Wednesday April 20, 2011

(This was originally written as an e-mail to family)

When tragedy strikes there are so many things that come up.  Things you would never consider - mostly rooted in incredible efforts of support.  Tonight I am kept awake by this concept of communication.  So I grabbed the Ipod and the laptop and headed for the fireside recliner and I write.  I'm learning that writing is really good therapy for me.  You should know, nothing is sent without Jen's blessing and her most practical and sensitive editing.  That's good.  No doubt - I need a filter!

Today we had a mostly great day with the girls.  There was downtime to rest up for Thursday for Shannon and family around in small dosage.  There was a soccer practice with Erin's Fireballs that went really well, fun.  We play our first game Saturday morning and Jen and I - along with our good bud Bart Grafstrom (Bloomington Lincoln class of 1981 same as Dan) - are coaching and think we might have a really fun group.  Coaching rec soccer can be a challenge.  You just never know how 11 girls from all over SE and SW Rochester will blend.  So the Fireballs will become part of our narrative over the next 6 weeks...ironically the season will pretty much span the exact length of Shannon's radiation treatments.  Our one crack at frying the shit out of this damn brainstem glioma.

We returned from Wednesday night's practice to find Aunt Connie, Grandma Gwen and Aunt Megan folding our clothes while watching Secretariat with Shannon.  The scene brought me to tears.  So special.  Honestly, just a little snapshot into our completely whacked out new life.  But there is gratitude and a new appreciation for amazing little things going on all around us.

So back to this topic of communication.  Jen and I are learning how deeply embedded we are in this community.  I suppose, both of us were born here and both of us have worked in fairly high profile professions for many years in Rochester.  I spent 13 years on TV and Jen has taught tennis to literally thousands of kids over the last 20 + years.  Many of them sons and daughters of so many of Mayo Clinic's brightest stars.  Go figure.  Jen's nearly photographic recall of names and faces of kids she has taught over the years never ceases to amaze me.  Just like the other day when I shared that our radiation oncologist Dr. Laack came in to tell how how she was going to attack Shannon's tumor and Jen asked; "Are your sons Soren and Xavier?  I taught them tennis!"  I know personally, nothing softens me up like someone that tells me they know my kid.  I sensed Dr. Laack was taken aback.  Cool.  What a blessing.

So needless to say there are alot of people that know us.  Know of us.  And it seems as though they all want to know what's going on with Shannon - all at the same time and we are kind of freakin' out about how to manage the communication.  How can you be mad about that?  In our new whacked out world, nothing softens me up like someone that asks me how my kid is doing.

But so many people feel compelled to tell us what they would do.  How Caringbridge was a great forum for them when so-and-so's son or dad was sick.  Did you know there is Caringbridge?  Did you know Mayo Clinic offers a site for you to communicate information to family and friends?  We get it.  And we know you want to know what's going on (not allowing a Jen filter here) but we're not here to provide you a forum for you to feel better about yourself by posting a reply that is more profound than the one above it.  We have witnessed a couple experiences with these types of forums where the site just gets hijacked by people who want to feel better about themselves by going on and on about a kid they've never met.  Another risk we have learned from others is that after a couple weeks or so if you become just too exhausted to post - then the replies come enmasse: "what's wrong?  Is everything OK?".  Still I know many others have had tremendous experiences with those sites. 

That's kind of happened on Shannon's Facebook a little.  Today she just lied around and didn't even try to keep up.  Jen recognized that maybe Shannon is realizing the gravity of the situation based on the way people are posting.  We hope that's not the case.  We were hopeful that it would be a source of inspiration for her.

Don't be confused.  We are so touched by the outreach.  We are just exhausted by all of this and tomorrow is just the beginning. In my recovery program we talk all the time about planning the action not the outcome.  I know, I'm guilty of planning the outcome.  So Jen and I are sounding this out. 
Today's song that I love and have played over and over; Ingrid Michaelson's Maybe. Klenex please.   Remember when you first fell in love and EVERY song seemed to have lyrics written just for you?  That's where I am right now.  I too have been finding Jen reclining with music in her headphones more and more here over the last few days.  It is how she has been ending her day. That's great.  She loves her music and her playlists are where I find goodies like Ingrid Michaelson.  Jen is so cool.  My inspiration.  Our leader.  Shannon and Erin are just budding with confidence and self-esteem - in part because of that great security blanket they call Mom.  

I'm not sure how much longer I can blubber like this, I'm not sure I can hold up and keep finding the energy to write.  But it seems as though if I just get started it all comes out.  That's the other challenge; I probably will require more filtering for a publicly posted blog.  That sucks :)  But we'll see - once again - plan the action not the outcome, right?

So tonight we put the kids down and came up to log off, listen to some music, wind down and prepare for a big day tomorrow - and we hear footsteps coming up the stairs - it's Shannon closely followed by E. With really bright eyes - not a hint of tearing or sadness - Shannon says; "OK, I need to know right now - am I going to die in the next 6 weeks during radiation?"  Oh my God.  Poor little angel.  We assured her that the next 6 weeks were going to make her feel better - that the radiation and chemo might wear her out after a few weeks but initially she will feel really great.  And then we will see.  We assured her that the reason she pounded out the MCA's was to be set up for 8th grade...we'll make choices on sports, activities, etc. based on how we are feeling at that time.  Day at a time.  Oh, we love that kid sooo much.  She has taken on an almost angelic persona with her words and actions.  God has blessed us with so much...but sonofabitch...

Jason Mraz A Beautiful Mess is now playing...

OK - It's go time!  We're coming for you get your shit and get!