i surveyed my dusty, food encrusted floor i kept thinking,

"save yourself shan! who cares about a little dirt? after all these are men that are coming over. men don't notice such things."

ha ha ha ha.
apparently some men do.
and then, horror, they write about it.

is it marilyn or albert?

without further ado, and because i did the 10 second tidy, i give you the link to the article about our home and lyme:


(if you caught the vague reference to famous british humor - you are not mistaken. it is no coincidence that the article shares the same title as a monty python sketch. both graham and alan bonded over a shared love of all things python.) insert *me rolling eyes* here

both articles have been really touching. if you have a few moments to spare, we've been asking folks to please send a thank you to the reporter and /or if you or someone you know is fighting lyme please speak up by sharing a brief account of your/their story.

reporter's email:

Richmond News feedback:

this is a huge opportunity to thrust lyme disease into the lyme light. past experience has taught that if one media outlet's story generates a large public response than it is more likely that it will be picked up by other media outlets. indeed, no sooner had the 2nd article come out on friday morning, then we had a call from a reporter at the vancouver sun newspaper. not sure if anything will come of it but they are definitely sniffing around ;)

we certainly hope that the media attention will be one more loud clang in the alarm that lymies across north america are ringing and that it will eventually be the catalyst that provokes change - but more importantly, working to keep lyme in the glare of the public spotlight will bring about a greater public awareness. awareness and education about lyme saves lives. and that is really the bottom line.

1 comment:

Julie K. said...

What wonderful articles that have been written about your family....I will look forward to reading the 3rd article. And what a blessing to be a part of a community, and part of a school, that is so willing to help. I think that is so great that the class makes snacks for your family, and even makes soup, and they are thinking about Parker all the time, and even looking out for Avery. I really hope that these articles get read by so many people, and lots of Doctors, and they will realize what this terrible disease is doing to families like yours - and that people will stop having to fly to the USA for treatment.

Praying for you all! Take care!

P.S. How is your friend Marie McQuae. Do you see her when you are in the USA seeing your Doctor? Is she getting any better? I sure hope and pray that she is. I know you are so thankful to her family, that you could travel to the USA with them the first time.