A conversation with NFL player and patient advocate Rolf Benirschke

Earlier this week, I had the opportunity to attend an event with NFL player and patient advocate Rolf Benirschke.  This event took place at the New York State Capitol and was put on by GOBOLDLY and New York Health Works.  The event was attended by a diverse group of people including legislators, legislative staff, researchers, pharmaceutical company representatives, representatives from healthcare organizations and patient advocates.  I was excited to have the opportunity to attend this event.  I am trying to learn as much as I can about health care and patient advocacy.  I attended this event with one of my best friends, Jen.  She is the New York State and Vermont Advocacy Director for the National Multiple Sclerosis Society.

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The event opened up with NY Assemblywoman Crystal D. Peoples-Stokes (D-Buffalo).  She talked about her experience working with hospitals in Buffalo and how they collaborate with private companies who are working bringing the latest medical technology into Buffalo Hospitals. She also shared a personal experience about a friend with lung cancer who was receiving a cutting edge therapy in New York City that was developed in Buffalo at Roswell Park Cancer Institute.  

Rolf Benirschke was in his second season as a kicker for the San Diego Chargers when he was diagnosed with ulcerative colitis.  In his third season, he collapsed on a cross country flight and had to have two surgeries and spent 5 weeks in the ICU.  Like Bryon, he lost part of his intestine and went into septic shock and had organs shut down.  He came close to dying.  Rolf states that he didn’t know why his life was spared, but he was given a second chance.  He got his position back with the San Diego Chargers and played for seven more seasons.  

Rolf also stated that while he was in the ICU, he received 80 units of blood.  This was in 1979 when blood screening wasn’t as safe as it is today.  Rolf contracted Hepatitis C.   Rolf was given therapies for Hepatitis C which worked.  He expressed gratitude because he knew that he was lucky.  He brought up how Arthur Ashe contracted HIV from a blood transfusion that he received while having heart surgery.

It was inspiring to see Rolf share his story because the only way we are going to make positive changes in our healthcare system and patient care is by education.

We are living in exciting times when it comes to medicine.  My job is in oncology data and I see it.  They can test some tumors for the specific markers within that tumor and a patient can get a treatment based on their specific tumor markers.  I truly hope that diseases with a grim prognosis will be curable in our lifetimes.  

Jen and I got a chance to speak to Rolf.  We discussed barriers to patient care and we discussed part of Bryon’s story.  I encourage everyone to get out there and learn about the healthcare system.  You don’t need to work in healthcare to learn about it.  You never know when you need to apply that information for your own care or that of a loved one.

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All that remains

I am going to preface this post by stating that Bryon and I did meet through politics so politics plays a role in our story and it may come up from time to time.  However, this is not a political blog.  It’s a blog about grief, life, love and resilience.  There will be no political commentary from me.

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A seer sucker suit hanging in the closet.

A vintage briefcase bought at an estate sale.

A shelf of books.

A pair of size 13 Aldens in the closet.

A whole bunch of Brooks Brothers bow ties.

Bryon’s Albany Law Rugby sweatshirt with “Shrek” embroidered on the sleeve.

Several copies of Smithsonian Magazine and The Economist.

A lot of political memorabilia.

His coat hanging off the back of a dining room chair.

A six pack of beer in the back of the fridge, untouched after 14 months.

His laptop bag filled with a folder of travel documents from our last cruise 15 months before.

One voicemail I found in the deleted files on my phone.

This is a list of items that remain from Bryon.  This is certainly not an exhaustive list. These items are reminders of who he was and the life he lived.  The capture aspects of his personality and his passions.  These very reminders sting whenever I look at them, but at the same time, I can’t get rid of them because they are all that remain.  Every time I get rid of an item that belonged to Bryon, I feel like I am getting rid of a piece of him.

But so much more remains of Bryon’s memory than the items that clutter up my house.

This weekend I had the honor of co-presenting the first ever New York State Young Republican Bryon McKim Alumni Award.  I was touched, but I wasn’t expecting to get as emotional as I did.  Bryon and I hadn’t been actively involved in this organization for a couple of leadership cycles.  There were several old friends but most of the faces in the crowd were new to me though they welcomed my daughter and I as if we were old friends. This organization had played a large role in our life for several years, both at the state and national level.  I was reminded that this was our beginning.  Our love story started at a New York State Young Republican Event.  If it wasn’t for the Young Republicans, Bryon and I would never have met, fallen in love, gotten married or had our daughter.  It was almost as if I was in the part and present at the same time.   Being at that meeting brought up all those emotions because even though it had been years, once I was sitting down at that dinner, it almost felt like I was reliving those memories.

I just think about all the ways the people who knew Bryon have chosen to honor him. The Bryon C. McKim Memorial Derby Party.  The Bryon “Shrek” McKim Albany Law School Memorial Alumni Match and the Shrek award.  The New York State Young Republican Bryon McKim alumni award.  People don’t choose to honor your memory if you hadn’t made some sort of difference in their lives.  Bryon touched so many lives and I appreciate that his memory being honored.  So many people die and ultimately become forgotten and it is comforting to know that Bryon won’t be forgotten.

It means so much when the recipients of these awards say wonderful things about Bryon in their acceptance speeches, though as time passes, I expect that the recipients of these awards will remember Bryon decreases.  Eventually they will only know about Bryon through his legacy that is passed down by others in the respective organization.

Everytime I go to an event that honors Bryon, it still hits me like the proverbial ton of bricks that I am attending a memorial event.  Memorial events are to remember dead people.  Bryon is dead.  Gone.  He is a memory.  But I will show up because it is important for me to honor Bryon’s memory and honor those who choose to keep his memory alive.

Bryon has left behind a legacy of friendships.  Bryon had built relationships with so many people from so many different areas of his life.  But his legacy of friendships isn’t just with those he had relationships with, but also with all the people that have been brought together because of Bryon.  Bryon was a really good mediator which was a talent that could be a headache for him at times, but he took the responsibility of this talent seriously.  Many of my friendships are the result of the bridges that Bryon built between others.

Bryon was full of life and leaves behind so many stories, most of them hilarious.  At Saturday’s event, I was talking to a good friend.  Her father died when she was little and that she heard a lot of stories about her father through his friends and that she feels like she knew her father from these stories.  She assured me that my daughter will know Bryon from all these stories.  Many people have said this to me, but honestly, it was a sentiment that always felt hollow to me.  One of those comments that is well-intentioned but feels like it was just said to me to try to comfort me.  It meant so much more coming from someone who grew up in the same situation that my daughter will grow up in.  But my friend is absolutely correct.  Bryon has left behind a legacy filled with stories  and those stories will ultimately be passed down to our daughter through his friends.  And even though it’s painful to think that my daughter will not remember Bryon, I am thankful that Bryon left a legacy that includes all these stories and friends.  Not every child who loses a parent has that legacy.

On my two hour drive home, I just kept thinking about Bryon and our early years.  So I decided to end this post with pictures taken at various Young Republican events.  We weren’t good about remembering to take photos so please remember to take photos! Someday they will be what remains of you.

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Young Republican National Federation Fall 2008 Board Meeting in Nasvhille. Bryon called this our High School Prom Picture because of the way we were posed.
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New York City Young Republican Club Holiday Party, 2008.
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New York State Young Republican Convention in Staten Island, 2009
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New York State Young Republican Day at the races, 2010
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Young Republican National Convention in Indianapolis, 2009
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Young Republican National Convention in Indianapolis, 2009.  Doing one of the things he did best.
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New York State Young Republican Convention in the Finger Lakes (wine country), 2011

First Annual Bryon C. McKim Memorial Derby Party

I have two words to describe Derby Day 2017.  

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The first word is Epic.

We all came ready to celebrate the two most exciting minutes in sports.

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There were old friends enjoying each others company.  There were new friendships formed.  Lots of laughter, celebration and happiness were in the air.

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There were lovely ladies in dresses, hats and fascinators.  

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There were dapper men in seersucker suits.  

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Delicious food was served- bourbon meatballs, pulled pork sliders, mini Kentucky hot browns, mint julep chicken skewers and chicken and waffle skewers.  Because we all know that food tastes better when it is served on a stick.

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Makers Mark Mint Juleps were consumed in special Bryon McKim souvenir cups.  So many Mint Juleps were consumed that the bar ran out of Makers Mark two hours into the party.  Bryon would be particularly proud of that.  

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There was a silent auction full of amazing items that were generously donated from members of our community.  The silent auction was accompanied by friendly competition to outbid each other.

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The second word is Bittersweet.  

We were having a great time but we all knew that this party would not be happening if Bryon was still alive.  If Bryon were still alive, we would have been having our annual Kentucky Derby party in our backyard.  The backyard party would have been at a smaller scale but just as fun.

Ultimately Bryon had to die to bring us all together to have a good time.

As much fun as I had on Derby Day, I would have given it all back if it meant Bryon would still be here.  But I think I am reaching the point in my grieving process where I am beginning to accept Bryon’s death as it is.  I have days where I still ask “why” but I know that even if I can figure out the “why,” it doesn’t change anything.  Bryon will still be dead.  And there is nothing that can change that.

We can’t change the fact that Bryon is gone but instead we chose to take a horrible situation and make the best of it.  Many people die without leaving their mark (pun not intended) on this world but Bryon made his mark (okay, pun was intended this time) and we made the choice to keep his memory alive.  Derby Day had the potential to be a very sad day but instead, we chose to celebrate Bryon’s favorite day of the year.  And we celebrated in true Bryon McKim fashion.  I am grateful that I had so many amazing people to celebrate Bryon’s life with.  We all remember what a difference he made in this world. He helped so many people when he was alive and we chose to continue his legacy and help others in his memory.

I want to thank the Bryon C. McKim Derby Party Planning Committee: Vince Casale, Lynn Krogh, Danielle Grasso, Joseph Hanson, Jennifer Muthig, Mike Utzig, Nick Wilock, Jennifer Armstrong, Mike and Natalie Kosar, Sara Stein and everyone else who assisted in the planning process.  I am awe of your talent and you ran this event like a well oiled machine.  You could run a small nation.  Bryon would be proud.

I want to thank our sponsors for supporting the event and all the business who generously donated items for our silent auction.  My daughter and I are very lucky to be part of such a supportive community who looks after their own.

I want to thank Wolff’s Biergarten for all your hospitality and help putting on this event.  You were great to work with and made our experience enjoyable.

And I want to thank everyone who came out to support our event to celebrate Bryon’s life and keep his memory alive.  One of the biggest fears that a grieving person has is that their loved one will be forgotten.  Thank you for reminding me that while Bryon may be dead, he did live.

I look forward to celebrating with you again in 2018.

Advocating for MS in the State Capitol

I had an amazing opportunity this week to advocate for people living with Multiple Sclerosis.  It all started a few months back when I told one of my best friends that the company I work for gives every employee five paid days to volunteer each year.  (Something more companies should do.)  My best friend is the Advocacy Director for the National Multiple Sclerosis Society serving New York State and Vermont.  Part of her job is to give people living with MS the tools they need to be advocates.  So I told my best friend that I have 5 volunteer days that my company gives me and I may as well use them and the MS Society is definitely a cause I support.  My best friend invited me to join her team when they spent the day at the New York State Capitol advocating for several issues that affect MS patients.

I have several friends who live with MS as well as a few distant family members that had MS but I never realized how little I knew about the disease.  Some of the things I learned included:

  1. The cost of medicine is astronomical and ridiculous.  A medicine that has been on the market for 20 years that was $8,000 thr year when it came out now costs over $80,000 a year.  So if someone needs this medicine and has a 20% coinsurance payment, they have to pay over $16,000 a year for the medicine.  I don’t know how it is reasonable to expect a middle class or lower class person to be able to afford that.  One of the people advocating said that they knew a middle aged person who had to move back in with their elderly parents because they couldn’t afford to live on their own and pay for their medication.  I remember complaining when the copay for my albuterol inhaler went from $20 to $40 and this is a harsh reality check.
  2. The lack of transparency from insurance companies can make it difficult for MS patients to be able to choose treatment.  Sometimes a drug may lose its effectiveness or require some trial and error but it’s hard for a patient to make that change if they can’t get a clear answer from their insurance company as to how much the out of pocket expense is going to be.
  3. MS patients don’t get to choose if they receive their drugs through the mail or at a local pharmacy.  Their insurance company makes that decision.  Some people like to get their drugs in the mail and it works out great but for other people it doesn’t work.  Sometimes the drugs are stolen and since they are expensive, the mail order pharmacy may be hesitant to resend them (it’s not Amazon.com who will usually resend an item that doesn’t show up). An MS patient usually has to jump through hoops to get the medication they need and any gap in medication coverage can cause big problems in their treatment.

I learned so much during this day.  In addition to learning about MS, I learned about the process of meeting with legislators and discussing issues and seeing how change could happen.  I was in awe of my best friend as she would talk to the legislators or their representatives.  It was amazing to see her in action.  My fun-loving friend got down to business!  I was also in awe of the MS patients who bravely told their stories to help themselves and others afflicted by the disease. At first I felt a little self conscious because I was “just a volunteer” when everyone else was an employee or they were living with MS but everyone welcomed me to the team.  And they answered my stupid questions too without making me feel stupid.

When Bryon was in the ICU, I had to learn very quickly how to advocate for him.  It does not matter how good the hospital is, one must stay on top of what the doctors are doing and saying.  I think the struggles I had are the same struggles that others have regardless of illness.  One of the things that always seemed to concern me was that the different teams of doctors didn’t seem to communicate and I heard that was also the case with MS patients.  MS patients have to see neurologists that specialize in MS and if they see another type of doctor, it is imperative that that doctor communicate with their neurologist because what might be a standard treatment for a healthy person may cause serious complications to a MS patient.

While a patient (or their family as was my case) should always be aware of what is going on, I know it was exhausting to have to stay on top of the doctors to make sure they had the correct up-to-date information.  But I had to do it.  I have a background in healthcare since my profession is in Oncology data but I can’t imagine how much harder it must be for patients and family members who do not have a background in healthcare.  Bryon could not advocate for himself and my heart breaks for the patients who don’t have family members who work in healthcare and don’t understand healthcare jargon.  I can’t imagine how lost they must feel.

After this experience, working to make sure patients and patients families have to tools to advocate for themselves is important to me.  I don’t want anyone to feel like they were hit by a steamroller like I was.  I hope I get more opportunities in the future to advocate for patients and their families and I thank my friends at the MS Society of New York for this including me.

“On this day” should be changed to “More depressing sh*t”

I belong to a few widow(er) facebook groups and it comes up periodically that the “On This Day” feature on facebook is a minefield full of triggers.  The triggers aren’t just reminders of illness and death.  The triggers are also the happy memories because you are reminded of the life that you are missing.

Some days I didn’t talk much throughout my history on facebook.  But some days are chock full of memories.

On this day in 2009, I was attending the Midcoast Maine Young Republican Meeting.

On this day in 2010, I was having a bad day at work and wanted to go home and drink. Considering I was working in the ER, that sounds about right.

On this day in 2011, I was out of work for the weekend and I had a hot date.  Of course someone commented and asked what Bryon was doing that night.

On this day in 2012, I was at a Bruce Springsteen Concert at the Times Union Center with Bryon.  I also was pissed that the Red Sox blew a 9-0 lead and I wanted Terry Francona back.

On this day in 2013, I hated Windows 8. I still do.

On this day in 2014, I was wishing all Boston Marathon Runners Good Luck.

I apparently wasn’t doing anything on this day in 2015.

On this day in 2016, I had my first glimmer of hope.  I remember writing that facebook status and feeling relieved.  We were finally on the road to recovery.  I remember being told that he would probably be in the ICU for another month or so and then he would go to rehab for a couple months.

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But we now know that that road would never lead Bryon to recovery.  It’s like I can feel all the emotions I felt waiting for that road to recovery at the same time; the frustration, the anger, the sadness, the hopefulness, the desperation.  However, it is also mixed with the grief and emptiness I feel every day from Bryon’s death.

Those memories are always going to be there whether they are on Facebook or in my memory.  I can’t un-live it.  I can’t pretend it didn’t happen.  And I don’t want to forget my memories with Bryon.  We had too many good times.  I can only hope that as time passes, I can think about these memories without crying and being overcome with sadness.  I want to be able to look back and smile.

I must move forward and try to fill my future with happier memories with my daughter and my family and friends.

Blizzard of 2017

After I put my daughter down to bed, I thought to myself that I need to remove some of this snow.  Normally my amazing neighbor plows me out but he was in Florida.  I was going to have to do this alone.  I went to the garage and looked at the snowblower.  I have never used the snowblower.  Bryon bought a high end model and a good friend of his showed me how to use it last fall.  And of course I couldn’t get the thing to start.  It is most likely the fault of the operator.  There probably wasn’t any gas in it. I googled some YouTube videos (because everything is on YouTube) but I still had no luck.  Luckily, I own an old fashioned snow shovel and as I was shoveling my driveway during the Blizzard of 2017, or Storm Stella, many thoughts came through my mind.

First I want to address a pet peeve of mine.  Why are they naming winter storms?  They are not hurricanes.  Naming winter storms is like “Fetch” and they need to stop trying to make it happen.

So during the beginning of shoveling, I was all “I am woman, hear me roar!”  Us younger widows are tough.

Then I wanted to forget the “I am woman, hear me roar” crap.  I need to start taking applications for Husband #2.  Bring on the quasi-traditional gender roles. (I am kidding, of course.  About the husband.  I am a modern woman but having some semblance of traditional gender roles doesn’t bother me.)  At this point, I don’t need any romance or intelligence.  I would settle on usefulness.

I started to ask why did my Bryon have to die? If he were alive, he would be using the snowblower and listening to some online radio station from the Virgin Islands.  At least in our old life.  I always tend to forget that even if he were still alive, things would be very different.  Had he survived, he wouldn’t have been the physically strong man he was.  He would have had some long lasting health problems.  He would be too weak to snowblow or shovel or he would still be in rehab and I would probably be in the same position.  I also began to wonder if he had survived, how would he feel about the new dynamics.  He was always a take charge person.  The last thing he would have wanted was to be dependent on me.  It would have frustrated him but at the same time, he would have been grateful.

I started to think that the Blizzard of 2017 really sucks. Then I remembered what I said to myself at the beginning of the year.  There is no way that 2017 can be as bad as 2016.  Almost half of 2016 was spent in an ICU room and a third of 2016 was spent in the earliest, most raw stages of grief.  Shoveling snow might suck but I would rather be shoveling snow than be sitting in an ICU room.

My muscles were beginning to ache and I started to whine to myself.  Then I remembered the pain Bryon was in during the final months of his life.  It seemed silly to be upset about pain that some Ibuprofen and a heating pad could take away.  I also began to feel grateful that I was alive and that my fat and asthmatic body was able to shovel snow.  It might take me three days to shovel my driveway but I could do it.

At one point I stopped and asked myself a question I ask myself a lot: what would Bryon McKim do?  The answer was simple, Bryon McKim would grab a beer (or several).  I don’t usually keep beer in the house.  I am not a big drinker, usually just wine with the girls.  But when I was grocery shopping, I saw Saranac S’mores porter and I thought it looked interesting so I bought it.  Maybe I subconsciously knew I was going to need a beer.  I rested the beer in a snowbank though it didn’t taste good after awhile.  It was still snowing and snow was getting into the beer.  And the porter started to ice up.  Oh well.

My daughter was inside sleeping and I started to think about what life would be like when she was older.  If she were older, she would have had to help me.  Was she going to help willingly or be a little stinker like I was?  I know growing up I gave my father a hard time when he told me to help with snow shoveling. Though I gave him a slightly less of a hard time when it came to shoveling out my grandmother.  I thought about how it was just my daughter and me and we were going to have to depend on each other much more than we would have if Bryon was still alive.  And she doesn’t have siblings to share the burden.  I began to worry that she might grow up earlier than most kids because of our situation.

I started to think about my retirement dream where I buy an old farmhouse on the coast of Maine.  My retirement home will likely have a long driveway so I decided that I was going to have to purchase a truck and a plow when I retire.

By 10:30, the snow was still coming down and the wind was picking up.  I was really starting to get cold so I figured that the snow will still be there in the morning and surely daycare would be closed.  So I went inside, took a hot shower and then watched the Season Finale of This is Us.  Then I went to bed.

The next morning, I was surprised that wasn’t closed or even delayed.  Half of my driveway wasn’t shoveled.  So I bundled my daughter in the Gap snowsuit that I bought in a large size two cyber Mondays ago that barely fits now. Ironically it was her first time wearing it  because it the snowsuit was too large last winter and we barely had snow this winter.  I was kind of glad it got one wear before being passed on to a friends daughter.  I told my daughter to go be like Elsa while I shoveled.

I shoveled until my daughter told me she was cold.  Then we went back inside.  One of my girls has a son that attends the same daycare as my daughter and she came by to bring her to daycare but there was a huge snowbank in the way.  Luckily, just then my neighbor’s brother-in-law showed up to plow me out and I was able to take my daughter to daycare.  Crisis was over and everything was okay.  

My muscles might still be achy but we survived our first major storm.  Bring on Spring.  I didn’t get to enjoy Spring last year so I am ready to enjoy it twice as much this year.

Maine roots and a New York legacy

I love Maine.  

I love the ocean, the coastline, Maine politics, fried clams, pine trees,  L.L. Bean, Moose, red hot dogs, Reny’s, Marden’s, late night trips to Dysarts, Moody’s, Lobster, Pat’s Pizza, Acadia National Park, Kettle Cove, UMaine hockey, potato fields, Lamoine Beach, going to the shooting range with my father, Jordan’s Snack Bar, Big G’s. Dairy Queen Blizzards in the middle of winter, summer nights in Bar Harbor, the Sea Dog, clam chowder, reading angry letters to the editor in the Ellsworth American, Amato’s, Bob the black bear that lives in the woods behind my parents house, The Mex (even if Bryon threatened to break up with me if I made him eat there again), Coffee Express, seeing Stephen King in public even if he is rude if approached, Schoodic Point, Ben and Bills peanut butter cup ice cream, flannel shirts never going out of style, lighthouses, the fact that everyone roots for the Red Sox and Patriots, Raye’s Mustard, bean and casserole suppers, China Hill, Shipyard beer, and probably a whole bunch of other things I will think of after I hit “publish”.

I even don’t mind the never ending winter, frost heaves, mud and black fly season.  The only thing I don’t like about Maine is Moxie because it is disgusting.  I also think Whoopie Pies are a bit overrated.

I left Maine in 2009 for a guy.  The gamble paid off because I married that guy three years later.  He never had any interest in moving to Maine and while I missed Maine, I never really looked back. I never entertained the thought of returning until he was dying.  The thought of raising my daughter by myself was scary and in Maine she would have two grandparents who love her.

As Bryon was actively dying I started to panic. I was thinking that I could not do this by myself.  I was going to need help raising my daughter and I started to think that the only logical solution was to move back to Maine as my parents are there.  I convinced myself that this was what I was going to do on the car ride back to Albany.

So…why am I still in New York?  Why haven’t I moved back to Maine?

Once I got back to Albany, I began to realize that I was not ready to leave the life Bryon and I had built.

Bryon and I had bought our house two and a half years before he died and we already had so many memories.  I wasn’t ready to leave this house.  This was the house where we welcomed our daughter into our family.  We celebrated two Thanksgivings, two Christmases and two Easters in this house. We hosted two derby parties in our house.  We spent many spring and summer afternoons sitting on our front deck. This house was going to be our starter house and we weren’t planning on staying in this house for more than 5-7 years.  We even made comments about how small the house felt and how much smaller it was going to feel when we had another baby.  While we weren’t going to live our dreams together after all, I wasn’t ready to leave the ghosts of those dreams.

Home is more than a house.  Home also includes those you love.  I depended on so many of our friends during the course of Bryon’s sickness.  Not just for physical help but I depended on them emotionally.  I can’t leave them.  They were with me through the hardest months of my life. I wouldn’t have gotten through this crisis if it wasn’t for them.  Our bonds have only gotten stronger.  My friends here have become my family and my daughter has so many aunts and uncles here who love her and look out for her.

The last and most important reason I am still in New York is my daughter.  She was 18 months when Bryon went into the hospital for the last time and she was 23 months old when he passed away.  She won’t have any first hand memories of him.  She will only know him through the stories she will hear as she is growing up.  She needs to grow up in the place where her father had lived.  She needs to go to the Saratoga Racetrack and Siena basketball games and Albany Law rugby tournaments.  She needs to be around the people who loved Bryon and that were important in his life. To move her to Maine would remove her from all of this and I can’t do that to her.

Until my daughter goes to college, we will stay in New York.  Then I might return to Maine in 2032 and buy an old farmhouse in a coastal town.  Ocean view would be a bonus.  Or I might decide that I have had enough of winter and move to the US Virgin Islands or something.  I’ll figure it out sometime in the next 15 years.