Papa Harkins Update

I am happy to report that Papa Harkins is back in the land of snow... and capable healthcare.  Sorry to all my Florida friends, but the quality of care there leaves a lot to be desired.

Papa suffered an retinal arterial occlusion caused by an episode of atrial fibrillation on the ship.  Afib can make you throw blood clots that settle in your organs.  Losing eyesight in one eye is terrible, but it could have been so much worse.

After a couple of frustrating days of substandard care in Port Canaveral and a less than comfortable flight home, Papa is now at Hennepin County Medical Center under the watchful eye of Dr. Scott Davies... who just happens to be Chuck's longest standing brother-in-law.

Scott has helped assemble a team of docs to treat the cardiac issues, and also attempt an experimental treatment on Papa's loss of sight.  HCMC has a hyperbaric chamber and Papa will now sit in there twice a day, two hours a day, for five days.  It's an effort to improve blood flow in the hopes of regaining some vision.

He's still got some cardiac issues to be resolved and there's no guarantee that his eyesight will return, but from here on out, Papa's getting the best care possible.

Hold a good thought for him as we move forward with treatment over these next few days.

As for Erin, she's doing all right.  Still disappointed, still sad and a bit shaken by all that has happened, but she'll get through it.  She always does.

And me and Dan, we are once again reminded of the grace and goodness of other people.  Those who are there to lift you up and help you move forward when you aren't sure you can.

I'll get a chance to visit my dad in the hospital tomorrow.  Can't wait to see him.

Saturday December 27, 2014

I am tired of looking for silver linings.  Today just sucks and there's no way around it.  Erin is suppose to be on a Disney Cruise today, swimming with the dolphins in the Bahamas.  Instead, she is back home after a long, traumatic day yesterday.

Grandma and Papa Harkins flew with Erin to Orlando Christmas night in preparation for their 13th birthday adventure.  Yesterday morning, they shuttled from Orlando to Port Canaveral and boarded the ship.  After a quick peek around, they headed to get some food.  Upon sitting down at the table, Papa lost sight in one of his eyes.  Just like that.

Off to the ship's doctor who said they needed to disembark and head to the local hospital.  Erin was on the cruise ship for 2 hours, 90 minutes of which was spent in the hospital.  Then, to the local ER for another two hours.  While talking to Erin on the phone, she said, "Mom, out the window of the hospital I can literally see my ship sailing away."  She was on the ship long enough to take 5 pictures with her new camera she bought with her own money.  She showed them to me last night.  There's a really good one of Grandma and Papa at the beginning of their grand adventure...

It was obvious that Papa would be in the hospital and there would be no vacation, so the next goal was to get Erin home.  Nothing else could be done.

On the phone with Delta, one way ticket back to MSP for an unaccompanied minor.  Grandma and Erin cabbed it 45 minutes from Port Canaveral to Orlando, got Erin on a flight and then Grandma got back in the cab and headed the 45 minutes back to the hospital.  Erin sat alone on a plane for three hours and Dan and I were at the gate at MSP to meet her.  She finally cried when she got to us.

The initial diagnosis is that Papa had a stroke to the optic nerve.  Recovery of eyesight is an unknown at this point.  Life altering for he and my mom.  My mom is currently working to get him cleared to fly to Minnesota so he can be seen here in Rochester at Mayo Clinic.  Tests are being done to make sure there aren't other clots or concerns before he can be released from the hospital.

Erin was, of course, a trooper.  She handled it as well as any 13 year old could.  I am so tired of life lessons for Erin and for her to keep having to put things in perspective. She's gotten way too good at saying, "It could be worse."  Guess what?  It could be better, too. How about some unadulterated fun for that kid for once?

She's up this morning, coping, making plans maybe to go to the mall shopping with a friend.  She's resilient.  I know that.  I just worry how many times she can bounce back.

So, we are in Rochester.  My parents are in Florida.  Everyone is scared. Papa's life was altered yesterday. So was Erin's.  Papa and Grandma feel awful.  My heart aches for all of them, and there's nothing I can do or say to make it better.

Christmas Eve

Sleep has not come so easily for me the past few days, so I am the first one awake this Christmas Eve morning.  Well, me and Sylvie.  She has an uncanny ability to hear any sort of movement anywhere in the house and she thinks this is her call to come to the kitchen and ask for food...

Thank goodness for Netflix and HGTV.  They have been my constant companion in the sleepless hours these past few nights.  I'm hopeful that today is a better day.

Yesterday felt like a step backwards.  I think the exhaustion, weaning off the pain meds and the whole surgical procedure finally caught up with me.  Low hemoglobin combined with taking narcotics has not been a great recipe for me.  I might have had a mini-meltdown last night. I'm resigned to the fact that you're probably not going to win mother of the year when the 13 year-old has to tell you it's ok if you skip Christmas.  Thank goodness there was one adult in the room...

Miss Erin has been a trooper.  So has Dan.  I am not a great patient - I sort of want to do everything for myself - and he, ahem, doesn't love playing nurse.  I hate to generalize, but I've done a small straw poll, and the truth is, guys suck at taking care of their sick wives.  The world just functions much better when the roles are reversed.  Dan has been doing it all, though - cooking, cleaning, laundry - and we've managed to laugh a few times at how out-of-balance we all feel when things don't go according to the master plan.

Ah, perspective though.  All things considered, we are doing all right and we are lucky to be where we are this Christmas.  Yesterday's obits in the Rochester paper were sobering reminder of that.  Three people who I knew in my life passed away this week:  the father of a dear high school friend, another acquaintance whom I worked with and occasionally played tennis with, and a high school English teacher of mine.

Each of them dealt with cancer as part of their life's journey.  I have fond memories of these people and the different times in my life that they represent.  Wendy's dad was a bus driver who often drove the basketball bus in my high school years.  Bob was a good guy and a fun tennis opponent when I picked the game up again after taking a few years off to become a mom.  And Mr. Sollien introduced me musical theater.

We read Shakespeare in his class and then watched "modern" adaptations.  Taming of the Shrew led to Kiss Me, Kate and Romeo and Juliet brought us to West Side Story.  One look at the Sharks and the Jets singing and dancing their feelings, and I was hooked.  West Side Story is still my favorite.

I know those families each wake up today to a first.  The first Christmas without a piece of them.  My heart aches for them.

We are doing this "Christmas without" thing for the third time now.  Does it get easier?  Not really.  We still miss Shannon every day and the holidays only bring that into sharp relief.

But time does soften the corners a bit.  We have more life without her now to reminisce about.  I don't know if that's a good thing, but it's the truth.  We find ourselves moving right along, watching Erin grow, getting on with the act of living our lives.  It doesn't hurt to stop and remember from time to time...

I'll be thinking of those families and their firsts, hoping for strength and peace for each of them on this journey.

I'll be remembering Shannon, and another Christmas she missed.

I'll be hoping that my family can nurse me along for another couple of days and that I start to feel like myself again.

I'll be crossing my fingers that Erin still feels the magic of Christmas like a 13 year-old should.

Hold those you cherish close in your heart today, tomorrow and always.

Merry Christmas, everyone.

Home Sweet Home

I am happy to report that we made it home yesterday from the hospital.  I was released yesterday afternoon, and I was able to sleep in my own bed last night.  OK, "sleep" may be a bit of a misnomer, but you know what I mean.  I'd still rather be getting up for pain meds at 4am on Willow Lane than at Methodist Hospital...

I feel a bit like I got hit by a truck this morning, but this is to be expected.  Things will get better in the days ahead.  I've got Dan making me food, Erin keeping me company and a couple of animals for entertainment.

My surgeon stopped by yesterday before I was released to let me know everything went very well with the procedure.  No incision necessary, he was able to do it the easy way.  ("Easy" being a relative term here!)  Now I just need to be gentle with myself for the next six weeks and let things on the inside heal.

Grateful it's done, grateful I'm home, let the healing begin...

Saturday December 20, 2014

Good morning from Rochester Methodist Hospital.  Dan here delivering Starbucks to the patient who is recovering from successful surgery.  Friday was a long day - we checked in at 9:30am for the procedure which did not get underway until about 3:00 pm.  The hysterectomy took a couple hours.  Jen was not delivered to our 5th floor hospital room until after 8pm and she was pretty much out of it for the balance of the night.

Jen is bright-eyed this morning but suffering from nausea and not even close to thinking about food.  The staff will be rounding here in a few minutes and we will learn more.   The hope is we are discharged by mid-day and recovery can continue from Willow Lane.  However, it is possible we may be here another day.  That would suck.  But out of our control.

I am always impressed by medical professionals ability to provide comfort and confidence.  Still, it is impossible to not think about Shannon when walking these halls.

Hope there is something to update before too long.

Thursday December 18, 2014

Sleep has been elusive here at the O'Hara household this week.  No doubt tomorrow's surgery is weighing on all of our minds.

The good news is, I've been productive in those early hours of the morning.  I've got my writing job/consulting work all in order for the next 10 days.  Presents are wrapped and Christmas cards are going in the mail today.  One last trip to the store today and then everything that needed to be done is done.  And, the things I didn't get done this year, well, maybe they didn't need doing...

I'd be lying if I didn't say I was a bit nervous about tomorrow.  I've gotten more anxious as the week has gone on and I've told a few more people that I'll be out for a while - my tennis group, my volleyball team, the guys I teach with at the RAC.  By the way, it is not a real conversation starter when you tell 30-year-old men that you won't be able to teach tennis for a few weeks because you are having a hysterectomy!  Poor guys, they don't know what to say... I did my best to put them at ease...

I'm not really worried about the surgery itself, but the uncertainty is getting to me.  I'm not so good with unknowns, and I won't know what type of procedure I had until I wake up.  That will determine the amount of pain I'll feel and the recovery time that will be needed.

The thought of 6 or 8 weeks without tennis or volleyball or blast class is a huge bummer.  But in the grand scheme things, it's really just a small bump in the road.  We've traversed rockier ground than this and people go through worse things every day...

I know it's for the best.  Short term pain for long term gain.  If I was having any doubts about whether or not I needed this procedure, well, mother nature is sending me one last cruel reminder this week.  Are you kidding me??  I refuse to go to the store and buy more tampons, so I'm scrounging through every purse and bag I own... argh!@#$!

I guess you just have to laugh at the cruel irony of it.  I'm doing my best!

See you on the flip side...

Monday December 15, 2014

We had a productive weekend and things are moving smoothly toward the holidays.  There are a few presents under the tree now (phew!) and Erin and I did a little Christmas baking yesterday.  So, if I'm laid up for a while after Friday, everything will be o.k.

Our event on Saturday was a huge success.    Once again, we are humbled by the support of our town and the hockey community.  The three high school girls teams put on a great event, wearing lime green and supporting the Shannon O'Hara Foundation.  Each girls program - Mayo, Century and JM/Lourdes - made a $500 donation to the foundation.  The new Shannon gear was a huge success and, in total, $4400 was raised.  In one day.  Truly amazing.


The girls that Shannon played with are spread across this city.  That's how youth hockey works - you all play together growing up, and then, come high school, you separate and represent your school.  

As part of the presentation, a dear friend of Shannon's from each team spoke.  Paige, Maddie and Sam shared their memories of playing with Shannon and knowing Shannon as a friend.  It was powerful to see each program represented, and to hear Shannon remembered through the eyes of her peers. 


As we spoke, Dan called up all the girls who ever played with Shannon.  It was poignant for us to see how many girls were teammates of Shannon's.  They are out there, living the dream.  They all know it's what Shannon wanted.  They all remember.


I always come away from a day where people are handing us money feeling a little self conscious about it.  It is a strange thing to ask people to donate to your cause, to this thing that matters so much to you that you want others to be on board, too.

But, luckily, each time we fundraise, someone ends up thanking us.  They feel good remembering and honoring Shannon.  They appreciate the reminder to enjoy the day, to enjoy their kids, to celebrate what's right here, right now, because that's all we know for sure.

What a gift that is to us.  Shannon's wish to make a difference is coming true.

SOF Day at HS Girls Hockey Today! - 12/13/14

Just a friendly reminder that we are having our first Shannon event of the winter season today - SOF Day at HS Girls Hockey.  JM/Lourdes plays Mayo at 1pm followed by Century vs. Austin.  

Dan, Erin and I will be on hand from 1-5pm.  There will be a short presentation between games at around 2:30.  

Lots of cool new Shannon merchandise on sale, so if you are out and about, stop by and pick up a Christmas present or two... looking forward to a great day for the SOF!



Thursday December 11, 2014

I am happy to report that Christmas preparations are now under way at the O'Hara household.  The tree is up, the Christmas card is ready, and I bought baking supplies to make some cookies.  Erin and I even did a little shopping last night.

I've been forced into action over the past few days after purchasing an early Christmas present for myself... I'm getting my very own hysterectomy next Friday!  Woo hoo!  Lucky me!

The past three years have not been kind to my body.  This "disorganized ovulation" began just before we headed to Memphis with Shannon in 2011.  There was the ovary removal due to a cyst and the uterine polyp surgery.  Throw in a little ductal carcinoma in situ (DCIS), lumpectomy and radiation  and it's fair to say my body has been through the ringer.  That doesn't even count the non-estrogen related osteomyelitis that prompted two oral surgeries, five days in the hospital, and three dental implants.  Hey, maybe I could make a "12 days of Christmas" type song...  "On the first day of Christmas, my body gave to me - twelve medical bills..."

This most recent struggle has become a quality of life issue and a treatment issue for preventing a recurrence of DCIS.  The drug I should be taking doesn't play well with my cycle.  Having the hysterectomy will give me better treatment options for preventing breast cancer.

OK, I know this is TMI for most of you... but, it's a reality for me, so I'm sharing here like I always do... sometimes being a woman just sucks.  I certainly didn't think I was having more kids or anything like that, but it's still hard to admit that I'm getting old.  I still think of myself as young-ish, but young people don't have hysterectomies, so I guess I'm not fooling anyone, anymore...

In the long term it's the right thing to do.  My body is tired and I am tired, too.  In the short term, it will be a royal pain.  If all goes smoothly, I'll spend one night in the hospital and then I'll come home to rest.  I'm hopeful I'll be feeling ok by Christmas.  Recovery time means no tennis/volleyball/personal training workouts for six weeks... could be a long January...

So, I've got 8 days to finish what needs to be done before Christmas.

I think I can, I think I can...

Sunday December 7, 2014

My coffee is tasting good this morning as I need a little wake up call after yesterday's whirlwind of activity:  A walk around the reservoir in the morning, a quick drive to South St. Paul to pick Erin up from State Debate, a visit to the inlaws, and an O'Hara family gathering that involved a drag queen...

Let's start from the beginning.  Erin finished off the debate season with the state tournament Friday and Saturday.  What a wonderful experience with a great group of kids and a wonderful advisor, Judge Kevin Lund.  Erin learned about the topics presented, and learned skills of listening, extemporaneous speaking and rebuttals.  She admitted she loves the rebuttals... I mean, what teenager doesn't love to refute the other person's points?!?!

Miss E and her partner, Anna, comported themselves well, getting out of the round robin portion of 60 teams in the Novice division and into the sweet 16 before getting knocked out.  A great experience for sure.  The dynamic duo already plans to be a team again next year.

Our next stop was a visit to Dan's parents in their apartment.  Aging parents is something that many of our peers can relate to.  I'd say Dan's parents also have comported themselves well:  when we arrived yesterday, we found Ed watching women's college basketball.  He'll tune into any game in any sport if it involves Notre Dame!  Tess was off at her friend's apartment, busy playing bridge.  We stopped in and said hello and made a plan for another visit in the near future.

While their time of living independently is coming to an end, it's been a helluva run.  91 and 88 years old.  Amazing.

The last stop of the night was an O'Hara family gathering.  Seven of the nine kids and spouses were there.  Throw Erin and her cousins in the mix, and we were in for a night full of laughter.  There has been a lot of communication between the siblings recently as plans are being made to move Ed and Tess into a senior living facility.  It's a stressful thing, even if it's the right thing.  Last night's gathering provided a chance to be together and forget those worries for a while.  People were in a festive mood and enjoying each other's company.  It's amazing how loud a room of O'Haras can be...

We ended our day with a trip to downtown Minneapolis to take in a holiday show of Miss Richfield 1981.  She is a drag queen with a stand up routine that will make you pee your pants.  Audience participation and equal opportunity offending had us all laughing.  It felt good to just be together and be entertained.  Nothing wrong with a little inappropriate fun...  

So, on we go with December.  18 days until Christmas... still no decorations for tree around here... maybe this will be my week!

Wednesday December 3, 2014

I'm not gonna lie - it's been hard coming back to the cold weather.  It's a good thing our school system here is so good or I might be tempted to up and move...

We are settling back into the home routine, though.  Dan is traveling, Erin is busy every night, and I am here to feed the cat and dog.  By the way, Sunny and Sylvie are more than co-existing these days.  I think Sunny even kind of likes the kitty.  They have developed a new chase game and also a new napping spot.  I came home yesterday to find the two of them sound asleep on our bed together.

I cannot believe it is just 22 days until Christmas.  I don't have any decorations up yet - no tree, no stockings - and I'm having trouble motivating.  Erin wants to decorate, though, so I don't think I'm getting by without it.

It will be a different kind of Christmas as Erin leaves for her 13th birthday trip on Christmas night.  Yes, the little princess is off to warmer climates again - she and Grandma and Papa Harkins are headed on a three day Disney cruise to the Bahamas.  Erin's wish for her birthday trip was to swim with the dolphins, so off to the Bahamas they go.

This will be our third Christmas without Shannon.  That's a shock to the system when I say it out loud.  But, we have lots of opportunities to honor her in the coming days and months.  Shannon events will keep us busy through the middle of February.

We just sent out our first ever fundraising campaign letter.  (If you own a business in Rochester, MN, there's a good chance you are getting one!)  It's our first attempt at a charitable giving campaign.  In a perfect world, we will raise enough money to fund our scholarships for the long term.  In a pipe dream world, we'd have lots and lots of money to donate to brain cancer research.  It's ok to dream...

We also just got in our new merchandise - hoodies, ladies zip up sweatshirts, and sweatpants for the kids.  The stuff all looks really cool.  Erin and I have been drumming up business by wearing our gear around town.  The first chance to purchase these new items will be Saturday, December 13th.  We will be at Graham Arena that day during both high school girls hockey games.  JM/L vs. Mayo at 1pm, followed by Austin vs. Century.  I'm not much of a salesman, but if you are looking for a Christmas gift or two, we've got 'em!  I'll be putting these items on the Shannon O'Hara Foundation website store soon for those of you who can't get to the arena.

So, I have no doubt that December will fly by.  It's state debate this weekend, hockey event next, and then we're just days away from the holiday.  I guess I better go dig out those decorations now before it's too late...

Sunday November 30, 2014

We are back in MN, safe and sound, and we promise not to bitch about the weather... Palm Springs was a wonderful getaway for me, Dan and Erin.  We got to be together, play golf, and enjoy a great break from the routine.

But, I am a little emotional about it all.  I can't shake this feeling that we wouldn't be living this way if Shannon were still here.  Survivor's guilt or feeling selfish or something.

I mean, intellectually, I know that I'm allowed to be happy.  Of course that's what Shannon would want.  But, emotionally it's hard to let myself feel that happiness sometimes.  How do you go on vacation and laugh and act like you don't have a care in the world when you know you are only going to Palm Springs because Shannon is gone?  If Shannon were alive, we would have been in Rochester, watching her play hockey at Graham Arena.  Instead, we were soaking up the sun in the California desert.  How can that make me happy?

I don't even know how to articulate all that I am feeling, but guilt is the word that comes to mind.

Of course, our lives got worse when Shannon passed away.  It crushed a part of me that I will never get back.  But, some things in our lives are better now because of it.  Our relationships with each other have deepened and Dan, Erin and I know that we are closer now than we would have been if... With only one kid, we have the time and money to vacation and do things we wouldn't have if...  We have these deep, meaningful friendships that wouldn't have developed if...

So, I am feeling conflicted.  Grateful for all that I have, and trying to come to terms with the things in my life that are different because Shannon is gone.  I would never, ever say that my life is better, but my relationships are, and living in the moment is a good way to be.  It is hard to reconcile that losing a child made life simpler in many ways.  You know I'd give it all back to have Shannon here with us.

But, that's not an option, dammit.  So, I have to remember to look at life through the lens of what Shannon taught me, and remain open to accepting the gifts she continues to give as we go on, doing the best we can without her.

Thanksgiving

For the first time in our lives, Dan and I chose to travel away from home and family on Thanksgiving. We've been hearing about the snow back home, and we are feeling like we chose the right year to get away...


Palm Springs/Palm Desert is beautiful.  We are staying at a lovely JW Marriott resort thanks to DanO's travels.  Those nights he spends in places like Fargo, ND, Sioux Falls, SD, Grand Rapids, MI earn him platinum elite status.  Those points make this trip possible.  Talk about something for which to be thankful!

We are here with our friends, the Shives family.  This is their Thanksgiving tradition to spend the week here.  This year, they invited us along... or maybe we invited ourselves... either way, the time together with our dear friends is wonderful.  We have been laughing so much it hurts.  

Yesterday, we all played golf - boys in one group, girls in the other.  The weather is a perfect 10 and we are feeling really fortunate.  Being with my pal Kula and seeing Erin interact with her friend Ariana warms my heart.  Erin no longer has a sister to share things with, but she's lucky to have friends to step in and fill the void.


Today, Erin and Ariana will pass on golf to take advantage of some pool time/girl time.  I am going to attempt to play again today, hoping to make a few more pars and a few less 7's.  As Erin would say, that's a first world problem.  Then later this afternoon, we will gather at the Shives condo for a traditional thanksgiving meal.  That qualifies as a pretty good day...    

It is difficult not to think of Shannon today, on this national holiday where we count our blessings.  She continues to be one of mine, even if she's no longer physically present.  She changed me in ways that have enriched my life, and she brought people into my life who have eased my burden.

So, on this day, I am thankful for our family who understand that the rules have changed, and the old way of doing things doesn't always work for us.  We are missing them today, for sure, but happy to be taking care of ourselves and doing something different this year.  

Today I am also thankful for the friends who have become our chosen family.  Not only Tom, Kula, Ariana, and T. Connor, but our network of people in Rochester.  Texts have been coming in this morning from my girlfriends.  How great is that?  There is much to celebrate today.  

Today and every day, we are grateful for those friends who will talk about Shannon.  The people in our life who help us move forward, but who always remember.  

Happy Thanksgiving.

Sunday November 23, 2014

Tonight I'm hanging out with Erin, watching the American Music Awards.  She's rooting for her favorite boy bands (One Direction, 5 Seconds of Summer) and I'm in it for some good music and some time with my girl.  We are singing along whenever possible, and there may even be some dance moves happening...

It's an incredibly close relationship that Erin and I have developed.  We're both grateful for it, and we're both aware that our circumstances made it this way.  If I had two kids to split my time between, it would be different.  That's just a fact.

But, we can't change that and we can make the most of what we have.  So, we make a point to be kind to each other and to have each other's backs.  We root hard for each other and we share an extra little bit of tenderness because the loss of Shannon made the mother/daughter dynamic all that much more poignant.

Now, this doesn't mean that I don't drive her crazy when I ask her repeatedly about how much homework she has.  And, it doesn't mean she doesn't drive me crazy when she procrastinates and makes it so I have to bug her about her homework.  (See, it's her fault...)

Yes, I am still the mom and she is still the teenager and that creates a certain dynamic.  It would be weird if we didn't clash a little bit.  But, she's not mean to me and I'm not irritated by her and it's all pretty dang good.

I still consider myself the mother of two, but there's only one who needs me now.  Luckily, I like her and she likes me.  That eases the burden for both of us.  We are doing our best to enjoy the ride we're on, and we're throwing in a few dance moves when we get the chance...

Wednesday November 19, 2014

So, it's official.  Sylvie the cat loves me... damn.  She likes to be where I am - on my desk, on my computer, on my bed, on my chest... last night I had to kick her out and shut the door because I'd had all the loving I could take...

I can't help but be a little sarcastic about owning a cat.  It's an unexpected turn, but she's here to stay.  She actually loves everyone.  And we love her back.  If Sunny can come to terms with it, I guess I can, too.

This November is acting like January and it's making Dan, Erin and me grateful that we planned a Thanksgiving getaway to warmer climates.  We just have to survive the next 6 days and then we're off to Palm Springs.  So, we don't feel we should bitch about sub-zero windchills...but, this is ridiculous!

Erin's in the midst of a busy week as she preps for a debate competition this weekend.  Dan is traveling, of course, and I am in the process of rolling out our first real fundraising campaign for the Shannon O'Hara Foundation.

I've been feeling conflicted about this.  Asking people for money is way out of my comfort zone.  But, this is the business end of running a foundation.  You have to raise money so you can continue to give away scholarships and help donate to brain cancer research.  That's the deal we made when we started this, so now it's on me to keep pushing forward.

So, with the help of SOF board members/friends, we have crafted a letter, compiled a list of names and addresses, and printed up letterhead.  The campaign will roll out right after Thanksgiving.

Part of me thinks it's easier to raise money one $20 t-shirt at a time, but that's not sustainable.  I don't want to be hauling boxes of t-shirts to Graham Arena when I'm 70!  So, I will set aside my emotions as best I can and think like a business person.  Yet another new skill that I must acquire in the "after".  Fake it 'til you make it, right?

OK, I'm getting the signal that it's time to get off my computer.  There's a creature who needs feeding.  Fancy Feast, anyone??


Sunday November 16, 2014

Some things are always going to be hard.  Like the kind of hard that hurts in your gut.  Watching girls HS hockey for the next couple of years is going to be like that.

Last night, we went to see the Century vs. Mayo girls game.  It would take all my fingers and toes to count the girls on the ice who played with Shannon.  I mean, these are Shannon's line mates now, playing real minutes in a varsity hockey game.  Girls who Shannon was equal to in ability. It's impossible not to project...

We sure miss those parents, too. There were lots of friendly faces in the crowd last night. People we spent weekends with in shitty hotels so we could watch our kids play.  People who rooted as hard for our kid as they did for their own.  We had some good yuks with those people last night, just like the good ol' days...

When we make eye contact with the girls out on the ice, we always get a smile.  They want us to be there.  They love seeing coach Dan there watching them play.  I hope when they look at us, they can see Shannon in their minds.

So, we really have two options - avoid going to the rink so we don't have to feel the pang of loss and sadness and emptiness.  Or, try to hold our chins up and go watch Shannon's friend play, knowing that's what Shannon would want, knowing it's the right thing to do.  Sitting home, avoiding it isn't going to make me feel better.

If I'm being completely honest, we went to the rink because we needed something, too.  We needed that look of acknowledgment from others that they remember.  That Shannon isn't forgotten.  That they know she should be out there.

It's a dance we will always have to do.  Giving and taking.  Knowing we have to honor Shannon and support her friends, but also needing to still feel included.  Knowing we want to see those girls grow and play and do the thing they all loved to do together, but also needing to see the hole that Shannon left.

I guess, going to the rink makes us feel -  we feel some happiness, some sadness, some support, some loneliness.  Truth is, we have to go.  We walk past her jersey and her memorial display and we can feel her there.  It's this mixture of pain and joy that's hard to articulate.  But it's real.

"The purpose of life is not to be happy.  It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well." - Ralph Waldo Emerson

Sunday November 9, 2014

We are home this morning and prepping for the first snowfall of the season.  Erin is preparing by hibernating in her bed as long as possible.  I am preparing by going to the grocery store.  Dan is preparing by playing one more round of golf...

We've had a great weekend together.  Three days at the volleyball tournament meant lots of time together for our threesome.  While the Spartans didn't finished quite has they had hoped, the experience of watching those girls compete was wonderful.  Dan and I reminded Erin that it's pretty special to be a part of a successful program.  In her three years of playing, Erin has seen Mayo get to three section finals and two state tournaments.  She hopes she's a part of that some day.

After the tournament finished yesterday, we were able to attend a dedication ceremony for the late Henry Mackaman. Henry, is the son of Erin's cousin Maggie's husband, Doug.  (Got that??)  Henry was a student at UW- Madison when he contracted meningitis.  He passed away in April of 2013 at the age of 21.

We spent a little time getting to know Henry at family events, including Thanksgiving in that last year of Shannon's life.  I have a grainy, dimly lit photograph of Shannon and Henry on that day, sitting on a bench together, just being kids.

Yesterday, Henry's family and friends gathered at the Mississippi River to unveil a memorial bench erected in his honor.  It's a beautiful spot in St. Paul, and the sun shone down as Doug spoke so eloquently of his son.  He spoke of learning to live in the after.  He spoke of viewing everything moving forward through the lens of what has happened.  He spoke about us - me, Dan and Erin - and how we are there with him in this awful club.  ( I think he referred to it as the fu&*ed over club... I kind of like that :)  We shared some raw moments with Doug and Maggie and Henry's brother Owen when we traveled with them in London and Paris a couple of summers ago.  We have this bond with them now that none of us would ever wish for, but it was thrust upon us.

The truth is, all of us view the world through our previous life experiences.  Everyone can only draw from their own experience.  We don't know what we don't know, and when a major life event - good or bad - changes the way we see things, we can never put that genie back in the bottle.  When that life changing experience is the loss of a child, it is sometimes hard to come to peace with this new world view.  You'd give anything to not have it be this way.  And yet, here you are.  So, you find a way...

Doug spoke about so many things that hit close to home for us three.  We were glad we could be there to support and honor and remember.  Others have done that with us in our journey forward, and we know that sometimes, just being present is all you can do.  Henry would have turned 23 tomorrow.

Thursday November 6, 2014

Some positive updates from the O'Hara household:

I had a clear mammogram this week.  Always happy to click another one of those off.  Almost two years have passed now since my lumpectomy.  This is a good thing.

I am happy to report that Sylvie has figured out the whole litter box thing.  Phew.  And Sunny and Sylvie are making peace.  Here's how I found them lying this afternoon:


(Just to be clear, I am not a "cat person".  I am a dog person who owns a cat...)

Today, Erin and I are playing hooky and going to the State Volleyball Tournament to watch Mayo play.  It's been a great season and Erin has enjoyed the ride as the B squad practiced with the varsity kids throughout the year.  Should be a fun day and we're hoping the Spartans can pull an upset today against Eden Prairie.

Go Spartans!

Monday November 3, 2014

Our news feeds this weekend were full of stories about brain tumors and what a cruel fate it is.

The story of Brittany Maynard, the young lady who chose to end her life yesterday under Oregon's die with dignity law has been in the news. She was a recurrent GBM patient, and she knew that her tumor growing again was going to mean an awful end.  She made a different choice, to go on her own terms.

I'm not hear to preach, but I can speak from experience.  Watching Shannon's brain tumor take control over the last three weeks of her life, I can tell you that no one wants to die that way.  Living like that isn't living anyway...

The story that hit even closer to home, though, was that of Lauren Hill.  If you watched any news yesterday, you probably saw her story - a college freshman who was diagnosed with DIPG and wanted to play one more basketball game.  Her college and the NCAA made it happen.  She scored 4 points yesterday in front of 10,000 fans.  

Watching the video clips, I couldn't help but think of Shannon.  Lauren's face is puffy from the steroids.  Her right side is failing her.  Her hearing and vision is a challenge.  She is going to die from this terrible disease very soon, and she knows it.  She's doing what she can to inspire others.  I knew a kid like that once...

I was already thinking about Shannon earlier yesterday.  We went to church and it was All Souls Day - a day of prayer for those who have died.  We did a processional into the church to start mass, carrying candles in remembrance of those we had lost.  Much of the music yesterday were songs that we chose for Shannon's funeral.

I'll always have these touchstones in my life.  Any time someone offers a prayer for the deceased.  Any time I hear about someone with a brain tumor.  Any time a child shows bravery and courage.  Those are all good reasons to stop and think about my sweet girl.

These stories this weekend are also a reminder to live your life the way that you want.  Be purposeful,  because who knows what lies ahead.  You can't control what happens to you while you are here on earth, but you can control your attitude.  I learned that from Shannon, and I try to remember it every day.

"Oh, my friend it's not what they take away from you that counts.  It's what you do with what you have left." - Hubert Humphrey  

Halloween

Social media is all abuzz today with photos of people in costume.  Halloween on a Friday is bringing out the crazy in all of us.  I am dressed today as a tired, middle-aged midwesterner... oh wait, I'm that every day...

I can't help but think of those days when the kids would get so amped up to go out trick-or-treating.  What's better than dressing up in costume and having people give you candy? Thought I'd post a little throwback photo from 2004, also known as the year of the elephant... and the cat...


Smiley was smiley even way back then.  Loved those days.  

Today, Erin is dressed as a baby.  That means she went to high school in footie pajamas, carrying a blanket and a stuffed animal, with a pacifier in her mouth.  Now that reminded me of Shannon, who wouldn't give up her nuk until she was 4 1/2. 

Tonight Erin is helping her friend Emily take Em's little sister trick-or-treating.  This is the best way to not really be trick-or-treating, but still get to reap the rewards.  She's no dummy...  

Happy Halloween.

Tuesday October 28, 2014

Ahh, sometimes life is crazy and things you don't expect happen.  As I write, our kitten is on my lap.

Yes, it seems that we are now the proud (?) owners of a malnourished 5-week-old alley cat with an upper respiratory infection.  WTF??

Here's the story:  while playing golf on Sunday, Dan came across an abandoned kitty, full of burrs, sitting in the parking lot, shivering.  What to do?  Well, bring it home for Erin, of course.  Erin named her Sylvie.

And just like that, we became cat owners.  After a text to the vet, we were off to PetSmart for some cat shopping.  $121 later, we were ready to feed and bathe our kitty.  Did you know you can buy kitten milk replacement for those kittens whose mothers abandoned them?  Me neither! Apparently you also need a scratching post and a litter box from the Martha Stewart Collection and a food dish that says "Catch of the Day".

Sunny is a little skeptical of this interloper, but she's doing her best to be tolerant... Sylvie already thinks Sunny is the cat's meow... let's just say it's a developing relationship.  I hope Sunny doesn't mistake Sylvie for a chipmunk.  She's killed a couple of those here recently.  It's going to be fine, right?


I love dogs, but I don't do cats.  At least, I never have.  But what do you do with an abandoned kitty once you bring it home?  It's all over, right?  I mean, we're invested now...  Erin's wanted a second pet around the house, so here we go.

Since we are apparently keeping this cat, yesterday it was off to the vet for eye drops and antibiotics to help Sylvie fight off the cold she developed while sleeping outside for the first 5 weeks of her life.  $156 later, Sylvie is on the mend.  She is a sweet kitty and yes, Dan can say he saved a life.

So, I rushed home from playing tennis today to feed the cat and give her meds.  She's currently in the bathroom with the shower running.  A little kitty steam room to try and clear her respiratory system.  A couple of times a day.  Uff da, I fear I have fallen down the rabbit hole... I sent a picture of Sylvie via text to Erin at school.  Yes, I am turning into that lady, the one who takes pictures of her cat.  For example:


So, a new development at Casa O'Hara to say the least.  People tell me cats are easy and fun to have around the house.  I am taking care of nursing Sylvie to health, but I am reserving judgement.  At least until she proves that she can learn to poop in the litter box.  Then, we can be friends... 

Sunday October 26, 2014

Another beautiful fall day is upon us.  The colors have been so vivid this fall that you can't help but take notice.  The amazing beauty around us reminds us to take stock of all that is good right here, right now.

We took full advantage of our first free Saturday in a long time yesterday by catching up with the Minny Os.  Watching the Gopher football game on TV, and walking along the Mississippi river in St. Paul.  The impromptu gathering managed to bring together aunts, uncles, cousins, and Grandma and Grandpa O.  There is no such thing as a small gathering!  Ed will turn 91 this week, so it was a good excuse to get together.


Erin enjoyed talking with her cousins - one in college,  one post college, and one young mother.  I think she strives to be like each of them some day.  A big bonus for Erin was some time to play with cousin Ollie (Erin's first cousin once-removed... I have to look that up every time!)  Ollie is a good natured one year old - curious and smiley.  If he can tolerate the noise level of an O'Hara gathering, he's in good shape.

So, a little time to reconnect with family was good for all of us.  Warm temps and sunshine didn't hurt either.  Life is good.







Thursday October 23, 2014

Dan and I awoke yesterday in two different beds in two different cities, each having a version of the same dream.  Shannon playing hockey.  Dan could see her smiling through her facemask as he skated over to her on the bench.  She was in her happy place.

My dream was a memory of the last game Shannon played.  The Rebels were playing at Waseca just days before we were leaving for Memphis to head to St. Jude.  Shannon scored her only goal of that season spent playing with a brain tumor.  Late in the game, fatigued and probably feeling the effects on her balance, Shannon got run over by the biggest girl on the ice.  She got up smiling and after the game, her revisionist history turned the story into how she took the other girl down...

It's no surprise that these memories of Shannon are with us this week.  On Monday, Dan and I returned to Graham Arena for our first visit of the season.  The HS Girls Hockey season is beginning, and we are making the rounds, talking to each team about the foundation and handing out scholarship applications to this year's senior class.

We stopped to take a look at Shannon's display case.  Her jersey, her favorite stocking cap, those very skates she was wearing that night in Waseca.  We looked at the team picture of those Rebels, and then saw many of them sitting before us, now ready to play high school hockey.  Damn, they are growing up.  Over the next four years, every kid that played with Shannon will work their way through the high school programs.

So, we've talked to two girl's teams this week and will do a third next week as well.  After that, it will be the HS Boys turn.  It is important to have their support as we continue to work towards funding the scholarships in perpetuity.  We've got our first fundraising event set (Dec. 13th) and new Shannon gear is on the way.  (We're excited about the new hoodies that Erin helped design!)

So, we continue the work.  Hockey season is ahead.  It's good and hard and meaningful and painful.  Tears come to the surface with the pain of what Shannon never got the chance to do.  It's easy to feel the empty space where she should be when we are at the rink.  

Standing before these teams, our message is simple: we wish them luck and reminded them to enjoy every minute of it.  Work hard, be a good teammate, be a good friend.  In Shannon's world, they are living the dream.

Sunday October 19, 2014

We made the most of our weekend at home.  A couple of sleepovers, laundry, yard work, grocery shopping (why do I need to go to the grocery store EVERY SINGLE DAY??), and the best part of the weekend -  several hours spent watching volleyball.


Erin's season, which started back on August 11th, came to a close on Saturday.  A two day tournament meant Erin played 11 volleyball games over the course of 24 hours.  She estimated she set some 500 times over the weekend.  No wonder she's sore.

I was talking to another mom about crazy sports parents and misplaced priorities and all the anxiety we create for ourselves.  It's good to remember that it can just be fun.

We can just enjoy watching our kid - watching her try her hardest, watching her compete.  Sometimes she's a rockstar, sometimes she makes mistakes, sometimes they win, sometimes they lose... and we can remember it's all good.  We are lucky to be able to sit in the stands and watch our girl do something she loves.  That's the whole point.  In the grand scheme of things, that's what matters.

So here's my soapbox for today:  watch your kids play.  Don't yell at them.  Don't yell at other people's kids.  Just cheer for all of them and hug them afterwards, no matter what.  Life is short. Enjoy the moments.

Monday October 13, 2014

It is a rainy Monday night in SE Minnesota and I am sitting in the dark listening to Jackson Browne.  Before you have me committed, let me tell you I am feeling good about feeling sad.

I downloaded JB's 1974 release Late For the Sky from ITunes tonight.  I haven't listened to it in order like we used to in years.  It brings it all back for me.  I grew up the youngest of 9.  So my siblings music was my music.  Jackson Browne's The Pretender was one of my very first self-funded albums. There were always major skirmishes around the O'Hara home when a new scratch created a skip in the best song.

It is impossible to not be reflective about life when it is just you and your thoughts and the music.  For me, all song lyrics point to Shannon.  It is has been months since I have allowed myself some space to cry.

The instant-gratification, electronic input overload we inflict upon ourselves on a daily basis makes it incredibly difficult to create space to think, cry, meditate.  I need to do it more.  It feel so good to just slow down and spend some time with your thoughts.

I have been running like a crazy man chasing down business.  This week I believe I will spend every night in my own bed.  What a concept.  So instead of packing up this Monday night and making sure my work stuff is together for another business trip I am chilling in the dark listening to tunes.  (Completely bored by MNF Niners-Rams.)

So here it is; Shannon and Erin are everywhere in our lives and always will be.  Erin happens to be doing it in front of our eyes, Shannon lives only as a memory.

We are loving watching sweet Ms E grow up (a full-time gig in itself) - but impossibly empty/dark/pissed about the void in her life.  She should have a big sister to argue with about scratched albums.   We will have to live this way forever.  So that kind of sucks.  Not exactly "breaking news".  Acceptance comes in waves.

So, feeling a little sorry for myself tonight.  Always feels better to share your inner-most fears and sorrows.  They say sharing it cuts it in half.  I wonder if sharing it with a couple hundred bloggers cuts it even more.  I'm hoping so.

Time for bed.  One more pass through a favorite (All-time Top 5 for me) For a Dancer;

Just do the steps that you've been shown
By everyone you've ever known
Until the dance becomes your very own
No matter how close to yours
Another's steps have grown
In the end there is one dance you'll do alone

Thursday October 9, 2014

The moon has been ever present these past few days.  Bright and full and visible in the morning and at night.  That full moon always leads us back to our last days with Shannon.  Those days when she was losing her battle, when we were making plans for how to celebrate her life and how to honor her wishes.

Shannon made it clear to us that she wanted to matter.  She wanted her life to make a difference while she was here, and after she was gone.  She told us so.  We went to St. Jude so she could be a part of the research.

In those last days of her life, as the moon grew full, we made plans to donate Shannon's tumor cells.  Just hours after she passed away, her tumor cells were harvested by Mayo Clinic pathology. Those cells were sent to Memphis, where they arrived at St. Jude just 24 hours after Shannon had passed away.   Dr. Wetmore was there to start the process of nurturing and growing these cells.  We didn't know where that would take us...

This week, it took us to a lab at the Mayo Clinic.  Upon Shannon's passing, a research group at Mayo Clinic decided to focus a part of their research on DIPG tumors.  Shannon's funeral had a profound effect on Dr. Richard Vile, a PhD in molecular medicine at Mayo, and his wife, Memy, who also works in research.  There's some cosmic karma at work here.  Dr. Vile and his family are acquaintances of mine through my years of teaching tennis.  The fact that they attended the funeral, and after that experience, decided to work on pediatric brain tumors is nothing short of amazing to us.

Dr. Vile's research is in experimental immunotherapies and vaccines to treat cancerous tumors.  They are looking for a systemic treatment option.  Dr. Vile requested and received some of Shannon's tumor cells from Dr. Wetmore at St. Jude.  Shannon's cells actually became a part of the research she inspired.

So, here we are, two years into their research, and the first paper has been published.  We wanted to hear all about it, so Dan Erin and I paid a visit to the research team this week to learn more.  We met the team, and we saw the lab.  They told us that Shannon's cells continue to grow and, in theory, should live on forever.  Live tumor cells are key to the research.  The results so far have been promising, and they are hoping for a $2 million grant to take this research to the next level.

The paper they published in the American Society of Gene and Cell Therapy is way over my head, but I asked Dr. Vile for a layman's explanation of what the research has shown so far.

Essentially, we have found that a tumor growing in the brain acquires an identity which is rather different to that which it has when it is removed from the local environment of the brain. Thus, when we look at brain cancer cells in the tissue culture dish, they express a different profile of proteins than that profile which is expressed in situ in the brain.

This is important (we think) because the profile of antigens that a tumor expresses in the brain is the critical one. It is this profile which forms the basis of therapy targets - such as drugs, immune therapies and so on. So, if therapies are designed based on the profile of proteins seen only when the tumor cells are studies in tissue culture, we may miss some important targets for drug development. 

In Shannon's paper, we have identified some proteins which are expressed on tumor cells only when growing in the brain, and not when the cells grow in culture. We have shown that the local brain cells (macrophages, monocytes) impose this pattern of protein expression on the tumor cells. Therefore, this manuscript raises a new therapeutic approach to target these new, brain expressed proteins on tumor cells - which otherwise would not be considered as drug targets. Finally, we show that by targeting these new proteins we could clear brain tumours from mice.

So, we believe that Shannon's cells are a critical tool here - in culture they show us a certain defensive look as it were; but when we grow them in the brain, they call an audible at the line of scrimmage, and show a very different look (I apologize that I do not know the equivalent hockey terminology). We need to understand and read the defensive shift and target that specific defense with novel therapies.


The one part of the paper I did understand was the acknowledgements.  "This work was inspired by and dedicated to Shannon O'Hara."   

Our visit to the lab gave us a chance to thank these scientists for the work they are doing, to humanize their efforts, to put a face on this painstaking, difficult work.  It was an emotional connection for all of us. Dr. Vile and the research team thanked us for precious gift from Shannon.

That full moon in the sky reminds us of the end, but it also reminds us she's still here in so many ways.  We do our best to carry on your legacy, sweet girl, just as you hoped we would.

Monday October 6, 2014

I'm going to have to fight back from a crappy start to my Monday:  sent out a newsletter with typos in it, sent my daughter off to school coughing like a chain smoker, and I'm looking at the to do list on my desk and feeling overwhelmed... One step at a time, right?  Just check one thing off, then go to the next.  Not my strong suit...

We braved the cold this weekend and participated in the Brains Together for a Cure walk.  It was wonderful to have family and friends come out to support us and remember Shannon.  Seeing her face in the display of those who have lost their battles and those who are still fighting brought me to tears.

It's hard to believe that three years ago she came to this event.  Some of those same people who celebrated with Shannon in 2011 came out to honor Shannon this past Saturday.  It was quite a crew:


We walked and talked and then came back to our house for some of Dan's homemade chili and talked some more.  It felt really good to have family close.  When things get going at hyper speed and it feels like Shannon is getting further away, it's nice to spend time with people who will never forget.

The only one missing was Erin.  She had other important things on her schedule - taking part in her first high school debate competition.  Erin and her partner, Anna, are hilarious together.  They couldn't be more opposite in appearance - Anna being 6 feet tall and blonde - but together they make one heck of a team when it comes to arguing!  They were pleased with their results, winning 3 of their 4 debates, and enjoyed the intense experience.  The only thing they didn't love was having to dress like old ladies (Erin's words):


So, one week ends and another one begins.  Exciting things are ahead this week.  Monday got off to a bad start, but it's not going to sink me.  Onward...

Friday October 3, 2014


Last night we watched Erin play volleyball against cross-town rival, John Marshall.  Grandma Harkins is here for a visit and got to see Erin play.  Grandma was a little sentimental about being back in the old JM Gymnasium - she spent many a night there watching me play basketball... about a hundred years ago.

The JM team was having Teacher Appreciation night.  Each girl on the varsity and JV had their favorite teacher by their side and said a few words about them.  A couple of my former classmates were there being honored, and one of my favorite teachers was there, too.  My 9th grade English teacher was being honored by one of her current students.  I got to say hello and we talked for a bit. She knew about Shannon and wanted to know more. 

I am happy to say the Mayo Spartans had a clean sweep last night.  That little 9th grader I once was could never imagine that she would grow up to root for the Mayo Spartans.  Having kids changes everything...

It is cold and windy here this morning as I write.  I am hoping the weather will take a turn for the better before tomorrow's Brains Together For A Cure walk.  We will be out there either way.  Grandma is here for the walk and we have brothers and sisters and cousins coming to walk with us, too.

Erin will not be with us this year.  She is getting a chance to be in a debate competition with the Mayo Debate team tomorrow.  We wish Miss E could be with us, but she's her own person now.  I am learning quickly that scheduling anything for a high schooler is a bad idea.  Inevitably, they have other plans. 

This week, I've been thinking back to that first Brains Together walk we did.  2011.  Shannon came directly from hockey tryouts to be a part of the event.  We were all wearing lime green shirts that said "Shannon the Cannon" on the front.  Shannon was honored and embarrassed all at the same time.  We were surrounded by so many family and friends who were watching Shannon battle so bravely.  We hoped we'd wear those every year and we hoped Shannon would be with us, still fighting.  

She's no longer here, but we are still fighting.  Still fighting to honor her.  Still fighting to raise money and raise awareness of the need for research.  Still fighting to keep her with us in spirit.    

I've had some lovely interactions with people this week.  People who have felt my angst in recent days, and offered an encouraging word.  The kindness of others continues to amaze me.  And buoy me.  It's ok that I don't have all the answers.  It's ok that I'm sad and conflicted.  The grief of losing a child doesn't end.  That's ok, too.  Feeling the pang of missing her is real and I like that she's on my mind.  

Under my layers and layers of clothes tomorrow, I might even break out my Shannon the Cannon t-shirt...

 

Tuesday September 30, 2014

After a nice quiet weekend at home, it's time to crank up the gerbil wheel again... this week involves working my two jobs, Dan is traveling throughout Minnesota, and Miss Erin has two volleyball games, confirmation, and a debate competition.  Oh yeah, and school.  Family and friends coming to town this week and it sounds like we will have a nice group for the Brains Together For A Cure walk on Saturday.  Cross your fingers for decent weather.

I wonder sometimes about this blog... what is the point of it now, anyway?  Am I just being self serving by continuing to write about my life and my family?  Does anyone really care?  Isn't it time I just moved on?

These questions rattle around in my head a lot lately.  One of the things I liked best about getting a writing job is that I get to write a little bit about something other than myself.  And yet, here I am, continuing to write about my favorite subject... me!

But, we got stopped at church on Sunday by someone who has been touched by our writing.  I guess that's the point, isn't it?  It helps me and if it can help others along the way, then the blog - and the book - have a purpose.  So, onward we go...

I've been thinking about the book again lately, too.  A year ago we were in the middle of a promotional tour, doing events and sharing our story.  Now, it's just out there, available if someone stumbles across it... It's a strange feeling to have this big accomplishment of writing a book, and then it's kind of over.  Maybe I was hoping for more.  Maybe that's why authors don't write just one book.  Maybe there's something more that will come of it some day.  Maybe I should just be content...

I think secretly I long for Shannon's story to be an active, living thing.  It felt that way as we shared the book and shared our story last year.  When we were telling our story to others, Shannon was alive in it.  We could feel her there.  Now, it's mostly memories bouncing around in my head, and that's harder.

But, we will start to actively honor her again this weekend at the Brains Together For A Cure walk.  We will remember her spirit and her desire to make a difference in this world.  Then, before you know it, it will be hockey season and we will be at the rink, sharing our story and saying her name.  It's always good to hear it out loud...

Thursday September 25, 2014

Some days you're the bug and some days you're the windshield... I'm having a windshield kind of week.  Nothing major, just the little things that add up to life getting the best of me from time to time.

The little things will pass, and I keep reminding myself that they are little things.  Why is it so easy to forget that sometimes?  In some ways, reminding myself not to sweat the small stuff is a reminder of the big stuff.  And, if I'm being honest, it's difficult to think about the big stuff in my life.

I have been busy working on some volunteer efforts - organizing the upcoming Mayo Volleyball Invitational, working of stuff for the Shannon O'Hara Foundation, and prepping for the upcoming Brains Together For A Cure Walk.  (Shameless plug - come join team Shannon on Oct. 4th if you can.  Wear your Shannon shirt.  Register here.)

I have also been busy propping up Erin, who has had a terrible cold, but refuses to miss any of her activities.  I think she got a double dose of stubbornness from me and Dan.  I think it will serve her well, but sometimes it pisses her mom off!

I have had some time around my house this week as I work on these projects.  It's so easy to just get going and go full speed ahead and feel like life is normal and forget who I am and where I've been.  But it doesn't take much to stop me in my tracks and remind me.  Yesterday, it was a picture of Shannon.  It had fallen over on a shelf, and when I went to set it back up, I got lost in those eyes.  How long has it been?  I had to stop and count the months... 32...

I hate that feeling I get when I think that I almost forgot.  I don't know how to explain it exactly.  Life just goes on and I can go longer periods of time without her being ever present in my mind.  That should be a good thing, right?  But it sure doesn't feel good.  And yet, I don't want to live "in it" each and every moment of each and every day.  It is forever going to be a conflict for me...

I love that life is going on for us, but I hate that it is going so fast.  Erin entering high school has seemed to accelerate things.  I don't like the feeling of getting further away from Shannon.  It is hard to be covering territory now that she never got to discover.  It is harder to stay connected to her when we don't have a reference point for her.  "Remember when Shannon went through this" doesn't work any more.  It's all happening so fast now...

One of the things I love about my new car is having satellite radio.  Yes, I have been jamming with Erin to Hits 1.  We have our own little dance party in the car.  My other go-to stations include Broadway Showtunes, of course, and  80's on 8.  That one is a throw back to my own high school years.  I mean, what's wrong with a little Culture Club and Duran Duran now and then?  I can put myself right back there and remember those days.  Everybody remembers their own high school experience.  I'm still coming to terms with the fact that Shannon didn't get there.

Don't get me wrong, watching Erin grow and thrive and struggle and persevere brings me great joy.  And some sadness.  It's not fair to Erin and frankly, it's not fair to me.  But, that's how it is and we have to just do the best we can.

So, it's been a week.  It will end, and another one will begin.  Always a chance to do better, feel better, cope better.  Always.

"The depth of the feeling continued to surprise and threaten me, but each time it hit again and I bore it... I would discover that it hadn't washed me away." - Anne Lamott, Traveling Mercies:  Some Thoughts on Faith

Sunday September 21, 2014

We have survived another week of high school, including the homecoming festivities the last few days.  

All the events of the week culminated with the "big event" - the homecoming dance last night.  Preparation for the dance began around 4pm at our house.  It involved curling irons and make up and tape to make sure the dress stayed on.  Luckily, it also involved friends, as Erin's mother is of no help in the hair and makeup department.


So, the plan was for 6 "couples" - just friends going together - to arrive at our house at 6:30 for group pictures in our beautiful back yard.  Not only did those kids and their parents arrive at 6:30, so did a severe thunderstorm.  Ahh, the best laid plans...

We just had to roll with it and cram everyone into our garage and then down to the basement for some photos.  We did the best we could.



After pictures it was off to dinner - at Noodles & Company.  Very appropriate for a group of freshman who still need their parents to drive them!  Then, on to the dance.  Erin has a great group of friends and it was kind of fun to meet all the parents and get to know each other a bit.  I think the parents were just as nervous as the kids.  Dan and I, of course, were cool as could be... 

Luckily for us, Erin is so comfortable in her own skin.  That's more than Dan or I could say at that age.  She organized the group, included everyone, and even called Noodles & Company to warn them that they were coming.  She's a take charge kind of kid, with a gentle soul.  We think that's pretty cool.

Erin and her friend Liam had a good time together.  They were still talking and laughing when I picked the up from the dance, which they said was really fun.


So, another marker in time comes and goes.  Life experience helps Erin keep things in perspective, no doubt.  It helps her cope and it helps her remember to enjoy each experience she gets to have.  Shannon never made it to Homecoming, but in some ways, she helped her sister get there...  

Wednesday September 17, 2014

Let's just say, I am happy I have a new car because I am spending a lot of time in it!  The high schooler's schedule is keeping us on the run.

Erin has school, volleyball, debate team and confirmation.  We haven't managed to fit piano into the schedule yet, but she wants to do that, too.

That list doesn't include the social agenda:  volunteering, surprise birthday parties, and this week - homecoming.  Friday will bring the homecoming parade and football game, and Saturday, after an all day volleyball tournament, the homecoming dance.  Yes, Erin is going.  With a boy.  As friends.  That's all I'm allowed to say here in the blog...

Seriously, though,  Erin has a great group of friends who are all going to their first high school dance.  Some have dates, some don't.  Erin is playing social director and trying to make sure everyone is included.  It's pretty cool to see.  (As an aside, I never went to homecoming.  In those days, you only went if you had a date.  Nobody asked me.  I was a shy nerd back then.  I think I've almost grown out of it...)

I can't help but wonder if Erin can keep up this pace.  It seems unsustainable to me and Dan.  As she reminds us often, though, we are old.  We had a funny exchange with her in the car last week.  On that particular day, I had taken her to school, then returned to Mayo HS at the end of volleyball practice to bring her dinner so she could stay at school and do homework before debate team practice.  At the end of debate, Dan and I picked her up and took her to a friends surprise 16th birthday party.  She returned home at 10 pm - on a school night! - driven by a friend who has a driver's license.

Dan said to E, "I'm exhausted just trying to keep up with you, I can't imagine you it feels to be you."  Erin looked at us, and with a big smile said, "It's exhilarating!"

Oh, to be young and have the world by the tail...

So, the crazy schedule continues - last night it was a volleyball home game with a big win over rival Owatonna.  Tonight it's volleyball practice and then confirmation.  Tomorrow Erin is off to Austin after school for another volleyball game.   Friday, the homecoming weekend will commence.

I just got to thinking, I haven't mentioned homework once in this post.  I assume Miss E is managing to keep up with her schoolwork, too.  I should probably check with her on that...

Sunday September 14, 2014

I am writing this morning from sunny So Cal.  I could post a bunch of photos - me at Newport Beach, me at Laguna Beach  - but that seems cruel when there are frost warnings at home.  Dan and Erin didn't get to come on this trip, so I don't want to rub it in...

I came to Irvine for my cousin Alli's wedding.  It has been a wonderful chance for me to see my aunts and uncles.  My moms brothers - all 8 of them - were a big part of my life growing up.  Time passes and some things are forgotten, but time together leads to the telling of stories and that helps jog the memory.

My mom and I are both here solo, so it's been a nice little mother/daughter getaway as well.  It's not often that we get time together without others and their needs as a part of the program. (Women, you know what I'm talking about!)  So, we've been soaking up sun and time together.

My uncle J.J., the father of the bride, gave a beautiful toast last night.  He talked about how children change our view of what matters in this world.  He talked about dreams coming true, and, how kids are proof of that.  He was beaming with pride, walking his daughter down the aisle.

Weddings, family, dreams... 

This is just another one of those experiences that won't ever be the same.  Life events are more poignant now.  No way around that fact.  But, I'm still learning how to be in my new life.  It feels like forever without Shannon, and yet, I'm still discovering this new version of myself.  Every life event is a chance to grow, to find my equilibrium.  It feels good to acknowledge that I'm going to miss Shannon forever, and some times it will be brought into sharp relief.  Hanging with my extended family makes me think about my own family.  But, it also feels good to know that I can enjoy these things, too.  The loss of Shannon hasn't destroyed me.  I'm still standing.

But, don't get me wrong, this has been a wonderful weekend for me.  Lots of laughs and lots of connections with people I love.  Weddings, family and dreams are all good things.  And, a couple of trips to the beach didn't hurt either...

20 Years


Today is our wedding anniversary.  20 years ago, this engagement photo announced that Dan and I would join together and be a family.  I wish I could tell those young lovebirds a thing or two about what lay ahead for them.

I could tell them that marriage will be hard.  Nobody knows this when they begin.  I could tell them that they will have to watch each other struggle, and wait for a chance to help.  I could tell them that sometimes they will drive each other crazy.  I could tell them that some lessons are learned the hard way, but that the struggles are worth it.  I could tell them that the birth of children will change them forever.  I could warn them...

But, maybe ignorance is bliss.  Maybe you learn what you're suppose to know when you're suppose to know it.  Those two young people didn't know much, so they jumped right in.  Thank goodness.

The trick is to continue to grow together and not grow apart.  Some of life you just have to figure out along the way.  We're older and wiser now, with a lot more scar tissue.  But, we still love being together.  We laugh.  We laugh a lot.  Even after what we've been through, we manage to find happiness and joy along the way.  We have a special tenderness between us now.  We've earned it.

Happy 20th Anniversary, Dan.  The journey continues...

Thursday September 4, 2014

So, my first two days of high school have gone well... oh, wait, this is not about me... As I was saying, Erin's first two days of high school have gone well.  She is definitely ready for more responsibility and independence.  And I am ready to give it to her.  I think...

I still catch myself wanting to step into places where I am no longer needed.  Erin is very gentle with me when she reminds me to butt out.  Fly birdie, fly...

Miss E likes her teachers and is enjoying the fact that older kids are mixed right into her classes.  It will be a good course load for her with Honors options in 4 of her 6 classes.  Add volleyball games twice a week, practice the other three days and confirmation every other Wednesday and, let's just say, we're going to be busy.

But, busy is good.  It means that we are moving, and hopefully, that means moving forward. Everything in Erin's life from here on out is new to us.  I have really been feeling this, deeply.  I'm doing my best to cherish it for what is, not worry about what will be, and not lament what never was.  We've got a lot of positives in our lives.  I will try to keep my focus on that.

There is so much to be gained if you can live in the present.  I know this, and yet it's a constant struggle for me.  Why?  I don't know.  I still catch myself projecting too far down the road, wondering about the what ifs.  I have to remind myself to just stay here, be present.  This is a lesson I seem to have to learn over and over again.  I can very easily get sucked in to feeling the weight of the past and the fear of the future.

I guess I am recognizing that it's something I've lost along the way - that feeling that I can control things, that preparation will make everything right.  Somehow, I could trick myself into believing that if I just do a really good job of worrying about everything, then everything will turn out ok in the end.  Truth is, I never did have control of what will be.  I was just fooling myself...

So, I take a step back and remind myself to just be present.  Erin is off to day 3 of high school.  That is good.  We will tackle what's right here in front of us, then go to bed and get up tomorrow to do it all again.  One day at a time.  That, my friends, is life.

"Remember then:  there is only one time that is important - now!  It is the most important time because it is the only time when we have any power." - Leo Tolstoy