Tuesday April 30, 2013

I am back in Rochester this morning after a wonderful girl's weekend away.  Our days consisted of coffee, tennis, beach walks, great food, golf, wine, conversation, and laughter.  Perfect.  Wonderful to get away, and great to come home.  It appears Erin did a good job of taking care of Dan.

I feel so lucky for the relationships in my life at this point in time.  The next 32 days are going to be crazy as we reach the publication date for Determined to Matter on June 1st, but I've got a great group of friends and a great family who will help me navigate yet another new normal.

More to say, but no time.  There's laundry to do, groceries to buy, calendars to update, and bills to pay.  It's time for re-entry...

Friday April 26, 2013

When the cat's away...

I just dumped Jen at the curb at RST.  She and three gal pals are flying to Jacksonville FL, jumping in a car and driving up to Jeckyll Island Georgia.  They will play tennis and talk about their husbands for a few days.

Me and Ms. E have a busy weekend ahead  and we are really excited for the first spring warm up.  Temps in the 60's and maybe some 70's are predicted throughout Minnesota this weekend.  I just might have to break out the Shannon O'Hara golf cart.

Erin informed me at breakfast that it would be OK if I played both Saturday and Sunday mornings this weekend.  I think I just may take her up on that.  (I think what she really wants is a sleep-in-Sunday).  It is amazing what the prospect of out-of-doors activity does for one's energy level.

So once I take care of some work today - I might find my way up to the driving range.

Erin has finally been able to hit balls and practice this week with the Mayo Girls Golf Team.  Because of our snowy April, it will be a short season which is a shame because the Spartans have experience and depth.  Basically, it will be a one month sprint to state for Sparty!
Coach Jen and Smiley

Wednesday April 24, 2013

Ah, the sun is showing itself today.  Excellent.  It's still only 30 degrees out there, but we all need some solar therapy, so it's a start.

Yesterday, Dan and I took a walk together on the cold, hard ground.  The wind was whipping and the ground felt cold.  But, we walked and talked and it felt good.

We talked about his work - crazy times in the trucking industry right now.  We talked about my work - I have many events in the month of May related to the launch of the book.  And, of course, we talked about our kids.  Plural.

Then, Dan headed off to a meeting.  His AA meeting held special significance yesterday as he received his chip marking 5 years of sobriety for him.  I couldn't be more proud or more grateful.

This morning, we were remembering that time 5 years ago.  Remembering the pain, remembering the fear, remembering the anger, and remembering the little bits of hope we each had that things could be different.

We had a good life before, but our lives changed for the better.   I always loved Dan, but he became a better man in sobriety.  And, luckily, he's still the same funny, crazy, sensitive guy I fell in love with way back when.

I became a better person, too.  Watching him and supporting him has taught me much about acceptance and about staying in the present.

I remember thinking at that time that this has to be the toughest thing we will ever have to go through as a couple. But, we were resolved to stick together.  And we did.  Maybe going through that together was just training wheels for what was to come...

The lessons we learned about open and honest communication and the things we learned and continue to learn about each other, and ourselves, are making us better.  Those lessons helped Dan and I get through Shannon's illness and her passing.  We are closer now than ever.

Dan and I have an inside joke that marriage is really about finding someone that can deal with your bullshit.  We all have baggage, so you have to find the right person to put up with your particular issues, and it has to be reciprocal, and then you'll be in good shape!

All joking aside, I'm proud of my guy, and feeling grateful today...

Sunday April 21, 2013

We are home now, exhausted from an emotional weekend.  The services to remember Henry Mackaman were beautiful - and gut wrenching.  It's completely unnatural to be saying goodbye to someone who is so young.  Our extended O'Hara family knows the feeling all too well...

But, there is beauty in the reminders that each life matters.  That's the good part, right?  Those people were there to remember because Henry mattered.  People liked Henry because he was genuine.  He was himself.  He was the kind of kid you'd want to hang around.  So reminiscent of our dear girl.

It felt good to be surrounded by family, and Erin was happy to get to hang out with all her cousins.  Such a tight bond these cousins have all formed over the past two years. This weekend, they shared lots of hugs, laughter, and tears.  And we all shared lots of music.  Henry was an avid musician, and playing some live music was the best way to honor his memory.  So, family and friends held an Irish wake on Friday night, playing a show at a local establishment.  We sang and danced and grieved.

The Saturday memorial service brought more music and words of solace and encouragement.  Beautiful words from family and friends.  Shannon's name was mentioned from the altar, and for many of us, we were thinking about Henry and Shannon simultaneously.  The four pews of O'Haras - ranging in age from 12 to 89 - all had their minds on not one, but two kids gone too soon.

Dan, Erin and I feel for Henry's family - immediate and extended - as they now start down the path of re-learning how to live.  They are changed in ways they don't even realize yet.  Erin shared a most heartfelt hug with Owen, Henry's younger brother.  Erin hugged this young man and told him, "You can get through this.  We'll stick together."  Damn, she is a wise old soul...

 I was left with the feeling that I was being reminded one more time by the universe to try and live a good life.  Leave your presence with those you meet by engaging in the human experience.  We don't get to choose how long we're here, but we do get to choose how we spend that time.  Whether you live to be 21, or 89, or 13, make it matter, and enjoy it while you are here...

Thursday April 18, 2013

This week just seems to be dragging on and on.  Maybe it's the weather.  Maybe it's the tragic events in Boston.  Maybe it's Dan trying to get home through airport delays and flight cancellations for the second week in a row.  Maybe it's knowing we have a memorial service and funeral to attend this weekend.

Maybe it's the randomness of life that's got me feeling a little bit blue...

We try to stay present and "enjoy the day", but some days that's just harder than others.  So much sadness and angst and grief in the world lately.  It's hard to hold your head up sometimes.

But, I try to come back to the human connections.  In tragedy, people's resolve is steeled and we look to one another for reassurance.  That's the good in the world. That's the light.  Look for it.  Be it.  The future is unknowable.  Do what you can while you are here.

"When you find yourself overpowered by melancholy, the best way is to go out and do something kind to somebody." - John Keble

2 years A.D. II

I hiked the Willow Creek Reservoir with Sunny the Wonderdog and listened to the Shannon Blog playlist.  It was cold and blustery but it felt good to be out in nature.

The migrating birds don't seem to know what the heck is going on as winter will not let go.  The waterfowl and prairie birds are out in flocks but appear a bit confused.  Mergansers, Wood Ducks, Mallards, Canadian Geese and Robins, Cardinals, Chickadees, Blue Jays and Bluebirds are out in force and in search of spring.

Impossible not to reflect on the cold and blustery April 15 of 2011 when Shannon's tumor was discovered.  The day the music changed.  Jason Mraz and Coldplay and Sheryl Crow songs brought back a flood of memories.  I recall hiking to these same songs and wondering what life will be like in our world when Shannon is gone.

The answer is that we are surviving and most days we are thriving and some days suck.  And I'm confident that will never change.  Shannon made us better just like Erin and Jen make me better.  I am grateful.

The song that worked for me today was a Marvin Gaye and Tammy Terrell collaboration, What You Gave Me;

Like a breath of spring you came/
And as you leave I can only sigh your name/
Cries of anguish echo from way down/
But will never reach my lips to make a sound/
Though it seems my world is crumbling/
Honey you don't owe me anything/ Cause
What you gave me is more than enough to last

2 Years A.D.

April 15th will forever be diagnosis day for us.

(It's also my niece's birthday - Happy Birthday, Laurynn!)

Erin brought up diagnosis day on the way to school today.  Maybe it's a sign of progress for me that it wasn't the first thing I thought about this morning.  Maybe it's that I was distracted the dental implant appointment I had this morning.   As I drove to the Mayo Clinic, I recounted the events of that day...

But, today is a different day, 2 years after diagnosis (2 A.D.).  We are optimistic as we continue to heal and move forward.  It makes me think of the lyrics from a Counting Crows song titled A Long December: "...and there's reason to believe, maybe this year will be better than the last..."

Today, we are doing alright.  Year 2 A.D., bring it on...

Sunday April 14, 2013

We had a wonderful night last night at the Bassmasters event, helping raise money for St. Jude and the Shannon O'Hara Foundation.  It was great to have some familiar faces in the crowd as Dan spoke and I read from the book.  Erin got in on the act, too, helping us draw some raffle winners and stepping up to the podium to read the names.  Her poise and presence makes us so proud.

St. Jude is an amazing place, and after we spoke a mother and her beautiful, bald-headed boy took the stage and shared their story.  Through tears, the mother told how, even though they haven't been to the hospital in Memphis, St. Jude saved her boy's life.  Research done at St. Jude and the protocol they developed for his type of tumor is shared with other research hospitals and is being used right here at the Mayo Clinic.  So, this family could stay local and still benefit from the advancements made in Memphis.  He is 9 months in remission.  Now that's a cool story.

Research at St. Jude was the theme of our story last night, too.  We had asked Dr. Wetmore for an update on Shannon's cells and we shared her note with last night's audience:

Shannon's cells are growing very well! They are now acclimated to a 384-well plate and we are screening compounds (like about 200,000 of them) to see what kills them.  We have a library of "compounds" - mostly drugs and anything with anti-cancer or cell activity.  We will then narrow down to the "hits" and do a dose response curve on them and identify some leads that may be taken to clinic.  Once we have identified some compounds that kill the DIPG cells in the dish we will move to mice and treat mice carrying tumor cells with the drug and make sure it works in vivo.  Then I will start negotiating with drug company to get the compound and start writing (another) protocol to bring it to clinical trial.  It will be exciting.  Shannon's gift lives on.  Really, its the best growing cell line that I have. 

We think that's a pretty cool story, too...

Thursday April 11, 2013

Erin is sleeping in today as there is no school.  We are having yet another snow day.  On April 11th.  This is one of the worst stretches of "spring" weather I can remember.  It's gotta turn eventually...

Erin's birthday was low key, but a success.  Her friends at school remembered her big day and each of her classes sang Happy Birthday.  After school, it was take out food and an afternoon movie - in front of the fireplace.  She finished the day off with volleyball practice and Dan and I showed up at the end with ice cream treats for everyone.

It was the best we could do, all things considered.  Our family has been dealing with some tough news this week, and it has conjured up all sorts of memories and emotions.

Erin's cousin Maggie and her husband, Doug, have been tireless supporters of ours on our journey with Shannon.  They darkened our door many times and shared many words of encouragement with us along the way.  Maggie and Doug are the impetus for our European vacation this summer, helping us plan and planning to be there to share in our adventure.

Doug has two sons, Henry and Owen.  Henry, a student at the University of Wisconsin, started feeling ill over the weekend.  Monday, he walked into the ER and, within a matter of hours, he was non-responsive with swelling in his brain.  Meningitis.  Every effort was made to reduce the swelling, but to no avail.  Henry is gone.

Doug, Maggie, Henry's mom Meredith, and Henry's brother Owen have joined our terrible club.  We are beyond heartsick for them as we know the path they are beginning to travel.  We will be there for them and offer any help and support we can.  Erin's first words upon hearing the news were, "Poor Owen."  Doug and Maggie have built in "safe people" right here on Willow Lane.  I hope that brings them some small consolation.

Rest in peace, Henry Mackaman.  Wherever you are, please find Shannon and say hello.

Happy Birthday Erin!

Miss E is 12 today.  Finally, working her way towards teenagerdom.  She seems much older than that.  Dan and I love her more than she could possibly imagine.

Saturday April 6, 2013

Our Spring Break week will come to a close tomorrow, but we've packed a lot in:  a trip to Vegas, three days of work for Dan, a trip to the Mall of America for me and Erin, a sleepover for Erin at a friend's house, and we will finish it off with a volleyball tournament tomorrow.  Uff da.

You will all be happy to know that Erin followed through on her offer to help me improve my wardrobe.  The trip to MOA was more about me and less about her and all those hours she's spent watching "What Not To Wear" came in handy!  All kidding aside, Miss E was very helpful and we really had a good time shopping.  Best purchase of the day - some kick ass boots.  (Erin already asked to borrow them, so that's a pretty good endorsement!)

We were thinking back to last spring break when we made ourselves go on vacation for the first time without Shannon.  That was a struggle.  We were in Florida trying to find our rhythm as a family of three, and we were still reeling so from our loss and still so emotional.

This year, we can honestly say we are doing better.  It's never going to be over, but we talk more about Shannon in happy ways now.  We are gearing up for next weekend's St. Jude Fundraiser, and we are excited to share our update about Shannon's cells and the foundation.  I'll also get a chance to read from Determined to Matter and raffle off a couple of copies to be sent out as soon as I get them from the printer.  All good stuff.

We're doing better, no doubt, but we still catch ourselves thinking about the "what if" every now and then.  Dan and I are watching the Twins game tonight and they just showed a young lady who is spending her 21st birthday with her dad at the Twins game in Baltimore.  Dan and I talked about how that would have been Shannon.  Shannon also had a tradition of going to Twins games on her birthday - I think we did it for her 10th, 11th, 12th, and of course her 13th birthday with Grandma and Papa in Oakland.

So, little moments are hard sometimes, but the big picture is pretty happy for us.  We are healing...

Wednesday April 3, 2013

Today is a typical return-from-vacation day:  doing laundry, getting groceries, catching up on the mail, etc... the hardest part about today is the shock to the body going from 80 degree temps to highs trying to reach 40 today.  Melt snow, melt...

Our trip to Vegas was a success.  It was our first time there without Shannon, and of course, that conjures up memories.  Shannon and Erin made four trips out there to visit Grandma and Papa, and they created some pretty good memories.  Grandma is an expert at spoiling her grandkids.  For Erin and Shannon, what happened in Vegas at Grandma's house stayed on Grandma's credit card!  Grandma wouldn't have had it any other way...

This first time without Shannon, it was great for Erin to have a friend along.  Going to the M& M store or getting a mani/pedi is more fun to do with someone else, and Erin and Emily enjoyed their mix of Grandma and Papa time and some family fun with me and Dan.

We gambled some, golfed some, and took in a show.  A Cirque Du Soleil show called Love, which is based on The Beatles music, was a sight to see.  That was a highlight for me, Dan, Erin and Emily.

It was good to feel the desert sun on our faces, and it was good to visit and reminisce with my parents.  My mom shared with us her "Shannon Box", where she keeps Shannon memories and mementos.  Some are sad - obituaries, articles written about her posthumously.  And some are happy - photos of Shannon at various stages of development, pictures from earlier Vegas adventures, and a scrapbook thank you from Shannon to Grandma after we took a girl's cross country driving trip.  Chronicled in Shannon's handwriting, there's a memory from each place we stopped, including each hotel key.  So sweet.

As we looked at the photos, it struck me that if we can remember the memory that goes along with the photo and not think of it in context to what happens later, then it brings happiness.  The picture of Shannon at age 3 cutting green beans with Grandma is a happy memory.  It makes me and Grandma smile because Shannon was so intent on helping prepare the beans, but she had no intention of eating them!  A funny Shannon memory.  The fact that she didn't see her 14th birthday shouldn't change that.

So, that's my goal when I look at pictures or think of memories.  Remember the feeling I had at that time.  Remember the moments, not the eventual endgame.

Las Vegas

Sorry, folks, but there's been little time to write.  We are enjoying our Easter weekend here in Las Vegas.  Erin got to bring her buddy Emily, and it's been great fun.  Eighty degree temps, a day by the pool, bowling, many golf cart rides around the neighborhood (including one that took them to Walgreen's on city streets.  Totally illegal!  Erin thought if she got stopped by the cops, she could pass for 16!) a trip to M&M world, a manicure/pedicure, and tonight we are off to a Cirque Du Soleil show down on the strip.

Dan and I have played some golf and played some blackjack.  It's been great to be away and disconnect.  Home tomorrow...