Wednesday September 25, 2013

Sometimes the crazy in the world just takes hold, and things don't seem to make sense.  

The big news the past day has been a US Senator who spent 21 hours speaking on the Senate floor, accomplishing nothing, and wasting everyone's time.  Not to mention mass shootings in a shopping mall in Kenya and a park in Chicago.  It is unsettling when the order in the world seems to be in chaos.

On a much smaller scale, in my own little world, there's been some crazy going on, too.  For example:

Two weeks ago, I spent some time on the phone trying to get through to the IRS and find out why our Shannon O'Hara Foundation exempt organization application has not been approved.  This has been a long and frustrating process as we first submitted our forms in January and were told February 1st that we would know within 90 days.  Then the IRS "dumped" our application from the system.  Meaning, it inadvertently wasn't being processed for over 3 months.  Now, they are ready to process it, but the fee has gone up, so it requires an extra $100.  And, of course, they don't take credit cards, so a check had to be sent via snail mail.  Really?  We are just a lowly local organization trying to do some good.  Can you please just expedite this process...

Last week, my Mayo Clinic bill arrived and after all my dental work was completed and sent through insurance, I was left with over $6000 to pay.  What the what?  It seems that my insurance company agreed that the three titanium posts I had put in were a medical necessity as a result of the medical condition I had, osteomyelitis, so those were covered by insurance.  But, apparently the dental implants - the teeth - that go on these posts are not considered a medical necessity and therefore, are not covered by insurance.  So, you're telling me I need the posts, but I don't need to put anything ON the posts?  Needless to say, countless hours are being spent in correspondence between me, the WFMC, and my insurance company.  I'll keep you posted... no pun intended...

Yesterday, I spent over two hours dealing with two different banks.  It seems my bill pay from one bank never arrived at the second bank, which happens to be where our mortgage is held.  It seems the check was lost in the mail.  What?  You mean, they mail a check from one bank to another?  I just assumed that electronic bill pay meant it was done electronically...  So, I had to get my bank to stop payment on a check that I didn't even know existed and put the funds back in my account so I could go to bank #2 and physically write them a check for last month's mortgage payment.  Argh!

So, I was going to wash all this away by having a little "Jen time" in Minneapolis tomorrow.  I'm suppose to start my writing class and then maybe I'll treat myself to lunch or a little shopping.  Guess what?  I just got a call and my writing instructor has the flu.  No class tomorrow, we'll start next week.  Hmmph....

But, the truth is, none of these things happening in my world is really that bad.  Irritating, frustrating, but nothing life shattering here.  I know what that feels like.  I now know what's worth getting worked up about, and what's not.  I didn't always, but I have been changed.  This part of the change is good.  Better to laugh at the little stuff, because it's just little stuff.

Perspective that's hard earned, but much appreciated.  Now if the world would just start making sense...

Sunday September 22, 2013

Uff da... what a week we have had.  We are exhausted this morning, but satisfied with the week that was.  We returned home last night after our second fundraising gala in 5 days.  In between, we had two volleyball matches and Mayo HS homecoming parade and football game.  Team O'Hara has been on the move...

Last night's event was Humor to Fight the Tumor - a fundraiser for the American Brain Tumor Association.  Shannon was a posthumous honoree, and the video they produced about each of the 4 honorees - two who were there celebrating and two who had lost their battles - was very touching.  I'll share the link when it's made available on the HFT website.

Humor to Fight the Tumor
We were able to have both of Shannon's grandmas in attendance along with cousins Laurynn and Jack.  One of the toughest parts of the night was convincing Erin that we couldn't afford silent auction item #5:  a yellow lab puppy!

While last night's event was a success, the biggest event of the week for us took place on Wednesday.  The annual St. Jude Fall Festival of Hope gala in Minneapolis where we were the featured St. Jude family and were a big part of the program.  I spoke to a room of 600 people, and sent each and every one of them home with a copy of Determined to Matter.  We were surrounded by family and friends who have been with us on our journey, and it was a very special night for all of us.

I truly feel so fortunate to have had the opportunity to share our story with these people who support St. Jude.  Often at these events, St. Jude focuses on the successes they have had.  There is an 80% cure rate now for pediatric cancers as opposed to 20% when St. Jude opened 50 years ago.  But, it is important for people to know that the work is not done.  Kids are still dying, and more research is needed.

I do believe this is what I am supposed to be doing.  Sharing our story, sharing Shannon.  People in that room were inspired by Shannon and it showed when it was time to give.  With a little help from my angel, we raised $311,000 for St. Jude in one night.  Amazing.

St. Jude Fall Festival of Hope
I'd be remiss if I didn't mention Miss E here.  She handled herself with such grace and poise at these events.  Having complete strangers know the details of your life and want to engage with you is a lot to handle for anyone, much less a soon to be teenager.   Luckily, she is wise beyond her years, and is coping admirably with a set of circumstances that I wish she didn't have to endure.  That makes me happy and sad at the same time.

On the way home last night, Dan and I downloaded from our week, sharing our thoughts and feelings about all that had transpired.  We did some good this week, and that is our mission.  But, we also acknowledge that sharing Shannon's story makes us miss her so.  We look at images of Shannon and tell tales about her life and her spirit and it brings our loss front and center in our minds again.  Even 20 months after her death, that pain is still so difficult.  I think it always will be.   
So, we are home today, exhausted but satisfied.  Our week of Shannon events is behind us, and we are ready for a little normalcy.  This week, Dan will travel, Erin has two volleyball games, and I will start my writing class.  It's late September, it feels like fall, and time marches on...  

Tuesday September 17, 2013

We have reached one of the busiest weeks of the season for our family:  two volleyball matches, two fundraising galas, hockey registration, and Mayo HS homecoming are all happening this week.  I know, I know - one day at a time...

Today Erin is off to Northfield for a volleyball match.  Grandma and Papa Harkins are arriving from Nevada today as well so they can be present at tomorrow's Fall Festival of Hope.  We've been looking forward to this night since we starting planning back in February, and now it's almost here.  We are excited and nervous at the same time.  I've got my dress, I've got my speech, I guess I'm ready...

While we are in Northfield and Minneapolis the next two nights, our faithful supporters will be at Graham Arena selling Shannon O'Hara Foundation goodies and taking donations during Rochester Youth Hockey registration.  We are grateful for the continued support of our hockey friends.  Another hockey season is upon us, and we wouldn't be able to do all this fundraising without their help.

Speaking of fundraising - I wanted to put out one more reminder that t-shirt orders for the new "I walk for Shannon" shirts are due by this Friday, November 20th.  To see the shirt or to place an order, visit www.shannonoharafoundation.org.

I received a note last night from a friend who also lost a child.  Different circumstances, but the same gut wrenching feelings.  Grief is not a linear process.  Some days are better than others, and some days it hits you like a ton of bricks.  This week might be a ton-of-bricks kind of week for us - lots of Shannon images, stories, and memories will be a part of this week's activities.

But, this is what we have chosen to do.  This is how we honor her wish to have her life matter.  Funding brain tumor research and funding scholarships takes money.  So we fundraise.  And, despite the incredible sadness we feel when we see those images of Shannon, what we are doing does feel right.

I better go practice my speech again...

Friday September 13, 2013

It is a gorgeous day in Rochester and our spirits are high.  Good things are happening around here, and we've got an exciting weekend ahead.

Dan made it home from Michigan last night in time to get to Erin's volleyball game.  The Spartans were taking on crosstown rival JM and it went to a third game before Mayo pulled out the victory.


Sure, winning is nice, but more importantly, Miss Erin has found a sport she loves.  She was thrust into being a setter this year - a position she has never played before - and it's turning out to be a really good fit.  For the first time, Erin is an integral part of her team.  She is a leader out there on the floor, and it's her responsibility to set up the hitters.  When it works and they get a kill (technical volleyball term), the look on Erin's face is priceless.  It usually looks something like this:


For me and Dan, it's not about playing a sport, it's not about winning, it's about the pure joy it brings our daughter.  She deserves that.  She had a whole slew of people there last night to watch her play.  I think she deserves that, too.

From here on out they have games every Tuesday and Thursday along with a couple of Saturday tournaments.  That should make September and October fly by quickly...

This weekend is going to fly by as well.  Tomorrow morning I am off to Minneapolis to do a TV interview on KARE 11's Saturday Morning show with Belinda Jensen.  (I need to wait until Erin gets home from volleyball before I can decide what to wear...)  If you get KARE 11, I'll be on around 8:15am to talk about Determined to Matter and the Shannon O'Hara Foundation.  If you don't get KARE, you can find it posted online after the show.

Then on Sunday, Erin and I are volunteering at the Join the Journey Annual Walk, which supports breast cancer awareness in our community and supports those individuals who are on their own breast cancer journey.  I'll be out there wearing my survivor shirt, with Erin by my side.    

It's crazy to think about the things that are a part of us now that Shannon never knew.  Breast cancer, volleyball... those are a part of the after.  

But, as I sit here to write, the after isn't so bad.  The sun is shining, life is moving along, we are healthy and finding happiness...

Tuesday September 10, 2013

Today is our 19th wedding anniversary.  I'm willing to share this photo because you can't see the giant bow that was on the backside of my dress, nicely accentuating my ass.  If I knew then what I know now... I'd still marry him.  We won't be celebrating tonight, though.  It's a typical Tuesday - he's in Michigan, I'm in Rochester.  But, that's OK.  We're both doing what needs doing, and we've already had a sweet (and sarcastic) text exchange this morning.

I had a Shannon dream last night.  That doesn't happen to me very often, but I was packing up her hockey bag, waiting for her to come home so we could head to her game.  I had Shannon on my mind a lot yesterday.

I've been working on a speech and next week I will speak to 600 people at the St. Jude Fall Festival of Hope up in Minneapolis.  It's the biggest fundraiser for St. Jude in Minnesota and we are fortunate that they are honoring Shannon and donating a copy of Determined to Matter to each attendee.  It's going to be a great night.

While I was writing that speech yesterday, I was also putting together slides - Shannon's smile the day we all wore our "I heart Shannon" shirts,  Shannon's determination when she was on the ice, skating with the Rebels, etc.  These images can still evoke emotions for me even though I've seen them hundreds of times now.  So, it's no wonder Shannon crept into my subconscious last night.  It was nice to have a visit from her...

Yesterday, I did something I haven't done in nine months.  I taught a tennis class!  I did have to dig deep in my dresser drawers to find my uniform...  It was actually very fun to be out there with the kids again and I will continue to do that on Monday afternoons through the fall.

Erin's school year is off to a great start.  She likes her teachers, she has friends in her classes, and she is loving her volleyball team.

The highlight this past weekend was a trip to St. Paul to see the Taylor Swift concert.  Erin's buddy, Lexie, was along, too and the girls had a great time screaming and singing along.  Even this old lady knew some of the words.  Taylor's favorite subject in her songwriting is love - and loss.

My current favorite TSwift song is the one she opened the concert with, State of Grace:

I'm walking fast through the traffic lights
Busy streets and busy lives
And all we know
Is touch and go
We are alone with our changing minds
We fall in love 'til it hurts or bleeds or fades in time

And I never saw you coming
And I'll never be the same

Brains Together For A Cure

We are preparing for this year's Brains Together For A Cure walk, October 5th here in Rochester.  We've been a part of this great event the past two years and last year, 760 people walked to help fund brain tumor research right here at the Mayo Clinic.  Amazing.

We hope Team Shannon can join us in full force because supporting BTFAC is one of the missions of the Shannon O'Hara Foundation.  Determined to Matter will be for sale at the event that day, and we've also designed a new long sleeve lime green t-shirt to wear for this and future events.

So, here's what you need to do:

1.  Mark your calendar for Saturday, October 5th 

2.  Register for the walk here:  brainstogetherforacure.org

3.  Order a new t-shirt!



If you would like a shirt, you must pre-order.   Cost is $20, and the cotton shirts are available in S, M, L, XL, XXL.

To place your order, send an e-mail to info@shannonoharafoundation.org with quantity and sizes.

Orders will be taken until Friday, September 20th.

T-shirt pick up day will be Friday, October 4th.  (More details to come)

**Even if you can't join us for the walk, you can still buy a shirt to support the cause.  The Shannon O'Hara Foundation will be making a donation of $1000 to Brains Together For A Cure.**

So, sign up to walk, order a t-shirt, join Team Shannon! 

First Day of School - 9/3/13

Erin headed off to 8th grade today, starting the same grade that Shannon never got to finish.

I can still picture Shannon heading to school for her first day of 8th grade, wearing her ever present headband that she positioned to hide the radiation burns.  Two years has gone by too fast.

Dan and I are both feeling a little melancholy about it.  Another start to another school year.  Not exactly how it should be, but this is how it is.

But, it's Erin's turn now.  She's her own person, making her own way, and we couldn't be rooting any harder for her...