November 29, 2012

Last night we ventured out from our resort area and attempted to have dinner with the locals.  Talk about out of my comfort zone.  The driving here in Punta Cana is crazy and Dan and I watched from the back of the van as our host John navigated winding roads and people on motorcycles who all appeared to have a death wish.  

There were dogs in the streets and poverty everywhere and very little English being spoken.  The menu was all in Spanish and despite our waiter Miguel's best efforts, some things were lost in translation.  It is an uneasy feeling to be in a place where nothing is familiar.

Last night's adventure could be a metaphor for my life right now - nothing is familiar, and I am uneasy.

I know I am on vacation and I know I should relax and enjoy, but everything just feels a little off.  We don't go very long without thinking about Erin or Shannon and that brings us back.  We have lived in this small cocoon of safe people and places over the past 21 months and it is hard to move outside that bubble and not feel a little lost.  Even in the beauty of the Caribbean, we feel the weight of the shifts our world has taken.  It is hard to do small talk and it is hard to accept that we are changed forever.

But, being somewhere else is also a good reminder that the world is a big, beautiful place.  As Dan and I walked the beach together this morning, we agreed we want to see more of it.  And we do enjoy doing it together.  And with Erin, too.  Yes, we are changed, but we must go on and live and experience what we can while we are here.  Isn't that one of Shannon's lessons?  Make the most of the time you have?

Learning to accept what has happened, learning to dream about what we want, figuring out how to be our best selves going forward.   Grief and forward progress take work.  No way around that.

Dan and I are headed back to the beach with our books this afternoon to sit and read while the waves lap in against the shore.  Very nice.  Or should I say "muy bonito".  Coming home tomorrow...

Punta Cana, Dominican Republic

It is strange to be in this strange land.  Leaving the United States is a new experience for me and Dan.  Thankfully, most people speak some English, much better than the few Spanish words I know.  Back when Shannon and Erin were little, Dora the Explorer taught me a bit of espanol, but I haven't been able to work the words abuela or vaminos into any conversations yet.

We are here as the guests of one of Dan's customers and his wife, along with two other couples.  There are those awkward "get to know you" questions that are such a minefield for us.  And then, of course, the new acquaintance small talk that is necessary.  That left me feeling a little heart sick last night.  I feel I am almost incapable of small talk anymore.  I don't care about the latest celebrity gossip or the hottest new TV shows.  And yet, life goes on and people go on vacation and this is all normal.

Today is a better day because I am doing a better job of taking care of myself and getting what I need.  Dan and I played golf this morning with the other three guys.  Yes, me and the four men played 18 holes together while the other women went to the spa.  In case you hadn't noticed, I am not your typical chick!  I was out there with the boys, laughing, swearing, and smoking cigars.  (I skipped the cigars.)

Our golf games were average, but the course was stunning.  Several holes played right along the Caribbean Sea.  I don't get to do that every day, so I'm grateful for a new experience.

Erin is staying in touch with us easily via wi-fi and e-mail and she admitted to me last night that she misses me.  Absence makes the heart grow fonder and while she's used to Dan traveling every week, I haven't been "absent" from Erin in a very long time.  She and Grandma have everything under control at home and even though she misses me, she's busy and doing just fine.

Now I am sitting at the beach and listening to the waves and I am trying to think not only about the past, but about the future.  I was a bit apprehensive about this trip - meeting up with strangers in a strange place is way out of my comfort zone.  But, a dear friend told me I should go and take advantage of the opportunity to be a little selfish and try and relax.  She also reminded me to dream.  I've certainly spent a hell of a lot of time reminiscing about what has been, but I should also allow myself to dream about what may be.  So, here I am, sitting on the beach, looking at the Caribbean, and trying to dream...

Sunday November 25, 2012

On a lighter note, Jen and I are boarding a flight for Miami this afternoon.  Monday we will take another flight to the Dominican Republic for 5 days on the Caribbean Sea.

Ms. Erin's busy schedule will be managed by Grandma Harkins who is staying in Rochester for the week.  We are tremendously grateful for all the opportunities we have.  Life is good.

A nightmare

Precisely 50 weeks ago desperation lead our family journey to Memphis TN where we would participate in a clinical trial we were hopeful would buy Shannon O'Hara more time here on Earth.

It was a frightening leap of faith but with Shannon reporting new symptoms daily we had to try to keep the fight against brain cancer going for another round or two.  To use another sports cliche - it was 4th down and long.

We checked in at St Jude's Children's Research Hospital after a clumsy travel day and were assigned temporary housing on campus at Grizzlies House - modeled on the blueprint of a Hampton Inn.

As we checked in, we were tired, scared and each wondering separately "what are we doing?" - but afraid to say anything so as not to undermine the confidence of the group.  We unpacked and tried to make ourselves at home in room 208.  The difference between this "hotel" and a Hampton Inn is that Grizzlies House is purposely sterile with hardwood floors and high-test ventilation to clear the air of contaminants.  Sick kids fighting horrible diseases stay in these rooms every night.

Shannon was a first-born and like many new parents Jen and I often caved when - as a toddler-  she sold us on some lame excuse to crawl into our bed.  That usually lead to me and Shannon sleeping in the big bed and Mom relegated to the couch.  Shannon loved to press up against the parent she slept with - a human security blanket.  Jen likes her space when she is crashing so Shannon and I became snuggle buddies.

In Memphis, we were all scared shitless so it was decided that Jen and Erin would sleep in one of the doubles and Shannon and I would sleep in the other.  It was only then that I learned how scared Shannon really was.  Fear was an emotion she rarely let any of us see.  She would cry sad tears about her cancer diagnosis from time to time, but rarely did she admit she was scared.

Etched in my memory bank forever are Shannon's muffled screams that would startle her out of her slumber.  She would thrash around with her heart racing and breathing accelerated and ,still sleeping, reach a leg over to make sure someone was with her.  She would drift back to sleep only to be awakened by the next horror.  I never asked her about those dreams.

They continued in the Memphis apartment we moved into after a few days in Grizzlies.  I can still feel her leg pressing against me for comfort.

What I would give to feel that little girl next to me tonight...  


Today is a day about family and gratitude...we have plenty of both.

On these holidays, it is impossible not to think about our loss and how much we miss Shannon.  But, when I can get my mind to see the good in the world around us, then I feel grateful for what we have gained.

I am thankful for all that Shannon taught us in her short life and through her battle.  Our world changed because of her, and I have gratitude for the new awareness I have of the world around me.

I am thankful for family and friends who support us in so many ways, big and small.  No one does it alone in this life.  We need people to share in our joy and our sadness.  Thankfully, we've got people.

I am thankful for the stability and security we have - a home we love and jobs we like.  Erin, Dan, and I have much to be grateful for right here in front of us every day.

I am thankful for a deeper understanding of who I am, who we are, and of the things that really matter in my life.  I know now how much they really mean to me, and I no longer take any of that for granted.

So, as we carry on this holiday weekend, some things will be the same - family, food, football - and some things will be very different.  I will certainly have my moments spent remembering what we've lost.  But, I hope I can spend more moments looking around and seeing what's still here, and feeling grateful for that.

Happy Thanksgiving, everyone.

Saturday November 17, 2012

Of the 45 weeks in my new life, this one has been among the hardest for me.  No reason in particular, no one event that set me off.  Just a sadness that I can't shake.  An ache.  This week, I can feel my broken heart...

Maybe it's that we've reached the point in the calendar where, a year ago, things started to go south for us.  Recollections of Shannon beginning to feel symptoms that we hoped might be medication related, but really were the beginning signs of tumor growth.  Recollections of Thanksgiving conversations last year about possible trips away to try experimental treatment, and our first mentions of Memphis and St. Jude.

Maybe it's the impending holidays which are weighing heavy on my mind.  I always feel a bit melancholy and introspective come holiday time, recollecting another year that has passed and wondering if I lived up to my potential in the last 12 months.  This year's holidays will be difficult, for sure.  Last year was hard, but at least we could still hold Shannon's hand.

Maybe it's that I am feeling restless and unsure about what the next stage of my life is going to bring my way:  there's the book, of course, and there's the foundation, but I still feel a need to figure out what's next for me...

Maybe it's all of these things.

But a pick me up came from a strange place today.  It came from a hockey rink.

Shannon's buddies, now playing on a team together as The Cannons, had a home scrimmage today.  I had such mixed emotions about going - a part of me was worried that it would be too hard to watch, and that I would be left wishing that things were different.  Wishing that life was fair, and that my little left winger was still out there.

But we decided to go, to see those girls and see our friends, and even Erin wanted to make a trip to the rink.  There were hugs and hellos aplenty for us from all the parents, and as the Cannons spotted us and heard us cheering, we are pretty sure we saw some smiles out there on the rink.  They see us, and they think of Shannon.  Maybe, in some small way, it makes it feel like a little piece of her is there with them.

It was good to see my hockey mom buddies and pretty soon I was cheering and laughing and we were poking fun at our kids and our husbands just like the good ol' days.  Those ladies each have their own favorite Shannon story and they feel completely comfortable reminiscing about her with us.  I love that. In the end, an hour at the rink with our friends turned out to be a pick me up.  I didn't see that coming, but I'll take it.

Erin has been really present with us this weekend, and that's been really nice.  She's been cranking out a bunch of homework, helping me and Dan with little projects around the house, and kicking both our butts at Mario Kart.  

Tomorrow it's Erin's turn to get her season started.  Her 7th grade Spartan basketball team kicks off the year with a one day tournament in Lakeville.  Then, it's a quick two day school week before the holiday season commences.

Thanksgiving week.  I guess I'm as ready as I'm going to be...

"Have courage for the great sorrows in life and patience for the small ones; and when you have laboriously accomplished your daily tasks, go to sleep in peace.  God is awake." - Victor Hugo

Wednesday November 14, 2012

I am up in the middle of the night blogging from a Hampton Inn in Wyoming, MI and it's the Boss' fault.

Monday night in St. Paul, Bruce Springsteen played way too late - almost 11:30 before we danced to his final encore American Land.

I was on a plane for Michigan Tuesday - wheels up at 6:00am.  So Tuesday night, I went to bed too early and woke in the middle of the night with Springsteen songs still ringing in my ears.  It was so worth it.

I first saw Bruce live in 1979, not long after he had released Born to Run.  I was 15.  My copy of the Darkness on the Edge of Town record literally wore out with a critical scratch on the song Something in the Night. 

Bruce played Something in the Night Monday night.  Brought me to tears.  So did his quiet reflection as he brought the sound down and introduced the E Street Band during My City of Ruins.  The Boss slowed the song and silenced a building of 18,000 to acknowledge the ghosts from each of our lives; those we have lost. He encouraged us to reflect.  Jen and I held each other tight. It felt good.

Ironic that this was happening in Exel Energy Center where Shannon, Erin and Jen and I spent one of the most memorable days of "the journey" a year ago.  Impossible.  I have a picture to prove it otherwise I might not believe it.

October 2011, Wild Day with Shannon and Erin at the X

The X is built in the footprint of the old St. Paul Civic Center where I danced in the dark with Bruce and the E Streeters many times.  Sort of hallowed ground for me and my development as a human being (and a rocker).  So to have some time for quiet reflection in the middle of a rock concert Monday was meaningful.  It was as if Bruce knew we needed to acknowledge the fertile ground we have covered over these last 20 months.

Of course, Bruce could have been reflecting on the death of his beloved Big Man - the long time Sax man for the E Streeters, Clarence Clemons.  Or for the recent losses in his native Jersey Shore.  Or for 9/11 victims which is why My City of Ruins was released.  So many of the the Boss' songs are like that - lots of room for reflection, interpretation, application to ones own situation.  Songs with meaning in the micro and macro.

Now there's tears on the pillow
Darling where we slept
And you took my heart when you left
Without your sweet kiss
My soul is lost, my friend
Now tell me how do I begin again?

My city's in ruins
My city's in ruins

Thanks for another exhausting show, Boss.  And for the gratitude I am feeling this morning in this Land of Hope and Dreams.

Monday November 12, 2012

The first snow flurries of the year are falling today.  I'm not a big fan of winter, but there is always some excitement the first time the white stuff appears.  It catches me off guard every year.  I guess I'm a slow learner.

We had a really nice weekend around here.  A good mix of social time and down time.  We saw some friends, watched some movies, and just caught our breath a bit.  Erin told us she felt like she got what she needed, and we had some good talks and some laughs together as a family.

I've been writing a lot here lately about my parenting struggles, and I've received so much support and reassurance.  Motherhood is like a cult.  In a good way.  No matter what your political leanings or parenting style, if you are a mother, you are bonded to others who have chosen the same path.

It is one of the cruel ironies of the world that we spend so much time and energy trying to make sure we raise our children to become independent and self sufficient and then when they do it, we feel such a sense of loss because they don't need us in the ways we are use to being needed.  But, there is much comfort in having another mother look you in the eye and say, "I've been there, and you are going to be o.k."  My fellow cult members have been reassuring me that I'll get through this stage, and Erin will probably even want to be my friend someday.

There's no denying our situation is a little different because of what we have been through as a family.  That just adds pressure to our interpersonal dynamics.  And it's not an excuse, but an explanation for why this stage has hit me so hard.  Just two years ago, it seemed like I knew my role, and that it was going to last forever:  I had two girls who needed me to help them as the grew up.  I was ready for the task at hand.  Now, all of a sudden one of them is gone and the other has a desire for more independence much sooner than I anticipated that would happen.  So, I've been reeling a bit.

But, every good day is a good day and we had a string of them this weekend, so I should focus on that.  Today is another good day.  Erin is off to school to start the 2nd quarter, and Dan and I are off to see Bruce Springsteen in concert tonight.  Me, DanO & The Boss... sounds good to me.

Thursday November 8, 2012

After several gray, cloudy days, the sun finally shined today.  Literally and figuratively... The first quarter of the school year has ended and Miss E has a three day weekend ahead with no agenda.  She is quite happy about this!  I have a feeling she will stay up late and sleep in late and I vow not to suggest that she do otherwise...

I spent a great portion of my day working on paperwork and communication for the foundation.  Working on our goals, finances, mission statement, board of directors, etc.  Writing a descriptive narrative of past, present, and future activities to explain to the Internal Revenue Service what we are all about.  Uff da...

Dan and I also had meetings today to do some planning for The Shannon Cup girl's hockey tournaments that will take place in January and February.  We are hoping to have all sorts of goodies for sale:  t-shirts and hats and pins, oh my!  

Hard to explain, but doing all these things feels so good and so terrible at the same time.  I find that I can get going and feel really productive but then, when I stop and think about what I am doing and why I am doing it, well, it's easy to get sad.  But, as we've said before, what are the options?  Bury my head in the sand and grieve?  Avoid the subject?  I just can't.  That wouldn't honor Shannon.  So, onward we push with our planning and organizing and our hopes to make a small difference, some how, some way...

In that context, I am pleased to share with you all some information on the book. It's titled Determined To Matter and you can now check it out on my publisher's website.  This is pretty exciting stuff for me and I'm excited for you all to see it, too.

Check it out at:

You will see Determined To Matter featured on the website's home page, but you can find a more extensive write up on it by scrolling down to the bottom right of the home page and, under menu, check out the catalog for Spring 2013.

While you are already able to pre-order through Amazon and Barnes and Noble, if you can wait a little longer, there will be a chance to order from local booksellers in the near future.  I'd love to see you all support the local business owners, so please have some patience.

I am meeting with my publishers again in December and then we will put our marketing plan into action.  I sometimes can't believe this is really happening.  But, seeing the book featured on their website certainly makes it feel very real.

Yet another thing that feels so good and yet, each time I look at that beautiful photo of Shannon on the cover, it brings a little bit of heartache.  That's just how life is for us, for now...

"My grief and pain are mine.  I have earned them.  The are a part of me.  Only in feeling them do I open myself to the lessons they can teach." - Anne Wilson Schaef

November 6th

One note of business:  today I sent out the first Shannon O'Hara Foundation Newsletter via email.  We will do this periodically to keep our supporters informed.  If you'd like to receive 
these updates and haven't signed up, please do so on our foundation website at:

Today is election day and once I get Erin off to school, I will go cast my ballot here on this Tuesday after the first Monday in November.  After so much negative rhetoric, no matter what the outcome, I hope for reconciliation and collaboration amongst us.  Life is short and we shouldn't waste it arguing.  There is no time for hate.

November 6th also brings us to the ten month mark since Shannon passed.  Unbelievable, really.  More space between us, but still fresh in our minds and hearts.  Time does seem to be moving so quickly and this past week since I last posted was yet another rollercoaster ride.

This past weekend there were happy times including a cousin sleepover.  Jack and Laurynn came to Rochester to spend the night and we heard lots of giggles and goofiness.  Dan and I were happy to hear Erin just being a kid for a little while at least.

The rollercoaster also hit some lows, though, and those usually bring tears.  Tears from Dan who was just missing Shannon.  Tears from Erin who was feeling the pressure of being an only child and having "too much" attention focused on her.  Tears from me because I sometimes feel inadequate in helping Erin - and Dan -  navigate this more easily.  And tears from me because, of course, I miss Shannon, too.

Erin is 11 going on 16 or 22 and she wants independence.  She doesn't want me to "baby" her, and she wants to do things on her own with little or no parental supervision.  I see her as "only" 11 and feel it is still my duty to mother her.  This is not a dynamic that is unique to us.  Ask any mother who has watched their daughter go from girl to young woman and they will tell you there were plenty of struggles and tears for everyone involved.

But, my protective motherly instinct is in hyper-aware mode because Erin lost a sister, a role model, and now she's determined to figure it out on her own, and she's feeling pressure to do it perfectly.  I worry that Erin feels like Shannon never made any mistakes, and that's an impossible standard to live up to.  Truth is, Shannon didn't get the chance to navigate these choppy waters.  She certainly would have made mistakes, just like every adolescent does as they mature, grow, and assert their independence.  I am just sad for Erin that this has happened so fast for her.  The world made her grow up in a hurry.

So, Erin wants less meddling from me, and I want Erin to take my advice more often.  Anybody got any bright ideas??!!  Seriously, though, we do our best around here to keep communicating and being honest with each other, and sometimes that doesn't get us to common ground, but at least we know where we stand.

Dan and I continually remind ourselves to be kind - be kind to each other and be kind to ourselves.  It's ok to struggle, it's ok to not have all the answers, it's ok to grieve and feel, and it's ok to try again.

" Grace strikes us when we are in great pain and restlessness...Sometimes at that moment a wave of light breaks into our darkness, and it is as though a voice were saying, "You are accepted'." 
- Paul Tillich