The Big C

Well, no reason to beat around the bush - the call from my surgeon today confirmed that I have DCIS, ductal carcinoma in situ, which means cancerous cells were present inside the milk duct.  In situ means "in it's place" which explains that the cancer is contained and not invasive.  This is good.  This is the earliest form of breast cancer, and the most treatable.  If you're going to get breast cancer, this is the one to get!

I joke, but of course, we are all a bit rattled.

The standard course of treatment for this type of cancer is a lumpectomy, which I've already had, plus radiation therapy.  There are some choices to be made, and things to discuss with the doctors, which will happen later this week or early next week.  If radiation is done, it won't start for a few weeks to give the surgical site a chance to heal.

So, that's what we know at this point.

OK, can 2012 end already?  PLEASE?!?!

Happy New Year, everyone.

The waiting game...

Dan and I are up and enjoying a really good cup of coffee on this clear and cold Sunday morning.  My recovery is going smoothly. It's now two days post-op, and I feel better today than I did yesterday, so we're heading in the right direction.  I may even try to wean off the narcotic pain meds today and see if extra strength Tylenol can do the trick.  (Yes, I have an ulterior motive - no alcohol while on narcotics, and I just might need a glass of Chardonnay tonight :)

So, we play the waiting game today and tomorrow until the phone rings.  Dr. Boughey will call as soon as she receives the final pathology report.  We did speak with Dr. Boughey while I was in the recovery room just after surgery, so we gathered a little bit more information on Friday.

Unfortunately, the best case scenario has been ruled out.  The hope was that no more atypical cells would be present in the lumpectomy area, and that would be the extent of the treatment needed.  That's not the case.

They do some preliminary pathology right there in the operating room, and Dr. Boughey explained that those results showed more atypia was present in the area.  Now pathology is doing their extended testing on the tissue, and those are the results that we receive tomorrow.  In simple terms, tomorrow we will hear that this is "almost cancer" but hasn't quite reached that stage, or we will hear that this is DCIS, early stage breast cancer.  Either way, there will be some treatment necessary, but there are still a lot of unknowns for us at this point.  So we wait.

We will try to occupy our minds today by watching the last regular season NFL games.  If the Vikings can beat the Packers, they get into the playoffs.  That makes me think of Shannon and how amped up she'd be for today's game.  She loved watching the Vikes, and she loved hating the Packers!

A year ago today, a hospital bed was delivered to our home.  Shannon was hanging on longer than we anticipated, and it became difficult to keep her comfortable on our regular furniture.  So, we had to do something we didn't want to do, and put her in a hospital bed.  As much as she never wanted to be in a hospital bed, it was absolutely the right decision and it allowed us to keep her comfortable during the final week of her life.

Despite everything else going on for us right now, we are still reminiscing about where we were at a year ago.  There are so many little moments in time from those last days of Shannon's life that will stay with us forever.  Late nights spent holding her hand and talking to her so she knew we were there, and so she knew it was ok to let go.

The best part of today will come this evening - my friend Teri is driving 9 hours from her home in Michigan to spend a couple of days with me.  I haven't seen her since January 10th.  We said goodbye the night of Shannon's funeral, and we just haven't managed to see each other since then.  Her arrival will be a real day brightener.  Girlfriends make the world a better place...

Jen is recovering

Jen is home and resting.  Her lumpectomy went well.  The surgeon - Dr. Judy Boughey - achieved clean margins.

However, pathology is inconclusive so we will wait the weekend to hear.  Dr. Boughey said her pathology team was hedging.  Too close to call for how to classify the affected tissues that were removed Friday morning at Methodist Hospital WFMC.

Care levels continue to be excellent.  Her surgery started at 10:15... she was in recovery at 12:45...released a few minutes after 2:00.  And now home watching Ellen in bed with pain meds to help her doze.

Erin gave her mom the eyeball test - deemed her healthy enough and headed out the door for another sleepover.  That kid can cope.

Thursday December 27, 2012

We've written here before about feeling some obligation with this blog.  We know people care, and those of you who have been along on our journey have brought us so much love and support.  It is truly amazing.

But, sometimes something happens in our lives, and we don't know how to share it with you all.  This latest one is almost too much to take.

Quickly let me backtrack - we had a wonderful Christmas Day surrounded by our family.  Just as we had hoped, it was filled with laughter and tears and stories about Shannon. Unfortunately, Dan, Erin, and I were dealing with some anxiety brought on by events earlier in the week.

On Friday, December 21st, I had my yearly, routine mammogram.  I've done it every year since turning 40, and it's always been completely normal.

Not this time.

I was told to call back and make an appointment for further imaging.  With the help of friends who have friends who work in breast imaging, I was expedited and got in first thing on Monday morning.  Christmas Eve.  The hope was that further diagnostic mammogram would show the calcification spots that had showed up on the initial mammogram would be benign and I would be sent on my way, see you next year.

But no.

The diagnostic imaging was indeterminate which meant the next step was a needle biopsy to remove these spots and see if we could determine them to be benign.  So, on Christmas Eve, I had a needle biopsy with the hopes that the results we would receive on Wednesday (12/26) would prove to be benign.

No such luck.

Pathology's findings are that these spots are "severe atypical ductal hyperplasia", which is considered a precancerous condition.  But, such a small sample is taken during a needle biopsy, that they can't completely rule out the possibility that this hasn't crossed over into the early stages of cancer, called DCIS (Ductal Carcinoma In Situ).  In order to determine this, surgery will be performed to remove this area where these calcifications were, and check those surrounding tissues to see what is happening with the cells.  

Now, understand, these calcification "spots" are an absolutely tiny, tiny grouping.  The radiologist who read my initial scan was on top of his or her game that day.  There has been much discussion recently about whether women in their 40's need yearly mammograms.  Here's an example when it worked to my advantage.  Whatever this ends up being, it was caught at a very early stage.

So tomorrow morning I will have a lumpectomy done as outpatient surgery.  We will get preliminary findings tomorrow, but will not receive final pathology until Monday.  Another weekend of waiting for results.  Ugh...

The results will show us one of three things:  Best case scenario is that the surgery shows no residual atypia and the only ongoing treatment may be the need to take Tamoxifen (a cancer prevention method used in women who are at risk) and be hyper-vigilant about screening and exams.

The second scenario is that there are residual aytipcal cells in the area and the surgeon will try to get to clean margins.  Ongoing treatment in this case would be determined by me and my doctor.

The third scenario - I'm not going to call it worse case, because there are worse things - is that pathology shows that this has crossed over into DCIS.  The surgeon will work towards clean margins, but if they are unattainable with a lumpectomy, further surgery may be required.  A diagnosis of DCIS would be an instance where radiation therapy could be used as well.

So that's the physical side, the nuts and bolts of it.  As for the emotional side... how much time do you have?

Erin's first reaction was a quivering lip and a look of disbelief as a tear rolled down her face.  Her second reaction was "Mom, you can't die because Dad and I would be screwed without you."  Dan concurred, and we laughed.  I'm taking it as the highest of compliments.

Dan is handling it pretty damn well.  He knows he can't melt down right now, because I need him.  We joked today as we sat in yet another exam room at the World Famous Mayo Clinic - how many times have we done this? Enough already.

As for me, good God, 2012 cannot end soon enough.  Just to recount in case you've forgotten:  an ovary removed in April, a tooth extracted in June, and oral surgery to remove two more teeth in July. That didn't do the trick, so I ended up in the hospital for 5 days with osteomyelitis, had another oral surgery, and then spent the month of August with a PICC line in my arm to administer antibiotics.  In November, I spent time weekly at the clinic as I worked with a therapist to deal with the upcoming anniversaries and holidays that we would be facing.  And now, a routine mammogram leads me to my fourth surgical procedure this year.  I hadn't had general anesthesia since I had my tonsils out while in college 22 years ago, and now four times in one year?  The same year my daughter died?  How is that possible?

I have a lot of choice words I'd like to write, but children may be reading this...

Now, in the grand scheme of things, even the worse case scenario here is not really life threatening.  DCIS has a 99% survival rate.  I really, truly feel I'm going to be ok.  But, for me, it's just one more thing in a year of things.

So, we are all exhausted and hoping we don't have another fight ahead.  But if we do, we know this:  we'll have lots of support, we'll do it together, and we'll manage to laugh about it along the way.

Merry Christmas 2012

The rituals of Christmas are upon us and we're doing pretty darn good.  Ms. Erin is helping us stay grateful, stay in the present.  Just like any other year she was keyed up to open gifts on Christmas Eve.  Equally enthused to make sure Jen and I opened gifts from her.
Smiley; new phone case and jammies
Jen, Erin and I tried out a new tradition for Christmas Eve and crashed in on some friends as they celebrated.  Just visiting, enjoying some laughs and drinks.  Nothing heavy.  Just nice.  Not so much about what we have been but what we are today.  That felt right.

We returned to our house around 6 to fire up the fondue pot and the three of us enjoyed steak, potatoes, mini-wieners and crab legs. Erin was happy.  

On Christmas Day we will open our home to family (and anyone else brave enough to stop by).  We will likely take time to reflect more on our celebration with Ms. Shannon a year ago.  There will be tears, but there will be even more laughter.  Laughter and love.  Sounds like Christmas!

Saturday December 22, 2012

This week zipped by, and somehow, I didn't manage to find the time to blog.  Time for a "state of the family" update...

We have reached the winter break and with the help of a winter storm this past week, it's going to be a white Christmas.  That winter storm provided Erin with a day off as schools were closed on Thursday, and she was perfectly content to stay home and do nothing all day!

In all seriousness, Erin has soldiered on and is managing to keep her grades up and do what needs doing at school.  She tells us she struggles some days to concentrate and focus - Dan and I know exactly what she means - but she's doing it.  Now, she has 11 days off to sleep in, hang out with friends and family, and recharge her batteries.

Dan had a productive week traveling in North Dakota.  The winter storm missed him up there, so he made it home safely and he, too, is looking for some time at home to recharge his battery.  After the first of the year, things will be very busy for him with new customers coming on board.  Much like Erin, he manages to focus well enough to get the job done.  We are all grateful for that.

As for me, I met with my publishing group again this week.  I'm still amazed at how much goes in to publishing a book.  Things will ramp up starting in February as we work to get some publicity and press in advance of the publication.  We're hoping for exposure in local, Twin Cities, and - cross your fingers - national newspaper and television outlets.  Scarletta Press even tweeted about Determined to Matter yesterday with the hashtag "#mustread".  For those of you on twitter, check it out @ScarlettaPress and please give it a re-tweet.

We continue with our calendar game and there's no escaping this date:  December 22nd last year is the day we packed up our minivan, checked out of St. Jude, and headed on the 12 hour drive home from Memphis.  (There's an untold story from that drive home, but you'll have to wait and read about it in the book.)  We all wanted to be home for the holidays last year, and we made it.  We arrived home to a house decorated for Christmas, complete with a light up sign on the deck that read "I heart Shannon".   Those memories remain so vivid for us.

Shannon's friends are remembering, too, and have been sharing those memories with us.  We received a beautiful Christmas ornament - a hockey skate with wings and Shannon's name written on it in lime green - from one friend, and a touching, hand written letter from another.  Suffice it to say, we're not the only ones recalling last year's holidays and the last of Shannon's days here on earth.

But now it's December 22, 2012 and we are gearing up to see our family on Christmas Day, 2012.  We are hosting - both our families - and everyone who is within driving distance is coming, along with Grandma and Grandpa Harkins flying in from Nevada.  Now, this may sound like a crazy idea to take on the job of hosting 40 people, but we want to be home, and our families want to be together.  It will be a casual, open house style day, and we will laugh and cry and reminisce.

It will definitely be a full circle moment for all of us, but it feels right.

Sunday December 16, 2012

Our rollercoaster ride provided us with a few peaks this weekend.  We are all over the map with our emotions and feelings, but we figure if you all are going to listen to us bitch on our bad days, we should share with you the good.  

Saturday we spent the entire day baking and decorating Christmas cookies.  This is a tradition, and it's something I've always looked forward to each year with my girls.  

It was still fun do with my girl, singular.  

Erin loves baking, and we played Christmas music and made a mess of the kitchen.  We've got a lot to show for our efforts:  dozens of frosted sugar cookies, peanut butter blossom cookies, chocolate dipped pretzels and chocolate covered peanut butter balls. This is dangerous - our will power will be tested around here!   

Of course throughout our baking day, my mind wandered to last year's feeble attempt to keep up this tradition:  Erin and I baked cookies in Memphis with Grandma, while Shannon was vomiting in the other room.

But my mind also wandered to happier memories when the girls were younger and they wanted to "help" with the Christmas baking.  Their "help" sometimes resulted in inaccurate measurements or eggshells ending up in the mix, and you could count on frosting and sprinkles ending up everywhere.  All part of the fun, and such good memories.

Today we went to church, caught up on homework and laundry, and then attended Erin's winter piano recital.  Erin does love learning to play music, and she's got a good vibe with her teacher, Glenna.  

Erin played a rousing rendition Rudolph the Red Nose Reindeer.  She looked poised and mature up there, and we told her we are proud of her.  Erin rolled her eyes and teased us that we'd be proud of her even if she sucked.  We scolded her that she shouldn't talk like that, but she rolled her eyes again and said that's how 7th graders talk.  (By the way, she didn't suck...)  

We got to spend a lot of time with Erin this weekend, and it was nice.  I think that's what she wanted, too, and Dan and I are up for that.

So there was something good in each day.  In all our sadness, it's helpful to recognize those moments that feel good.  A little peace amidst the chaos.

A busy week ahead for all of us.  One day at a time...

Saturday December 15, 2012

Going to take a crack at getting some thoughts out.  I am struggling this week to make sense of it all.

This was a tough week even before the news broke of the shootings in Newtown CT.  Now I am really having a tough time shaking the images in my mind of the terror, the shock, the mass grieving that is taking place today.  I can't watch the news.  I am not stable enough at this time to try to absorb the horror or to piece together a political opinion.  Wait, I've got a couple; if you sell weapons (legally or illegally), how can you not look in the eye of your customer and ask "what do you have in mind here fella?"  And if the Second Amendment of our Constitution was written when there were assault rifles and automatic weapons would it include the same protections?  Of course, most of us want to fit the blame into a tidy little box and move on.  It's really complicated.

Prayers that we have reached a tipping point.  Prayers for these 28 families who are going to be struggling to ever feel Christmas joy again.  Prayers that the anger can be diagnosed sooner.

One-at-a-time, Jen, Erin and I have each taken the time to assess our mental condition and the results have been the same; we are fragile, we are survivors of a nightmare and we need help.  Acceptance of this condition is hard.  I have to remind myself asking for help is not a sign of weakness.

I traveled through some airports this week and had time to listen to my music with my headphones on with the busy world bustling by all around me (think O'Hare H terminal).  The combination of music and memories of Shannon and the people in our lives opened a faucet of tears. People looking into my eyes had to be wondering "what's his problem?".  I made no attempt to hide my tears.  I didn't care.

Also this week, I watched the Sandy Relief concert from New York with performances from Bruce, Pink Floyd (Roger Waters), The Who, The Stones, Billy Joel... those were my peeps.  Each performed songs attached to so many memories of a carefree youth.  And at the same time they were playing to raise money for people who have lost everything.  I know I tend to quickly move on from tragedy but there is still major suffering on the Jersey coast, parts of NY.

For this family, our daily reflections include a one-year-ago-today look back.  A year ago today, Shannon was being pushed around the St. Jude Children's Research Hospital campus in a wheelchair for blood draws.   Still an active participant in a clinical trial.  Still hopeful.  Still alive.

I'm not sure how I can tie it all together.  I can't.  It's messy.  But we all know someone that has suffered tremendous loss in their lives.  Just remember, they are still living with that loss everyday.  You may have moved on but they never will.

OK, that's pretty heavy-duty.  Just an awareness I live with today.  I think I am grateful for that awareness.

Tuesday December 11, 2012

Erin and I attended the Mayo-JM girls basketball game tonight at the John Marshall gymnasium.  Some of the best times of my high school years were spent in that gym.  Can it be 25 years ago?  Back then, the JM-Mayo game was the biggest of the year. (Yes, to us it was JM-Mayo, but now I find myself calling it Mayo-JM!)  Anyway, it reminded me of a simpler time and good memories for me.

After the last couple of days, I wasn't sure we'd be going out tonight, but Erin was up for trying to socialize a bit, and she sat with her teammates and they dreamed about the future, imagining themselves out there playing one day.  Those dreams have been hard to come by lately.

The three of us are finding these days difficult, and it's taking some extra work to persevere.  Erin couldn't make it to basketball practice last night.  Just. Couldn't.  And we told her "it's ok".  She told me through her tears, "I can't be Smiley tonight."  I told her she never has to fake that for someone else's benefit, but that's her instinct.  Make others comfortable.  That's what we do.  But sometimes, we're just not up for it.  Erin is missing her sister in the worst way lately.  The first snowfall triggered so many memories of happier times spent playing together, sledding in the back yard and building snow forts.

So we are all feeling it intensely right now, and we are all needing help to get through it - from each other, from our family and friends, and from professionals.  Erin and I were joking that it's too bad Mayo Clinic Psychiatry doesn't have a buy one get one free deal.  Or a family punch card where the 10th appointment is free.  Now, this may strike some of you as sick humor, but we've got to keep laughing, even if it's at our own expense!

We are doing what we can each day, trying to look ahead and dream, and at the same time, just trying to survive these days.  These dates on the calendar remind us of where we were a year ago: Shannon in decline, and our family in crisis.

The holidays are always a reminder of the year that has passed, and this year has had so much pain in it for all of us.  And I don't mean just the three of us.  I mean all of you who have shared in this journey.  We know that Shannon not being here has left a void in many lives.

We've been debating about Christmas cards.  Should we send one?  What would it say?  What picture would we use?  How will we ever take a picture again that accurately represents our family?  Still undecided on that one.  You might get a New Year's card from us this year.  Or maybe I'll be ready by St. Patrick's Day.  Who knows...

And yet, as we get to the end of this year and we're trying to take stock of things, we can see the love we've gained, the awareness we've gained, and we know we are better people for what we've been through.  We're better people for having had Shannon in our lives, and the desire to honor her memory is the reason I know we will right our ship and carry on.  There is really no other option.

"When everything is dark, when we are surrounded by despairing voices, when we do not see any exits, then we can find salvation in a remembered love, a love which is not simply a recollection of a bygone past but a living force which sustains us in the present.  Through memory, love transcends the limits of time and offers hope at any moment in our lives." - Henri Nouwen

Sunday December 9, 2012

A cozy good morning from our winter wonderland.  The season's first snowfall is underway; brown grass has been replaced by fresh white everywhere.  Not a major event in Rochester MN - maybe a couple, three inches by days end - but north and west of here its on-like-Donkey-Kong.  Almost 50 years of living in Minnesota and I still get a thrill out of the season's first snowfall.

Erin and sleepover pal Lexie are up early out playing in the snow.  Inside, warm and smelling of fresh coffee (loving this Trader Joe's New Mexico Pinon), Christmas tree and home.  Feeling grateful.

Feeling grateful maybe because Jen and I saw Flight last night.  Denzel's character Whip Whitaker portrays addiction so completely it made me angry, frustrated, "why can't he just stop?"   The writer of Flight's screenplay had a clear understanding of the disease.  Maybe that's why my sense of gratitude is heightened this morning.  A powerful film, no doubt.

Jen's roller-coaster week took another dip Saturday.  She was supposed to be on a girls weekend in Michigan.  But Jen's pal Teri called just a few hours before departure, so sick she was barely able to scratch out the words "I'm sick".  File that cancellation under the "out-of-our-control"column.

Things out-of-our control.  God's will.  Acceptance.  Got it.  No confusion here.  Now stop.

Instead of flying to Michigan, Jen hung with me and Erin at the Mayo 9th grade boys basketball game.  These are Shannon's class of 2016 mates and they are honoring her with her #9 on the back of their team warm ups.

Maybe, that's why I'm grateful today.  You people won't let us forget.

Wednesday December 5, 2012

A year ago today, we headed to Memphis, TN.  That's one of those days that's like a photograph in my mind.  Shannon was wearing her airbrushed hockey hat with her name on it, and a nervous smile.  We arrived in an unfamiliar place, and we were scared. We felt we had to go, and I can admit now, it was the first time in our journey where I felt desperate.

While our time in Memphis was filled with so many sad days, I am grateful that we got exposure to St. Jude Children's Research Hospital.  I contend that anyone who is treated there, even if it's only for 17 days, is changed by the experience.  Part of our mission going forward is to support St. Jude through our foundation.  Shannon wanted to make a difference, and we will continue to work towards that goal.

We have reached this season of anniversaries for us.  The next month will be a tough one, but we continue to find strength by sharing memories and stories, by sharing Shannon with others.

Last night, Shannon was everywhere.

She was on the minds of the Mayo and JM/Lourdes girls hockey players who sported lime green ribbons in their hair, and lime green tape on their shin pads and their sticks.

Shannon's friend Taylor shared memories of Shannon and let the crowd know about the kind of spirit Shannon had.  Taylor has known Shannon since kindergarten.  Not a dry eye in the room after that one.

Shannon was on the minds of her former teammates, coaches, and friends who were there.  She was on the minds of the Rochester youth hockey community who showed up to hear us speak and share our message.  People bought t-shirts and bracelets and helmet stickers and helped us raise over $3000 for the Shannon O'Hara Foundation.  Amazing.

Hell, Shannon was even on the zamboni!  Literally.  A tribute to her and her picture now adorn the Graham Arena zamboni.  She must be laughing about that one...

Erin was on people's minds, too.  Her basketball teammates came out to support her as we walked on the ice to speak to the crowd.  Some of these girls never really knew Shannon, but they know Smiley, and they were there for her.  Erin stood proudly as we talked about her sister, and carried herself with a confidence beyond her years.

Tomorrow marks 11 months without Shannon.  The days are moving quickly now, and the memories of a year ago are painful.  But the memories shared last night were happy ones.  Every time we gear up to go speak, I have a teeny tiny panic attack about doing it.  But then when I get there and see my friends supporting us, and I see Shannon's friends honoring her, I remember why I want to do it:  I can't bring her back, but I can carry her spirit forward...

Sunday December 2, 2012

It has been a whirlwind weekend and Sunday night has come much too quickly.  Dan and I spent 14 hours traveling on Friday, had 12 hours at home, and then Saturday morning we were on the road to Mankato for a two day basketball tournament.  Two games Saturday, one night in the Best Western, and two games again on Sunday.

Smiley played a lot of minutes this weekend and even made a great move to the basket for a left handed layup today.  She enjoys the tournaments, but it's as much about the time with friends as it is about the basketball.  When you are an only child, it's good to have teammates.  Shannon's buddy Anna was also along for the weekend to watch her little sisters play.  Erin and Anna have a sweet big sis/little sis vibe, and this picture Dan took of them is so damn cute I have to share:

Now, we will settle in for a busy week ahead.  The calendar has turned to December, and that brings us full circle in some ways.  A year ago, we knew that Shannon's condition was deteriorating, and we made the decision to go to Memphis and try and take part in the clinical trail at St. Jude.

A year ago this coming Tuesday, Shannon skated for the last time.  Ever.  December 4th.  The universe is a strange place - Tuesday night will be at Graham Arena again, this time as a part of the Mayo vs. JM/Lourdes Girls Hockey game being played in memory of Shannon.  Full circle.  We will speak briefly to share our message and our mission, and then we will watch Shannon's friends out there on the ice.

Dan and I have spent a lot of time together this past week and we've spent some of that time sharing and reflecting.  Here are some of the things we think we know:

- We're not so good at small talk anymore.  Meeting new people and getting to know someone is always going to be a challenge from here on out.  Our story of who we are has an element of sadness, no way around that.  

- We still like being together and we enjoy each other's company.  Dan and I are a team.  Thank God for that.

- We are so lucky to have Erin, and when we are away from her, we can't wait to be back together.  In many ways, she's our leader now.

-  We still like to laugh and we laughed a lot this weekend.  Sometimes it's gallows humor, but if we didn't laugh, we'd go crazy.  

-  We can tell stories about Shannon endlessly.  It seems to be coming up more often and more easily these days.  Thank God we have people who will listen.

So, the holiday season is here.  We are treading lightly on these days.  We are not alone, as the holidays are a tough time for many people. We aim for kindness with ourselves, and we try to take each day, and each memory, one at a time.

"Be kind, for everyone you meet is fighting a hard battle." - Plato

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


Dan and I were in two different states today, physically, but somehow we were in the same state of mind mentally.  He called me this morning from South Dakota to say that he was feeling a little down.  I had just finished showering and I had spent those quiet minutes under the hot water feeling the same way.

Hard to believe that a silly holiday like Halloween could trigger melancholy.  But here we are.  Dan is in SD, Erin is off trick or treating with her buddies, and I am home alone handing out candy, thinking about the days when we would take our two girls up and down the street trick or treating.

For years, Shannon and Erin would trick or treat with our neighborhood buddies Abby and Tessa.  Then they would come home with their buckets full of candy and dump them out on the family room floor.  Shannon taught Erin to organize her candy by type so they could see how much they had of each kind. Then they would decide if there was any trading to do.  I think we caught Shannon trying to dupe her younger sister into an unfair trade on more than one occasion.  Erin was a quick study, though, and soon learned to be skeptical of her big sister's offers.

Now, of course, intellectually I know that Shannon wouldn't be trick or treating with Erin at this age, but it's the memory of those days when they did that has me feeling a little off kilter.

There have been a lot of Shannon related interactions this week.  These are good things - talking with hockey teams who want to honor Shannon, and working on paperwork for the foundation - but they also have me feeling blue.

On the one hand, it's exactly what we are aiming for - ways to remember Shannon and keep her spirit alive by helping others.  I don't doubt that that's where my energy needs to be.  I know that I must do these things as part of my own healing process and to make some sense out of this whole tragedy.

But I realized today, that there's a piece of me that's angry that this is my life.  Of course I want to honor Shannon, and I will, but I wish I didn't have to.  On some level, I still wish it wasn't so.  I didn't sign up to be a crusader or an example for others.  I didn't think I'd write a book about losing a child.  I signed up to be a mother and then 12 years later, all hell broke loose, and now I have these new roles that I am not completely comfortable with yet.

But, anger is a part of grief and I just need to remember that whatever I feel, it's o.k.  No right answers here.  This is one of those times when I just need to give myself a break and admit that I don't have it all figured out.  

So this silly little Halloween holiday has me thinking about Shannon, and remembering her in her  costumes through the years. In chronological order:  cat, cow (twice), elephant, tiger, princess, cheerleader, witch, vampire, soccer player, football player, nerd.

While I was in charge of the costumes in those early years, it was pretty standard fare - animals.  Once Shannon took over the costume choices, she tried on a few different personalities.  For those of you who knew her later in her life, it might be hard to picture her as a princess or a cheerleader, but trust me, as a six and seven year old, she owned it!

Thinking of her in each of those get ups makes me smile... and cry.

Erin is out there tonight dressed as Barbie complete with blond wig, tight pink dress, and shiny leggings.  Maybe when she gets home, Erin will sit on the family room floor with me and organize her candy by type...

Sunday October 28, 2012

It was a good productive weekend here and we are now prepped for Halloween.  Erin's costume is ready, pumpkins are carved, and the candy has been purchased.  Of course the forecast calls for lows in the upper 20's here on Wednesday, but that's pretty typical Minnesota Halloween weather.  Erin won't let a little chilly air keep her from collecting free candy...

Basketball season started today with our first practice.  I say "our" because I am helping coach Erin's team this year.  We've got a dozen girls playing on the 7th grade team, so Coach Olson is glad to have a few assistant coaches helping out so we can give the girls a little more one on one attention.

Basketball was my first favorite sport to play when I was a kid and it stayed that way through high school, so it will be fun for me to help out with these girls this year.  It will also keep me busy 3 nights a week all winter, which is probably a good thing.

Hockey season is also underway and Dan and I have been thinking about that, too.  Teams have begun practicing and preparing for their seasons full of games and tournaments and fun.

Shannon would have been a U14B player this year and that's where 9 of her Rebel teammates from last year ended up.  The 14 B's consist of those 9 girls, plus 6 more - most of whom also played with Shannon as some point through the years.

As a team, the 14B's had to come up with a team name.  And, as a team, they wanted to somehow honor Shannon.  They shared with us their team logo:

So, the 14B's will play this season as the Rochester Cannons and hopefully, they will have a lot of fun playing the game that Shannon the Cannon loved so much.  Maybe, just maybe, they will feel her with them out there on the ice.  Dan and I are looking forward to watching them play.

Wednesday October 24, 2012

I still find myself playing the calendar game.  This is something I've always done, comparing one year to the next, gauging progress and change.  It's common for me to comment on something by saying, "A year ago at this time..."  Since April 15th, the calendar game has been less fun than it used to be.

Actually, these days a year ago were some good ones.  Shannon felt good and we were carrying on with school and sports and life.  Reading and re-reading and re re-reading the book in recent days means I know what we were doing almost to the day throughout our journey.  Erin started reading me something from the book the other day and I could recite it back to her, verbatim.  Erin laughed and said "Geez, Mom.  Do you have this thing memorized?"  Um, yeah...

So, that means that I can tell you that last year during the last week of October we were getting the hockey schedule set for the year, starting basketball practices, getting ready for Halloween, and going to celebrate Papa O'Hara's 88th birthday.  I wrote a sentence in this blog last October that read "We continue to try not to be overwhelmed by the big picture because the little picture looks good."  Damn.

It struck me today that, if I think about it, those words ring true for me even now.  I shouldn't project to the future and worry about the big picture.  That's when the sadness and fear creep in.  Stay in the present.  If I look at the little picture that is today, it's a good one.

I taught tennis classes to some fun kids today, and Erin did all her homework and made herself dinner while I was teaching.  Excellent!  Then we were off to Erin's piano lesson where she and Glenna spent part of the lesson talking about the Broadway show we saw.  Glenna just happened to have a book full of Gershwin tunes, and she played a little 'S Wonderful for Erin before sending the book home for us so we could hunt and peck out some of these toe tapping tunes.

Dan is having a good day, too.  He's at the Wisconsin Motor Carriers Annual Show in Green Bay and this year it includes a tour of Lambeau Field.  Even a Packer hater can appreciate a chance to stand on that field.

So, if I look at the little picture, it's a happy one.  If I start to worry about what's ahead - winter, the holidays, etc. - I get scared.  I also know that the calendar game gets tougher in just a few weeks time.  A year ago this was the beginning of the last good month of Shannon's life.  I can't quiet my mind enough to forget that.

This weekend we will prepare for Halloween, and then go celebrate Grandpa Ed's 89th birthday.  Just like we did a year ago.  Same as it ever was.  And totally different.

Saturday October 20, 2012

Home sweet home.  We have returned safely to Rochester and it feels very quiet and spacious here!  Three days in NYC was fantastic, but it's good to be back to our house and our dog and our yard.

Yesterday was a rainy day in New York, but Erin helped us kill of the morning by sleeping in until 11am.  While she snoozed, Dan and I enjoyed our coffee and surfed the web as we peered through the windows at the people hustling up and down the streets.  We are fascinated by people who live and work in that city.  It's a super place to visit, but I don't know if I could live that way.  I like being able to hop in my minivan and run to Target when we are out of milk or toilet paper.  Different strokes for different folks, I suppose.  Maybe in my next life.

Once Erin was awake, we spent our afternoon taking the subway to the Upper East Side and checking out the Metropolitan Museum of Art.  It is a cavernous building and it would take many, many visits to see the whole thing.  We chose a few areas - Ancient Egypt, 19th Century European painting and sculpture, and even some modern and contemporary art.  It was a great way to spend a rainy day, and we all learned a thing or two from listening to the audio guide at various exhibits.

Pondering Pollock

Our final NYC adventure last night provided us with a "full circle moment" as my aunt and uncle Brian and Julie joined us in the city for dinner and a Broadway show, just as they had done 18 months ago when we visited NYC with Shannon and Erin on spring break.  We had a great time with them in March of 2011 just two weeks before Shannon's diagnosis.  We had a great time with them again last night, and that felt good.

We invited cousin Grace along as well so that Erin would have someone to converse with who was not middle age!  So the six of us went to see "Nice Work If You Can Get It" -  a comedy set in the prohibition era that features a couple dozen toe-tapping Gershwin tunes.  We all laughed and enjoyed stars Matthew Broderick and Kelli O'Hara playing their campy characters perfectly.

Dan and Erin and I talked about feeling that, in the grand scheme of things, we are doing all right.  I was relieved to find that a Broadway musical can still make me smile and laugh and want to sing and dance.  Erin, too.  We still laugh at Dan when he's being a dork on the subway. They still poke fun at me being a control freak when I over-coach Erin on what she should wear. We still call Erin out when she gives me or Dan that awful, mean look that only a teenager is capable of giving.  We still find ourselves laughing often.

A part of me, of us, can't believe it, really.  How can we be going off to NYC and having fun and just going on with life?  It seems almost crazy.  Yes, the dynamic is different and we so miss having Shannon with us.  We talked often on this trip about our adventures here last time and Shannon's name was spoken many times. We like that.  She's still with us in so many ways.

As we got off the plane this afternoon, Erin thanked us for a great trip.  Dan and I told her she is so very welcome.  We are feeling grateful today that the three of us have each other.  We three still enjoy an adventure and our lives must go on.  Shannon would want it that way, I just know it...

On Broadway

NYC Adventures

Today we started our adventure by taking the subway to the Empire State Building to check out the view.  It was a gorgeous, warm day and the 360 degree observation deck on the 86th floor provided some breathtaking views.

From there, we walked and shopped our way up 5th Avenue all the way to Central Park.  Erin enjoyed the shopping, Dan enjoyed the people watching.  Both are pretty solid here in Manhattan.

Along the way we stopped in at St. Patrick's Cathedral, an amazing Neo-Gothic structure.  We lit a candle at the shrine to St. Patrick for Shannon.  Of course we find ourselves thinking of her and missing her as always.  We have lots of memories of our last time here as a foursome.  But, we are seeing some different sights this time and we are making new memories now, just the three of us.

We put off the Broadway show until tomorrow and instead hung out with Erin's cousin Grace tonight.  Taking a jam-packed subway ride 60 blocks from 42nd street up to Columbia University at 116th street was an adventure.  Grace loved showing us around her campus, and Erin was taking it all in.  We talked about Erin's desire to be a part of the Columbia class of 2022.  It's good to have goals.

Time now to rest our tired feet and re-charge for one more day NYC...

Just another Wednesday...

We woke Erin up this morning and told her it was time to shower and get ready for the day.  She thought she was going to school.  We told her we had something else in mind - New York City.

Dan and I hatched this plan a few weeks ago and we've been biting our tongues and trying not to spill the beans.  There were a couple of close calls where we almost blew it, but I'm happy to report that Erin was completely surprised and it felt really good to see the sheer joy on her face.  We'd give our kid the world if we could...

So we walked around Midtown Manhattan tonight and ate some pizza.  We took in the freakshow that is Times Square.  I mean, where else can you see Hello Kitty holding hands with Mickey Mouse while listening to a singing cowboy who is wearing nothing but a cowboy hat, boots, and a speedo?  It's quite a sight to see.

Dan and I told Erin this trip is for her so she gets to help plan the agenda.  Tomorrow she wants to see the view from the Empire State Building, do some shopping, and then hopefully take in a Broadway musical.   

That sounds perfect...

Tuesday October 16, 2012

Things seem to be moving fast around here, but it's a good kind of busy.  We are making progress on things that matter to us.  Here's a quick rundown:

Tonight brings us to the end of the 9th grade volleyball season with the last home match against Winona.  Erin had a two hour practice yesterday and still came home wanting to spend more time practicing in the driveway while she waited for dinner to be ready.  I think it's safe to say, she loves volleyball.

We received our incorporation papers in the mail, so the Shannon O'Hara Foundation, Inc. is officially underway.  Applying and receiving non-profit status is quite a process, but that's the next step.  We would like to create a distribution list for those who are interested in receiving updates on the foundation.  If you'd like to be added to the list, log onto the foundation website -  - and click on the "Join our e-mail list" tab.  We will keep you updated on fundraising and upcoming events.

I turned in my final edits on the book today.  That's means I have to be done obsessing about my words and sentences.  Easier said than done for this rookie...  I do feel like it is really taking shape and the marketing efforts have begun.  I sometimes still can't believe this book is going to become a reality, but we're on target for publication this spring.  

So those are the things that have been been occupying my time and it does feel like I'm doing what I'm suppose to be doing, and that feels good.

Dan and I attend Will Canan's funeral yesterday.  Of course I was thinking of my sweet Shannon as I sat there honoring Will's life.  Attending the funeral of another child reminded us again that life is so fragile, so precious.  I wish for peace for the Canans as they walk the road that is ahead.  With awareness of what's around us and gratitude for all that we have, we carry on.

Sunday October 14, 2012

I'm drawing inspiration these last few days from gospel music.  Gospel music from none other than The Boss.  Bruce's Wrecking Ball record includes a song called Rocky Ground that Springsteen tells NY Times John Pareles "The verses are the blues, the chorus is gospel".

Jen and I will see Bruce next month in St. Paul, so I have been spending more time listening through Wrecking Ball.  Like most Springsteen recordings, the more times you hear the more you like it.  And learn from it.

Rocky Ground features sampling from gospel singer Michelle Moore who soulfully recites;

You use your muscle and your mind and you pray your best 
That your best is good enough, the Lord will do the rest 
You raise your children and you teach 'them to walk straight and sure
You pray that hard times, hard times, come no more 
You try to sleep, you toss and turn, the bottom's dropping out 
Where you once had faith now there's only doubt 
You pray for guidance, only silence now meets your prayers 
The morning breaks, you awake but no one's there

I feel like this last week has been filled with challenging news and hard times, hard times.  A colleague lost his brother to a motorcycle crash; a father of three young kids.  Our community lost a warrior in 14-year old Will Canan to brain cancer.  I just can't get the images of these beautiful kids out of my mind.

I think it remains a critical that I stay in the present and remain grateful for what is right here in front of me.  Today is all we have.

We've been traveling over rocky ground, rocky ground 
We've been traveling over rocky ground, rocky ground

Thursday October 11, 2012

We are just about to head out to watch some volleyball tonight.  It's the Mayo Spartans at the Century Panthers in a crosstown rivalry match.  Erin's season is coming to a close soon, but not before a match tonight, a tournament on Saturday, and one final match next Tuesday.  She's really enjoyed being a part of this squad and it's certainly made the last two months fly by.

Sad news here in Rochester today.  14 year old Will Canan passed away today after an almost 9 year battle against recurring brain tumors.  Shannon and Will had some mutual friends in this great community of ours.  Our thoughts and prayers are with the Canan family tonight.

Another reminder to cherish the ones who matter to us for we can't know what the future holds.

"All I know from my own experience is that the more loss we feel the more grateful we should be for whatever it was we had to lose.  It means we had something worth grieving for." - Frank O'Connor

Tuesday October 9, 2012

I want to share details of an interaction I had today that is not uncommon in our “new normal”.

I’m at O’Hare waiting for my connection, sipping on a bold at Starbucks sitting at a communal table with just a seat between me and the cutest family of four.  When you are out on business you can spot leisure travelers from a mile away.  I try not to be bitter but deep down I wish I was them.

Eventually, I strike up a conversation with the mom and the two daughters who are decked out in Chicago touristy gear – their dad had just run Chicago Marathon and they were returning home to Palmer, Alaska.  The girls were super cute, engaged in our conversation, not shy and not at all inappropriate in sharing stories about their dad’s limping from the race.

It was like I was talking to Shannon and Erin two years ago.  Sure enough, the oldest is 11 and the younger daughter is 9.

Invariable, the conversation turns to me and my girls and I just seized up when Mom (Leslie) asked how old my kids were.  I stumbled and stammered before lying and telling them my girls were 11 and 13.  “Just a stage ahead of your girls”, I told Leslie.   To use Erin’s words, it was totally awk.

Why couldn’t I just tell the truth?  Well, they were really happy and I didn’t feel like buzz killing their fun. And they only had another 20 minutes before their flight boarded.  But why didn’t I just say; “I have an 11-year old daughter named Erin”?  IDK.

So that’s how it goes out here sometimes.  

Sunday October 7, 2012

Yesterday marked nine months since Shannon's passing and the Brains Together For A Cure walk brought together family and friends to support us an remember Shannon.  There were aunts and uncles and cousins and hockey teammates of Shannon and basketball teammates of Erin and teachers and classmates of both girls.

Dan was the keynote speaker and he spoke about awareness and gratitude.  He talked about how relationships - connecting with others - is what matters most in this world.  He recognized the connection of those people there in that room who had all been touched by brain cancer in some way, and he encouraged everyone to continue to live each day being aware of what is around you and grateful for the good in our lives.

I did my first public speaking about Shannon, reading a piece I wrote for the book.  I read the opening to the chapter titled, Hope.  My message was there is always something to look towards, to work towards.  There is always a reason for hope.  Dan and I received some nice feedback afterwards, and that felt good.

Awareness, gratitude, hope... these things carry us through and help us keep getting up each day and doing the best we can.

We also shared the news that we are starting our own foundation in memory of Shannon.  We have filed for incorporation and once that's approved, we will apply for non profit status that will allow us to increase our fundraising efforts in Shannon's memory.  Check it out at:

We have already committed to our scholarship efforts with Rochester Youth Hockey, but what if we can do more?  What if we can help fund brain tumor research each year?  What if we can grow the fund big enough to help out more local youths through donations to other endeavors in Shannon's honor?  What if?  We feel compelled to do good things in her memory, so this is a start.

So, after an emotional week, we ended on the upswing.  It's been a good weekend sharing our story and remembering Shannon, and we had lots of help.  Thanks to Team Shannon for being at the walk yesterday.  Especially those hockey teammates who came directly from tryouts, all sweaty yet ready to laugh and cry with us.  And a special thanks to Shannon's classmates who came out to walk.  Seeing those 9th graders - especially the boys - there to honor Shannon was pretty damn cool.  I love that you liked my kid and you're not afraid to show it.

People were remembering Shannon in other ways on Saturday, too.  We saw many posts acknowledging the 9 month anniversary date.  And, as Shannon's friends dressed up for the homecoming dance, they were remembering the one who was missing, and in their own way, they were taking Shannon with them...

Thursday October 4, 2012

It's homecoming week for Mayo High School.  Erin was busy this afternoon making a sign for the Mayo Volleyball float and she will be throwing out some candy during the parade tomorrow.  Sounds like it will be a chilly night at the football game, but Erin will be there no matter what so she can hang out with her buddies.  She loves that.

Shannon's classmates are getting ready for their first official homecoming as high schoolers.  Many of them are going to the dance on Saturday.  Some are going just with friends, some are going with a date.  Would Shannon be going?  I think so. Would she have a date?  If she wanted to.  Would they be going as friends or as something more?  Hmm...  I just can't piece it all together in my mind.

All the chatter about it brought me to tears earlier this week.  In public.  Damn, I hate when that happens and trust me, it still happens.  Creeping up on nine months without Shannon and tears are still close by at times.

So, there's a heaviness in my heart this week, but we will get through it.  Another step in the journey, another marker in time, another chance to persevere.

We're gearing up for Saturday's Brains Together For a Cure walk.  Remember to wear your Shannon shirts - green ones, white ones, black ones, grey ones - anything goes.  According to the forecast, you might have to have some layers underneath!

The walk starts at 10am at RCTC and Dan will speak during the program following the walk.  If you can, come and help us support the research efforts taking place here at the Mayo Clinic.

Come and help us remember and honor Shannon.

Tuesday October 2, 2012

"You will lose someone you can't live without, and you heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved.  But this is also the good news. They live forever in your broken heart that doesn't seal back up.  And you come through.  It's like having a broken leg that never heals perfectly, that still hurts when the weather gets cold, but you learn to dance with the limp." - Anne Lamott

Sunday September 30, 2012

These past few days have provided us with some of that gorgeous fall weather that reminds us why we live in Minnesota.  Cool nights, warm days, and brilliant colors on the landscape.  We feel more acutely aware of these things, grateful for what we can see and feel and experience.

Shannon's hockey buddies are all in the midst of hockey tryouts.  It's an excruciating time - for parents and kids alike!  We received some sweet text messages and Facebook posts from several of the girls, remembering Shannon, missing her.  One friend commented that she was missing Shannon's positive attitude out there on the ice and another friend wore her Shannon shirt so that Shannon could be there in spirit.  So sweet and dear... and painful.  A year ago, Shannon was there, fighting off the fatigue of a post-chemo week and giving it her all.

This week will also be homecoming week at Mayo High School.  Again, there will be friends missing our girl, and we will be missing her, too, as another rite of passage passes without her.  We remember very clearly having a conversation with Shannon last year where she talked about how fun homecoming week is and that it will be "even better next year when I'm in high school".  I still find myself wondering how can it be that she is not here?

So, we are feeling this convergence of people and events and it seems that our memories of Shannon are all around us.  Erin's volleyball team played in a tournament here in town yesterday.  It warms our hearts to watch Erin out there having fun and working hard.  She is enjoying being a Spartan.  All four local high schools were playing in the tournament, so there were lots of Rochesterites around.  We saw people from church, former tennis students of mine, and former hockey teammates of Shannon.  Lots of conversations, and much of it centered on Shannon.  One of the lessons we've learned from writing this blog, is that everyone has a story.  People suffer loss and heartache and people search for meaning and perspective.

By sharing this piece of our world, we've opened up the lines of communication in a way.  People share a bit more of themselves with us now.  What a gift that is.  What a nice way to live, knowing that no one is alone, that we all struggle, and that people can persevere and maybe, along the way, become stronger and wiser.

I was reading this week about the progression of grief and the turning points along the way.  Things like anniversaries and songs aggravate the pain and loss and that may always be so.  But, with experience and through time, we can learn to treasure these memories and see them as reminders of the things that make up our lives.  All that has happened to us - each of us - becomes a part of us.  Some of it is bad, some of it is good, but all of it is ours.  There's no denying it and no escaping it, so we need to do our best to accept it.

The sun is up and shining now.  It's another beautiful autumn day here in our corner of the world...