This is our journey with our daughter Shannon through treatment for, and ultimately death from, a brainstem glioma tumor. We continue to write about our lives after Shannon's passing as we try to carry on her spirit. We are writing from the heart - parental discretion advised.
Saturday June 29, 2013
Thanks to Rochester's own Eric Butorac, I spent my birthday sitting on Centre Court at Wimbledon with Richard Gasquet, Bernard Tomic, Sam Stosur, Sabine Lisicki, and some guy named Novak Djokovic.
Then, to top it all off, we watched Booty win a mixed doubles match out on court 10 as dark was closing in. Number 44 is one I'll remember...
Friday June 28, 2013
Yes, the crazy family has arrived in London!
Pay no attention to the bags under my eyes... many possible explanations: Could be the two hours of sleep I've had since Wednesday night. Could be the longer than expected waits in airports. (Two mechanical issues on two different planes meant two extra hours of travel time.) It could be my impending birthday...
We are here and we are fighting our body clocks to stay up until it's bedtime here in London. We walked through Borough's Market, had a pub lunch and heard the tales of torture during a tour of the Tower of London.
Tomorrow's plan: spending my birthday on the hallowed grounds at Wimbledon. No complaints...
Tuesday June 25, 2013
48 hours from now, we will be heading towards London. We still can't believe we are doing it, and while the three of us are all very excited, we have been honest with our feelings and we all admit to a little melancholy as well.
This is one of those life experiences that should include the WHOLE family. We should have both our daughters along so we can see their faces as they see new things. Erin should have her sister by her side as we tour London, go to Wimbledon, and take the chunnel to Paris for the weekend. But, as we've said before, we are living in the after. I am sure excitement will build and we will enjoy every minute of our adventure. Shannon will be with us in spirit as we attempt to seize each day and each opportunity to expand our world. She wanted us to go on living life, so that's what we will do.
One of the things I have had to focus on leading up to our trip is my own physical health. Damn, am I tired of trips to the WFMC. But, the lymphedema has reared its ugly head again, so I had to do something. This has meant physical therapy visits twice a week to try to break up some scar tissue and cording that's keeping my lymphatic system from draining. Yesterday, I had to take a step I didn't want to take - getting a compression sleeve and bra. Let's just say, this is not my sexiest look ever...
Dan and Erin helped me deal with it through humor. Upon showing them my new garments, Erin said my arm looks like a fake one. Dan commented that the bra kind of looks like a bulletproof vest. Then he offered to "support" me any way he can. Those comments caused Erin to call him "the meanest husband ever". Ah, a good laugh - even at my own expense - is sometimes the best medicine.
So, I will take my bulletproof vest and my fake arm-looking sleeve and we will cross the pond to jolly ol' England. Erin will visit a foreign country for the first time, and we will do the biggest thing we've done while living in the after. Cheerio...
This is one of those life experiences that should include the WHOLE family. We should have both our daughters along so we can see their faces as they see new things. Erin should have her sister by her side as we tour London, go to Wimbledon, and take the chunnel to Paris for the weekend. But, as we've said before, we are living in the after. I am sure excitement will build and we will enjoy every minute of our adventure. Shannon will be with us in spirit as we attempt to seize each day and each opportunity to expand our world. She wanted us to go on living life, so that's what we will do.
One of the things I have had to focus on leading up to our trip is my own physical health. Damn, am I tired of trips to the WFMC. But, the lymphedema has reared its ugly head again, so I had to do something. This has meant physical therapy visits twice a week to try to break up some scar tissue and cording that's keeping my lymphatic system from draining. Yesterday, I had to take a step I didn't want to take - getting a compression sleeve and bra. Let's just say, this is not my sexiest look ever...
Dan and Erin helped me deal with it through humor. Upon showing them my new garments, Erin said my arm looks like a fake one. Dan commented that the bra kind of looks like a bulletproof vest. Then he offered to "support" me any way he can. Those comments caused Erin to call him "the meanest husband ever". Ah, a good laugh - even at my own expense - is sometimes the best medicine.
So, I will take my bulletproof vest and my fake arm-looking sleeve and we will cross the pond to jolly ol' England. Erin will visit a foreign country for the first time, and we will do the biggest thing we've done while living in the after. Cheerio...
Thursday June 20, 2013
How did it get to be June 20th already? The sky was still light tonight well after 9pm. These long summer days are just made for kids.
Erin reports that this summer is off to a great start. She has been staying up late and sleeping in, except the days she gets up early enough to come to the Athletic Club with me. She's been filling her social schedule and manages to hang out with friends most every day. If she had a driver's license and a debit card, she might not even need me around!
Our summer so far feels like such progress from those dark days this winter when Erin was struggling. She has worked hard to figure out what makes her happy and to process her grief, so she can move forward. Erin may have explained this best herself.
During the book reading event in St. Paul, we had a question and answer segment. During that time, Erin rose from the front row to join me and Dan in front of the crowd. A question came asking when we started to feel better, or what helped us turn the corner and move beyond the early grief. Erin offered her take: "Acceptance. Learning to accept what happened to us." That's a succinct description of a very difficult process. Things can always change, and that's OK, too, but for now, Erin is in a good place.
So today, in between dropping Erin off and picking her up, I had a couple of hours to kill. I swung by the Barnes & Noble at the mall just to see if they happened to have Determined to Matter in stock. I have to admit, my heart fluttered a bit when I saw it displayed on the shelves. There, right next to a book about Barack Obama, is a book about Shannon O'Hara. Wow.
As I made my way to the service counter, I found a second display of the book. Right there on the service counter, Determined to Matter is displayed for all to see. I introduced myself to the store manager, and thanked her for giving the book a prominent place. She was so glad I stopped in, and asked me to sign a few copies so that customers can have that added touch. I was happy to.
This book project has been such a journey for me, and to see it on a shelf in a store is pretty gratifying. I hope it's just the beginning. (If anyone knows, Ellen DeGeneres, Matt Lauer, or Robin Roberts, give me a call...)
In all seriousness, signing copies of the book is an honor. Each time I get to share the book with someone, I think of it as one more person that's going to get to know Shannon. It's one more chance to keep her spirit alive.
As long as people are interested, I'll keep signing...
Erin reports that this summer is off to a great start. She has been staying up late and sleeping in, except the days she gets up early enough to come to the Athletic Club with me. She's been filling her social schedule and manages to hang out with friends most every day. If she had a driver's license and a debit card, she might not even need me around!
Our summer so far feels like such progress from those dark days this winter when Erin was struggling. She has worked hard to figure out what makes her happy and to process her grief, so she can move forward. Erin may have explained this best herself.
During the book reading event in St. Paul, we had a question and answer segment. During that time, Erin rose from the front row to join me and Dan in front of the crowd. A question came asking when we started to feel better, or what helped us turn the corner and move beyond the early grief. Erin offered her take: "Acceptance. Learning to accept what happened to us." That's a succinct description of a very difficult process. Things can always change, and that's OK, too, but for now, Erin is in a good place.
So today, in between dropping Erin off and picking her up, I had a couple of hours to kill. I swung by the Barnes & Noble at the mall just to see if they happened to have Determined to Matter in stock. I have to admit, my heart fluttered a bit when I saw it displayed on the shelves. There, right next to a book about Barack Obama, is a book about Shannon O'Hara. Wow.
As I made my way to the service counter, I found a second display of the book. Right there on the service counter, Determined to Matter is displayed for all to see. I introduced myself to the store manager, and thanked her for giving the book a prominent place. She was so glad I stopped in, and asked me to sign a few copies so that customers can have that added touch. I was happy to.
This book project has been such a journey for me, and to see it on a shelf in a store is pretty gratifying. I hope it's just the beginning. (If anyone knows, Ellen DeGeneres, Matt Lauer, or Robin Roberts, give me a call...)
In all seriousness, signing copies of the book is an honor. Each time I get to share the book with someone, I think of it as one more person that's going to get to know Shannon. It's one more chance to keep her spirit alive.
As long as people are interested, I'll keep signing...
Tuesday June 18, 2013
I've been on the lawn mower this afternoon with the headphones on, revisiting Jack Johnson, one of my favorite summer listens. His surfer dude mentality, mellow voice, and melodic chords make for toe tapping music. But, his lyrics can bring deeper meaning if you are willing to listen.
Today, his music reminded me of past summers when we were more carefree. I have come to grips with the fact that "carefree" will probably never apply to me again. My life will always have the before, and from here on out, I will live in the after. That's what I figured out while riding around on the lawn mower today...
But, the music still managed to make me sing along and smile. All things considered, things are good on Willow Lane. Erin, Sunny and I just returned home from a weekend together with Dan at Grandma and Papa Harkins' cabin just north of Hayward, Wisconsin. Dan left yesterday to catch a plane to Detroit, but before that, we had a good weekend of fun at the lake: swimming, watching the US Open, eating out at a couple of awesome places, and Dan teaching Erin how to run the motor and drive the little fishing boat. He reported to me that he had a good Father's Day.
I had arrived up north from a book event in Minneapolis. My last such event for a month now as we will ramp back up with a couple of Rochester events in mid-July. The big news on the book front is that Determined to Matter is now available in eBook form. So, for those of you who have been waiting, you can now add it to your Kindle, Nook, or iPad. (Tell your friends, too :) It's out there now for all to see...
Now I am home in time for some appointments and meetings and in 9 days we will leave for London. I still can't believe we are going. It's one of those once in a lifetime things that you do with your kids. This trip is a big leap - it's in line with our "enjoy what you have today, because the future is unknown" mentality. We are all excited and will enjoy ourselves, but there will be obvious moments when we remember that we are in the "after" portion of our lives. Shannon will be missing, and we will be sad that she never experienced it.
But, there is no changing the past, only a chance to go forward. So that's what we shall do. "After" can still be good, just different. Seeing Erin have these new experiences will feel good to the mother in me, and that's good enough.
So, today was a Jack Johnson kind of day. Mostly toe-tapping, with a little melancholy undertone from time to time.
Here, in no particular order, are my Jack Johnson Top 10 Songs:
Never Know
Times Like These
Tomorrow Morning
Go On
F Stop Blues
All At Once
Sitting, Waiting, Wishing
Losing Keys
Flake
Cookie Jar
If I Could
Monsoon
(I know, that's 12, but I couldn't narrow it down...)
Today, his music reminded me of past summers when we were more carefree. I have come to grips with the fact that "carefree" will probably never apply to me again. My life will always have the before, and from here on out, I will live in the after. That's what I figured out while riding around on the lawn mower today...
But, the music still managed to make me sing along and smile. All things considered, things are good on Willow Lane. Erin, Sunny and I just returned home from a weekend together with Dan at Grandma and Papa Harkins' cabin just north of Hayward, Wisconsin. Dan left yesterday to catch a plane to Detroit, but before that, we had a good weekend of fun at the lake: swimming, watching the US Open, eating out at a couple of awesome places, and Dan teaching Erin how to run the motor and drive the little fishing boat. He reported to me that he had a good Father's Day.
I had arrived up north from a book event in Minneapolis. My last such event for a month now as we will ramp back up with a couple of Rochester events in mid-July. The big news on the book front is that Determined to Matter is now available in eBook form. So, for those of you who have been waiting, you can now add it to your Kindle, Nook, or iPad. (Tell your friends, too :) It's out there now for all to see...
Now I am home in time for some appointments and meetings and in 9 days we will leave for London. I still can't believe we are going. It's one of those once in a lifetime things that you do with your kids. This trip is a big leap - it's in line with our "enjoy what you have today, because the future is unknown" mentality. We are all excited and will enjoy ourselves, but there will be obvious moments when we remember that we are in the "after" portion of our lives. Shannon will be missing, and we will be sad that she never experienced it.
But, there is no changing the past, only a chance to go forward. So that's what we shall do. "After" can still be good, just different. Seeing Erin have these new experiences will feel good to the mother in me, and that's good enough.
So, today was a Jack Johnson kind of day. Mostly toe-tapping, with a little melancholy undertone from time to time.
Here, in no particular order, are my Jack Johnson Top 10 Songs:
Never Know
Times Like These
Tomorrow Morning
Go On
F Stop Blues
All At Once
Sitting, Waiting, Wishing
Losing Keys
Flake
Cookie Jar
If I Could
Monsoon
(I know, that's 12, but I couldn't narrow it down...)
Friday June 15, 2013
Dan, Erin and I are moving in different directions today: Dan flew from Nashville to Minneapolis late last night. Today, he is the Twin Cities for a golf tournament, returning home tonight for one night in his own bed before leaving again for 7 nights.
Erin left this morning for a trip to Hayward with the Lang/Olson mafia. Looks like a good day and Erin is bound and determined to get in the water even though the ice just went out three weeks ago. I have no doubt she'll be swimming and skiing this afternoon.
I am home finishing up things around the house, starting some prep for our trip abroad, and getting ready for a book event tomorrow up in Minneapolis. If you are out and about tomorrow in the Twin Cities, come by Magers & Quinn on Hennepin and say hello.
By five tomorrow afternoon, the three of us should be reunited up north and spend the weekend together with Grandma and Papa Harkins. Three different routes, three different schedules, but Dan, Erin, and I will be together for Father's Day.
Our plan is to play some golf and watch some golf. Father's day weekend always brings the U.S. Open, which is probably the tournament I enjoy watching the most. The courses are always so difficult that the pros sometimes struggle to make par. That's a little more relatable than watching them shoot 21 under par.
This year's U.S. Open holds a special significance for me and Dan. 19 years ago, while on our honeymoon, we had the opportunity to play Merion Golf Club, the site of this year's open. It's a storied old course, the sight of Bobby Jones' Grand Slam, and Ben Hogan's miraculous comeback from injury with a win at the 1950 U.S. Open.
So, to bore Erin with the story, I pulled out the honeymoon scrapbook and showed her some pictures. Her first comment: "Oh my god, mom, you guys look so young!" The photos don't lie. We were young, and hopeful, and in love. Our future together was promising, and we were excited to get started on making a life together. 19 years later, we've got some battle scars. We're definitely a little older, and, hopefully, a little wiser. Luckily, we're still navigating this life together, and still in love...
Monday June 10, 2013
It has been a series of events lately that have us missing Shannon. Dan and I have been dealing with some melancholy, and it's a stark reminder that we will never be cured of this ill. We will miss her forever.
Last week brought another book event in St. Paul, and talk of Shannon and her fight. It is our mission to share her story, but talking about what a funny, beautiful kid she was brings some the heartache of our loss front and center.
Last week brought the golf banquet and the end to another school year. Another team, another grade that Shannon didn't get to experience.
Last week brought Mayo High School's graduation. Watching Erin's golf teammates and her good buddy Ariana walk across that stage made me happy for them, and sad for us. Selfishly, as a mom, I feel cheated.
Now, we embark on another summer. Family time. And, don't get me wrong, it's going to be a great one. Erin is already in full swing, hanging out with friends three of the first four nights. Is it bad when you just leave the door open for your twelve year old to let herself in because you are too tired to stay up that late? Erin has such good friends and she is loving some new found freedom that comes from being a responsible kid. All good.
This summer will take us to familiar places, and to some new ones. Three weeks from today, we will be in London. We are comfortable now as a threesome, and we will enjoy our adventures. But, sharing these experiences with your kids is part of being a parent, being a family. I can't help but feel we got the short straw on that one.
Memories of Shannon. Missing her. I know that healing from loss is not a linear process, and it goes on forever. It makes no sense, there is no pattern, and that is hard. Sometimes you take a downturn, and you just have to ride it out.
Friday June 7, 2013
Celebrate the days you thrive and the ones you survive...finding the beauty of both the tears and laughter along the way. Jodi Hills
Ms Erin is sleeping in. Its the first day of summer vacation. So Jen and I tiptoe around the house this morning. Actually, Jen is out-the-door to go play some tennis. I am getting ready to dive into some office work.
Rumor has it the clouds will give way to sunshine sometime this afternoon. Then maybe we can get on with summer. For our outstate, blog stalkers; our spring has contained all four seasons. But for the last 10 days or so, Rochester MN has been doing it's best Seattle.
We attended the Rochester Mayo HS Girls Golf banquet last night and we enjoyed tears and laughter along the way. When Coach Myhro called up the 9th graders for recognition I couldn't help but notice Shannon O'Hara was missing. These were her classmates, her buddies. And while that was a gut shot the night's big honor warmed our hearts. The Shannon the Cannon award goes to Megan Greseth - one of Shannon's best friends.
The tears flowed for many of us - but there is beauty in those tears.
Erin enjoyed participating in the banquet, she too loves being part of a team. If we can get her out on the course to work on her game this summer, she will be a factor on next season's Spartan squad.
All this happening on the 6th day of June - we have survived 17 months without Shannon.
Ms Erin is sleeping in. Its the first day of summer vacation. So Jen and I tiptoe around the house this morning. Actually, Jen is out-the-door to go play some tennis. I am getting ready to dive into some office work.
Rumor has it the clouds will give way to sunshine sometime this afternoon. Then maybe we can get on with summer. For our outstate, blog stalkers; our spring has contained all four seasons. But for the last 10 days or so, Rochester MN has been doing it's best Seattle.
We attended the Rochester Mayo HS Girls Golf banquet last night and we enjoyed tears and laughter along the way. When Coach Myhro called up the 9th graders for recognition I couldn't help but notice Shannon O'Hara was missing. These were her classmates, her buddies. And while that was a gut shot the night's big honor warmed our hearts. The Shannon the Cannon award goes to Megan Greseth - one of Shannon's best friends.
Megatron wins the Shannon the Cannon award |
The tears flowed for many of us - but there is beauty in those tears.
Erin enjoyed participating in the banquet, she too loves being part of a team. If we can get her out on the course to work on her game this summer, she will be a factor on next season's Spartan squad.
All this happening on the 6th day of June - we have survived 17 months without Shannon.
Wednesday June 5, 2013
It's been a busy week for us, and it's only Wednesday! Busy is good, so I'm not complaining. The events of this week will include: two trips to the Twin Cities, one doctor's appointment, a golf tournament, a book reading, and trying out Zumba for the first time. Uff da.
Let's start with Zumba. Erin has been wanting to check out this Latin dance/exercise class. So, Sunday we headed to the RAC to give it a try. Now, I have to confess: I have been working at the RAC on and off for 19 years, and this is the first group exercise class I have ever done. Just goes to show we will do anything for our kids!
Erin liked it, and I did, too. The only drawback is the giant mirror that covers two walls. You see, I feel like I'm doing the moves exactly like the instructor until I catch a glimpse of myself in the mirror. Yikes. It's a good thing our minds treat us kindly, because the mirror tells a different story... but, it didn't scare me off, and Erin and I went back again last night for our second ever group fitness class.
My doctor's appointment yesterday was my first post-radiation return visit to the Breast Clinic. This will be something I do every 6 months for the next 5 years. No scan was done yesterday as things are still healing from the radiation therapy. My next scan will be in November or December. Dr. Pruthi is wonderful, and we discussed the status of things. I still have some swelling, so I'm headed back for some PT to get the lymph system working more efficiently. I will begin taking Tamoxifen, an anti-cancer drug, after we return from Europe. I didn't want to mess with a new drug that will change my hormone balance before our big trip, so it will wait until July.
With all that is going on in our lives, I sometimes forget I had breast cancer. I have to admit, talking about it yesterday was sobering. When Dr. Pruthi pulled up my medical record, well, that stat sheet is pretty full over the last 18 months. She was looking for a pathology report and had to dig through dozens of other appointments (gynecology, dental specialties, psychology). Since Shannon's passing, my body has betrayed me over and over. It's time for that to stop...
Monday, Dan and I played in the St. Jude Tournament of Hope golf event in Bloomington. We connected with many St. Jude supporters who will also be a part of the Fall Festival where we will be speaking and sharing Determined to Matter. It is wonderful to see these people open their hearts - and wallets - to help the cause of fighting childhood cancer. There were two St. Jude families there, and both of us had lost our children to brain tumors. There was supposed to be a third family present, but they were unable to attend as their daughter was put on hospice this week. She will lose her battle soon against the same type of tumor that took Shannon's life. Needless to say, we've had plenty of reminders this week that funding and research still need to be the focus so that things can change in the future.
To that end, we will keep sharing our story and our book in the hopes of helping that funding. Tonight, Dan, Erin and I will be in St. Paul at Micawber's Books for a book discussion, reading, and signing. We hope our Twin Cities friends can come join us. Luckily, lots of O'Haras live in the vicinity, so at least we know we won't be playing to an empty room...
Let's start with Zumba. Erin has been wanting to check out this Latin dance/exercise class. So, Sunday we headed to the RAC to give it a try. Now, I have to confess: I have been working at the RAC on and off for 19 years, and this is the first group exercise class I have ever done. Just goes to show we will do anything for our kids!
Erin liked it, and I did, too. The only drawback is the giant mirror that covers two walls. You see, I feel like I'm doing the moves exactly like the instructor until I catch a glimpse of myself in the mirror. Yikes. It's a good thing our minds treat us kindly, because the mirror tells a different story... but, it didn't scare me off, and Erin and I went back again last night for our second ever group fitness class.
My doctor's appointment yesterday was my first post-radiation return visit to the Breast Clinic. This will be something I do every 6 months for the next 5 years. No scan was done yesterday as things are still healing from the radiation therapy. My next scan will be in November or December. Dr. Pruthi is wonderful, and we discussed the status of things. I still have some swelling, so I'm headed back for some PT to get the lymph system working more efficiently. I will begin taking Tamoxifen, an anti-cancer drug, after we return from Europe. I didn't want to mess with a new drug that will change my hormone balance before our big trip, so it will wait until July.
With all that is going on in our lives, I sometimes forget I had breast cancer. I have to admit, talking about it yesterday was sobering. When Dr. Pruthi pulled up my medical record, well, that stat sheet is pretty full over the last 18 months. She was looking for a pathology report and had to dig through dozens of other appointments (gynecology, dental specialties, psychology). Since Shannon's passing, my body has betrayed me over and over. It's time for that to stop...
Monday, Dan and I played in the St. Jude Tournament of Hope golf event in Bloomington. We connected with many St. Jude supporters who will also be a part of the Fall Festival where we will be speaking and sharing Determined to Matter. It is wonderful to see these people open their hearts - and wallets - to help the cause of fighting childhood cancer. There were two St. Jude families there, and both of us had lost our children to brain tumors. There was supposed to be a third family present, but they were unable to attend as their daughter was put on hospice this week. She will lose her battle soon against the same type of tumor that took Shannon's life. Needless to say, we've had plenty of reminders this week that funding and research still need to be the focus so that things can change in the future.
To that end, we will keep sharing our story and our book in the hopes of helping that funding. Tonight, Dan, Erin and I will be in St. Paul at Micawber's Books for a book discussion, reading, and signing. We hope our Twin Cities friends can come join us. Luckily, lots of O'Haras live in the vicinity, so at least we know we won't be playing to an empty room...
Golf Tournament Fundraiser
I'm finally getting around to sharing this with you - here's the info on our first annual golf scramble, taking place this July:
Shannon loved being a part of the Mayo Girl's Golf Team, and they gave her a chance to be a Mayo Spartan. This event will give us a chance to support them as well as our foundation.
We expect this to fill up, so get your entry in soon! Click the link below to download a registration form.
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