Wednesday October 30, 2013

Tonight, Erin and I were on the move:  I picked her up from Mayo HS after practice, off to Chipotle for a quick dinner, then a haircut for her, and finally a piano lesson.  Sometimes I drive 80 miles and don't go anywhere...

On our ride home, we were discussing the homework on her docket tonight.  I mentioned an assignment that she has to finish.  This exchange ensued:

"You're about halfway done with that, right?"
"Um, not exactly."
"But, I thought that's what you told me?"
"Mom, sometimes I lie to you to make you happy."

We locked eyes... and both started laughing...

Miss Erin makes me laugh and smile almost every day.  I'm grateful she's here, showing me the way.

Sunday October 27, 2013

We spent the weekend gathered with the O'Hara clan to celebrate the patriarch's birthday.  Ed O. will turn 90 on Tuesday.

All nine kids gathered along with most of the spouses and some of the grandchildren.  You think turning ninety is a challenge, you should try to organize this crew for a group picture!  After many directions were given and several opinions were voiced, we managed this:

So, another event, another milestone, another marker of time passing.  We laughed plenty this weekend, but we had our solemn moments as well.

We went to mass as a whole family this morning at Christ the King in Minneapolis.  There, we got a chance to see the memorial brick that Ed and Tess purchased in Shannon's memory.  There it is at the front entrance:

Shannon O'Hara
small but wise
7/29/1998 - 1/6/2012

We have written about our pain and our angst often over these past few weeks.  In some ways it's comforting to know people are still following our journey via this blog.  So many kind words have been sent our way recently.  

I think it's just hard to put into words all the things we are feeling.  It's the forever thing that's weighing so heavily on us.  We made it through our first holiday season without Shannon, but now another one is approaching.  And then they'll be another, and another, and another...

Acceptance continues to be our goal.  Acceptance that this is who we are now.  Life is still good, although not exactly as we imagined it would be.  There is some freedom in realizing we don't really have control and so it's not worth worrying.  What will be will be.  We have learned that lesson.

We also recognize that new pains, new hurts, new tragedies come every day in this world.  We want to be of help to those who are traveling a similar path.  In the past couple of weeks, I have been a part of a planning committee for a Brain Tumor Patient Symposium, and also been taking part in a bereavement group for families who lost their children to cancer.  We continue with our work on the foundation and the book.  In the next two weeks, we will be visiting with the high schoolers who are eligible to apply for the Shannon O'Hara Memorial Scholarship this year.  We continue to try and make Shannon's life matter.

Life continues to be very busy for Dan and Erin, and I continue to want to figure out what's next for me.  

So many people have been asking me how my writing class is going.  I don't exactly know how to answer this question... My hope was that I would be prompted by this class to expand my writing chops and begin to write about other things.  I don't want to be a one-trick pony.  

But, in class, the prompts we are given and the assignments we have seem to always lead me back to my favorite subject.  

The exercises we did in class two weeks ago illustrates my struggle.  The first prompt was to close your eyes and find the first image that comes to your mind, then go to the page and write about it for five straight minutes straight without stopping.  Guess who paid my mind's eye a visit.

The next exercise was to use color as a prompt.  Our instructor pulled out a giant box of crayons and said, "when the box gets to you, pick the first color that catches your eye, then color with it, write with it, write about it, dive into that color."  Yep.  Lime green.

So, there I am, trying to expand my world, and I keep coming back to the same place.  I have been frustrated by this, but I have also received some sound advice:  if this is what comes, then let it flow.   I guess it just means I still have things to say about my favorite subject... 

My new strategy is to just let the assignments take me where I need to go.  

For our homework last week, we carried the color idea further, paying attention to a time during the week when color affected us and writing from that experience.  Here's my piece:

This morning at 1:17 am, my dog woke me for a trip outside.  She was unsettled last night.  I have been unsettled for days.  

In the darkness of the middle of the night, snow was falling.  The first white flakes of the season for us.  White, almost translucent snow.  It’s beautiful and pure and always a shock when it happens again.  You think I’d be used to it after 44 years of living in Minnesota.  But, year after year, it catches me by surprise.

So there, in my pj’s, at 1:17am, I watched the white, white snow fall to the ground.  Even snow reminds me of Shannon.  Everything leads me back to her.

We used to make a giant sledding run in our backyard.  It had twists and turns and we even needed to create a berm to keep the sleds on the track.  Shannon was fearless, younger sister Erin a little more cautious.

Over and over they would come down the hill, fast enough to make mom nervous.  Adjustments would be made to the track - holes patched, snow added - all in the hopes of speeding it up.  This was Shannon and her dad’s specialty:  push it to the limit.  

We haven’t had the sledding run for a couple of years now.  Two years ago, Shannon was too sick to sled.  Last year, our first winter without her, we tried.  Erin and Dan went out and worked on the run and attempted to get it going.  They didn’t succeed.  They got too sad.  It was too lonely without her.

So, this is how my day has started - 1:17am, the white snow, and Shannon...

Come Walk With Us - November 23rd

We are excited to take part in this event for the first time this year.  The St. Jude Give thanks.  Walk.  will take place on Saturday, November 23rd at Target Field in Minneapolis.  On that day, similar walks will be taking place in 75 cities all around the country as the kickoff of the St. Jude annual holiday campaign, Thanks and Giving.

Registration for this family-friendly event is free.  It's just a 5K walk, three laps around the Target Field Concourse.  All participants are encouraged to raise money to help save kids battling cancer and other deadly diseases.  We have a team already formed, so when you register, make sure you join Team Shannon O'Hara Foundation.

Click the link below and choose one of two options:

1.  Join our Team -   If you can join us, register for the walk.  That's all you have to do.  If you would like, feel free to do some fundraising or make a donation on your own as you register.  Every little bit helps, so no donation is too small.  Dan, Erin and I got us started.

2.  Support our Team - If you can't join us but would like to donate, you may choose any member of Team SOF and make a donation to their walk.  I suggest you choose Erin O'Hara :)

We hope our Twin Cities friends and followers can come out to help us support St. Jude and raise money in Shannon's memory.  We will be out there in our "I walk for Shannon" shirts, and we'd love to have some company.

Here's the link:  Register or Support Team Shannon O'Hara Foundation

Tuesday October 22, 2013

It was a productive weekend around here as we are doing our best to pull ourselves forward.

Erin made the most of her MEA break - doing a lot of catch up on homework and hanging out with friends each day.  She managed to write three papers, read 200 pages and still had time to watch a volleyball tournament here, a Gopher volleyball game at the U of M, and check out a Halloween event, Fright on the Farm.  She and her buddies laughed and screamed their way through the zombies and ghosts.

Dan and I just take one look at her, and it reminds us why we need to keep plugging along.  If nothing else, we do it for Erin.

When we get too far ahead of ourselves, we get worried about how we are going to cope with all the days ahead without Shannon.  The holidays, the anniversaries, the milestones, the rest of our lives...

But, there are still things we want to do, places we want to go, milestones that we will reach, even without Shannon.  Life is still good.  It's not as easy as it once was, but it's still good.

So, back to the basics.  We can do it if we take it one day at a time.  I shouldn't be worried about Thanksgiving or Christmas or January 6th.  I only need to focus on today.  Get up, do what needs doing today, and don't worry about the rest.

That's my plan for this week.  I'll keep you posted...

The Shannon Moon

We're hoping the beautiful reminder of our Angel watching overhead will show us the way out of the current "dark period" we are experiencing as a family.

It's interesting how grief comes in waves for each of us.  In the past, I've drawn analogies between alcohol recovery and recovery from loss. But there is a major distinction;  the further I get away from alcohol the better it gets.  Our world will never be better without Shannon in it.

Thursday October 17th, 2013

I had a good cry yesterday.  I might have another today.  I wonder if it will still feel raw when I'm 50?  Or 70?

I'm just feeling the loss of Shannon so acutely lately and missing her so much.  It seems like I've had a lot of contact with her friends in recent days -  there they are at the Mayo HS sporting events, supporting their friends.  Some of them are even driving themselves around these days.  I wonder if Shannon would have been a good driver...

At the volleyball game the other night, all of Shannon's best buddies were there.  One was playing, and the other 4 were in the stands to cheer their friend on.  These are the same five girls that were by Shannon's side, sitting at her lunch table, rooting her on.

We have this picture of those girls from Homecoming 2011.  Shannon and her friends made a pyramid with Shannon on the top.  She looked good, happy.  So, fast forward two years later and I found myself looking at those girls, sitting in front of me at the volleyball game.  One of their Grandmas took a photo of them and showed it to me.  They all look beautiful and happy.  It made me so sad.

As time passes, people are less aware of my loss, or less sensitive it seems.  People don't want to revisit the sad things, people want to move on.  It's perfectly normal behavior, and it's what you'd expect, but it doesn't make it any easier.

For us, we don't have that luxury.  Yes, we move on and move forward, but we have no choice but to revisit the sadness from time to time.  That is a part of who we are, and I think it always will be.  We have to keep Shannon in our memory, because that is where she lives.  That's why I am pretty certain I'll be able to muster up a good cry, even 30 years down the road.

The changing of the seasons, the impending holidays, and the anniversary are all looming, and I am feeling it.

Wednesday October 16, 2013

Volleyball season ended last night for the 9th grade squad.  It's been a really positive experience for Erin - learning a new position and getting the opportunity to play all the time.  She's got good leadership skills, and teammates respond to her.

A friend of ours watched her play last night and sent me a text afterwards saying "I saw a little bit of Dan out there."  I think its the facial expressions...

So, another season is behind us.  MEA break starts tonight.  Time marches on.

Sunday October 13, 2013

Ahh, Sunday.  A day of rest is always welcome.  Dan's chili is simmering on the stove and we are settling in to watch a few hours of football.

It's just a three day week ahead for Erin and it will also bring the end of the fall volleyball season for her.  One more match on Tuesday night, and that's that.  It's been a great one and Erin is looking forward to playing club volleyball this winter.

Erin has decided not to play basketball this year.  She is relieved to not have to commit so much time to an activity where she didn't get many opportunities to play.  Volleyball and golf will suffice.

I've been keeping busy, including driving to the cities each week for a writing class.  It's been engaging for me to meet new people and try to develop my writing skills.  I'm still not sure where I'm headed or what exactly I want to do, but at least I am doing something.  And, I get to go hang out in Minneapolis once a week and pretend I'm an artist.

Dan has been getting in the last licks on the golf course for the season in between his busy travel weeks.  Michigan has been requiring his attention about once a month, and that involves air travel.  The next couple weeks he will stay on the ground, traveling to North Dakota and Wisconsin.  Nothing but glamour out there on the road.

So, we are heading into the late fall/winter without much on the calendar.  That's OK.  I think.

Thursday October 10, 2013

It's Erin's half birthday today.  This struck me today when 10/10 came up on the calendar.  I found myself thinking about those years when every six months was a milestone.  One of my favorite Erin stories took place around one of those "half birthdays".  Erin was being precocious and I commented to her - "You are one of a kind, Erin."  She looked me straight in the eye and said, "No I'm not, I'm two and a half."

Yesterday after I spoke to the IBM employees, many people came up to me and shared with me some connection they have to our story.  Shannon's tentacles still reach many people, and Dan and I always love to hear from people about how they knew our daughter or, knew of our daughter through some connection.  It's sort of a "Six Degrees of Shannon" thing.

The most special connection yesterday, though, was a lady who had been Erin's student teacher in third grade.  She had been following the story and she told me, "All along the way, I've been thinking about Erin.  How is she doing?"

It's easy to get caught up in our Shannon events.  They've become such a part of who we are and what we do.  The calendar turns over and we begin again with walks and hockey tournaments and fundraising.  Sometimes I do have to stop and think, "What must Erin be feeling about all this?"  It's a part of who we are, and it's become our new normal (yet again). 

I do my best to be there for Erin and to let it be about Erin whenever possible.  I try not to wear any of my Shannon shirts when I'm going to one of Erin's games.  (This is becoming more difficult as the percentage of my wardrobe occupied by Shannon shirts continues to increase.)

This is the age old parenting dilemma with a whole new twist.  Don't we all strive to treat our children equally?  Play no favorites?  How can I possible succeed at this?  Shannon will never make another mistake or disappoint me or roll her eyes at me again.  Let's just say, Erin is in a really tough spot.

So, I find myself thinking about Erin.  I love her to pieces.  I hope she can feel that.


Just a heads up - if you work at IBM in Rochester, or if you know someone who does - let them know that Dan and I will be speaking tomorrow morning (Wednesday, 10/9) at 10:30 as part of the kickoff for their Employee Charitable Contribution Campaign.

We'll be sharing our story and a few lucky people will win a signed copy of Determined to Matter.  Hope to see some of you there!

Sunday October 6, 2013

Another 6th of the month, and another "Shannon" event behind us.  She's been gone now 21 months...

Yesterday's event was the annual Brains Together For A Cure walk.  In 2011, Shannon was there with us, in 2012 we walked in her memory, and in 2013 we walked to raise money and honor Shannon's wish to make a difference.

Seeing our faithful friends show up and support the cause warms our hearts.  For me, Dan, and Erin it helps us to know that people remember Shannon and that they continue to fight with us for a cure.  Erin's friends showed up, my friends showed up, Dan's friends showed up and yes, Shannon's friends showed up, too.

We heard yesterday that the research started by a grant from Brains Together For A Cure is now a 1.1 million dollar federally funded project.  A doctor who treated Shannon right here at the Mayo Clinic is pushing ahead to improve the science of radiation treatments and eventually, hopefully improve the standard course of treatment.

When I sometimes feel defeated, wondering how will things ever change, I will try to remember that story.  Local fundraising that supports local research means that all those $20 walk registrations added up to a $50,000 grant that turned into a $1.1 million research project.  That's why we walk, now.  Not only to remember, but to help make a difference.

After all of the "Shannon events" of the past few weeks, we wanted to do something for Erin yesterday, too.  What she really wanted was a chance to meet her new first cousin, once removed.  So, off to St. Paul to meet baby Oliver.

While we were there, baby Ollie slept peacefully in Erin's arms.  (To the slight chagrin of Ollie's parents who knew that sleeping the afternoon away meant staying up all night.  Again.)  Erin had never held a baby.  Up until now, Erin has been the "baby" of the O'Hara family.  But not anymore.

I'm sure we will be headed back to St. Paul again soon for some more cousin time, once removed...

Friday October 4, 2013

Don't forget - tomorrow is the Brains Together For A Cure walk - rain or shine at RCTC.  If necessary, the walk will take place on the inside track.

Registration starts at 9am, the walk begins at 10.  Team Shannon will be sporting our sweet new t-shirts.  Hope to see y'all there!

Tuesday October 1, 2013

Well, the world hasn't gotten any less crazy since my last post.  Our government is now shut down in protest of a law that was already passed.  Hmm... I'm going to try and take the advice of my fortune cookie and look not for people's weaknesses, but for their strengths.  Congress is making that a difficult task...

At least there are some positives for Team O'Hara this week.  Erin had a fun weekend playing in a volleyball tournament.  She played every minute of 8 straight games and then came home and took a three hour nap.  Tonight is parent's night at the home volleyball match, and while Dan has to be in Michigan, I will represent.  Just two weeks left in their season.  Time does fly...

We are gearing up for this weekend's Brains Together For A Cure walk.  Rain or shine, we will be at the RCTC Fieldhouse wearing our new t-shirts and walking for Shannon.  Two years ago, she walked with us... Sometimes I hate that time flies...

In any event, if you can join us - even last minute - we'd love to have a big crew wearing any variation of Shannon shirt that you own.  Determined to Matter will be for sale as well, so it will be a good day for the Shannon O'Hara Foundation as well as Brains Together For A Cure.  Registration starts at 9:00am.

The most positive news for Team O'Hara this week was the birth of Erin's new cousin, once removed.  Oliver Henry Mackaman was welcomed into the world by Erin's cousin Maggie O'Hara and her husband, Doug.  A healthy baby boy, the first of the next generation for our family.  When the circle of life works perfectly, it's a beautiful thing.  Erin can't wait to meet the new little guy.

So, October is here, the government is closed, and this weekend we will walk for Shannon.  That about sums it up.

Erin has been listening to music a lot lately and she's even been deejaying for me in the car via her iPhone. She played a song for me the other day from The Fray, and it's called Ungodly Hour.  Erin's favorite line from the song has become mine, too:

"They say the best way out is through..."