Father’s Day without you

Here we are.  Father’s Day.  The second to last first holiday without you.  Unlike all the other holidays, I couldn’t just go through the motions since this holiday is centered around you.  Each holiday was drastically different, but I still had events to distract me.  

On Halloween, our daughter and I were invited to go trick or treating with friends in a neighboring town.  Our daughter was a cheerleader. There were other kids who were our daughters age and she had a blast.  She totally understood the concept and would run up to each door and do a happy dance each time she received candy.

On Thanksgiving the family met at my brothers in New Hampshire and I cooked dinner.  I also ran a Turkey Trot and at one water station they were giving out beer.  I took one because I knew that you would been disappointed if did not.  I only managed a sip.  

On Christmas, our daughter and I continued to see our friends.  Instead of continuing Christmas Eve afternoon at the pub, some of us started the new tradition of Feliz Navidad Brunch.  We visited your grave.  We went to Mass even if I still think the whole religion and praying thing is pointless.  Santa may have gone overboard with Amazon Prime.

Our friends and I stayed up on New Years Eve.  Mariah Carey was so bad that it was epic.  I made poblano macaroni and cheese, which is a crowd favorite.  I learned to make it after you died so you have never tasted it, but you would have loved it.  We went to New Beginnings Brunch the next day.

Valentine’s Day was filled with love from our friends.  They didn’t forget about us.  Even Carter the dog thought to get us roses.

I made a ham on Easter.  We colored Easter eggs and we went out for ice cream.

Mother’s Day was spent at Baby Animal Day at Indian Ladder Farm.

But today I couldn’t avoid the fact that you were not here.  I kept thinking about how you were looking forward to our daughter being this age.  You were so excited for her to start talking.  You couldn’t wait to hear the funny things she was going to say.  I know you would have had some pretty ridiculous conversations with her.  

I just not fair that she is going to grow up without you.  All these other kids get their fathers and she doesn’t.  She doesn’t remember life with you so she seems content that it is just me and her.  But I always think about how life should have been.  If you were still alive, we would be planning on having a second kid soon.

One thing that struck me today is that our daughter is always asking why.  I always answer because I like to think she is trying to figure out how the world works.  But today when I told her you were in Heaven.  I braced for the “why?” but she didn’t ask why.  I know that question is coming.  Don’t worry, she will know all about you.  She will know you loved her very much and that you still do.

So today we visited your grave.  I cried because this isn’t how we were supposed to be celebrating Father’s Day.  We should have spent the day doing whatever you wanted to do.  But instead, I spent the day thinking about how you are not here.  There will be no pictures on Facebook of you spending time with our daughter.

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I did decide that we would go out for ice cream since you wouldn’t want us to spend the day being sad.  But please know that no matter what happens in life, you will always be missed.

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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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Just because I am a widow…

Just because I am a widow doesn’t mean that I can’t make my own decisions.  Please stop second guessing my choices.  

Just because I am a widow doesn’t mean I am helpless.  I am actually the opposite of helplessness.  I watched my spouse die.  I survived something that most people can’t even imagine.  I might need help with some tasks, but don’t misconstrue that as helpless.

Just because I am a widow doesn’t mean that you can ignore my feelings and dismiss them as part of grief.  Trust me, I have don’t more thinking in the past year than I did my previous 37 years.  My feelings are very well thought out.

Just because I am a widow doesn’t mean that I need to defend my feelings, especially those about God.  A widow is allowed to be mad at God.  It is not your place to scold her or re-educate her.  It’s up to the non-grieving to be supportive and understanding.  

Just because I am a widow, it doesn’t mean I need to put up with poor treatment.  I have been through something so horrendous that you probably can’t even comprehend.  I miss my spouse and I can be lonely.  But I am used to being lonely and I would choose that over being around people who treat me poorly.

Just because I am a widow doesn’t mean that I don’t have responsibilities.  I have a full and busy life.  I am not just sitting around my house.

Just because I am a widow doesn’t mean you can tell me how to raise my child.  I am capable, thank you.  My child is happy and well taken care of thank you.

Just because I am widow doesn’t mean I am desperate for love.  (This one is directed to all the scam Twitter accounts that started following me.  The ones that when you look at who they follow and they are all widows).  Trust me, I had the love of my life and I lost it.  When I decide to date again, it isn’t going to be with some random, bogus Twitter account.

 

An epiphany

There have been two feelings I have had my whole life.

The first feeling of restlessness.  I have always felt that there is a whole world out there to see.  So much history and culture to absorb.  Different people with different routines and traditions.  

I had only left New England seven times before I went to study in England the fall of my junior year in college.  Three of those times had been to Canada (New Brunswick, Quebec City and Montreal), two had been to New York (NYC and Niagara Falls with a side trip to the Canadian side) and one trip to Gettysburg, PA and one trip to Washington D.C.  The flight from Boston to London at the age of 21 was my first time flying on an airplane.  I have since seen more of the U.S. between my involvement in the Young Republican National Federation and my parents purchasing an RV.  I have seen more of the world due to Bryon and my love for cruising.  And I don’t plan on stopping.  I promised Bryon I wouldn’t stop.

Don’t get me wrong.  I do love my small Maine town.  I miss Maine, especially the people and the ocean.  But I always felt like there was more in the world and I wanted to experience it.  Maine did feel so isolated.  The only cities you could travel to easily by car was Boston and Quebec City.  I always wanted to be close to more US cities.  I love Boston (my birthplace) and Quebec City but I love having the option to do weekend trips to other cities.  

I still feel that urge to see the world.  It doesn’t matter if it is a back country road or a big city.  I just love to see new places.  I love historical sites and museums.  I love trying local food.  I love shops.  I love scenery.  I want to see it all.

The second feeling I have had my whole life is that I have always felt like an outsider. That I am on the outside looking in.  I never felt included despite being involved in sports, clubs, and later politics.

This brings me back to high school and college.  I always worried where I fit in.  I wasn’t cool but I wasn’t uncool either.  I wasn’t particularly included but I wasn’t excluded.  I had friends but I wasn’t invited to the cool parties.  Though looking back, I am sure some of that was me.  I didn’t have the wisdom to know how to be as open to friendships.  Being open to friendship is something I only started to do when Bryon got sick.  

I followed my same social patterns in college.  There were two major groups in my college dorms.  The theater/art/music majors sat on the left side of the cafeteria and the athletic and Greeks sat on the right hand side.  There was one row of tables that was right in the middle near the salad bar and an ice cream cart.  I was friends with people on both sides and would sit on either side.  If I was by myself (something that didn’t phase me, especially after studying abroad and going to Paris by myself) and I didn’t see any of my friends, I would just sit in the middle.

When it comes to my writing and purpose, I come back to these two feelings that have plagued me my whole life.  

I have so many ideas for blog posts in my head and no idea where to start. I have so many ideas of what I want to accomplish, but I don’t know how to get there.  Now I have Paul Simon’s Me and Julio Down by the Schoolyard stuck in my head.

I think about the concept of having a niche when writing.  What kind of blogger and writer am I?  Trying to find what writing niche reminds me of my high school and college years where I was trying to find the right table to sit at in the cafeteria.  My half-marathon training has been suffering due to my poor time management skills so I am definitely not a running blogger.  I don’t travel enough to be a travel blogger.  I write about life, but I am not a lifestyle blogger.  Trust me, if you could see how messy my living room is, you would know why I don’t post pictures of my house.  I write about death and grief.  It is important for me to share that part of my story as our society has a twisted view on death and grieving and we need to talk about it.  But I don’t want Bryon’s death and grief to define me.  I am still a person who has a lot of living left to do.

I need to make a difference.  I need to help people.  

I need to talk about grief to help widows, especially young widows because the world thinks of widows as being elderly.  

I need to talk about grief to help those who have lost loved ones, not just widows, but anyone who has lost a child, family member or friend.  

I need to talk about rebuilding my life to help those whose life and sense of security  was shattered, whether it was by death, divorce or job loss.  

I need to talk about my struggles in parenting to help those who are single parents.

I need to tell my story of surviving to give hope to those who are struggling to carry on.

I need to talk about the problems in our healthcare system so people can advocate for themselves and their families.

It dawned on me today that instead of worrying where I fit in, I need to just blaze my own trail.  Not just with my writing, but in my life in general.  If I truly want to be open to new people and new experiences, then I shouldn’t be focusing on trying to put place myself in a niche or group.  If I do that, then I inadvertently narrow down who I meet and my opportunities to make a difference.  I have spent my whole life waiting for others to define the path I am to take.  That is silly because no one other than myself can know my true life purpose.  No one else can understand what I hope to get out of life.  If I wait for others to define my path, then I am limiting my potential.  

I need to blaze that trail even if I don’t know where I am going.  Besides being a wife and mother, the other two times I felt accomplished in my life where when I took risks and did something scary.  The first was my semester in the UK and the second was my years in politics.  They were the two times in my life when I felt like I was out experiencing life the most and my experiences were the most rewarding.  I pushed ahead and did things out of my comfort zone.  I didn’t let fear stop me.  I need to remember this as I blaze a trail forward.

A better version of myself

I am always wondering “what if”. What is Bryon hadn’t died?  What if Bryon hadn’t gotten sick?  What would we be doing?  How would the crisis have affected our relationship?  I think about Bryon playing with our daughter.  I think about Bryon hanging out with our friends.  I think about going to political events with Bryon and our daughter.  

Usually when I visualize how life would be with Bryon and I, I am imagining life with him at his healthiest.  I have no idea what long term effects he would have had if he had survived.  I know we wouldn’t have been able to go on a cruise (our favorite way to travel).  In fact, I would have been nervous travelling anywhere that was not close to a large medical center, let alone on a ship in the middle of the ocean.  Had Bryon survived, our lives would have been drastically different.  

But Bryon didn’t survive and our lives are drastically different.  And one of the things that is drastically different is me.

As the crisis began to unfold, I had to change.  I went from being one half of a two person team who took care of a toddler and I instantly became one person who had to take care of her critically ill husband, our toddler and myself.  Everything became my responsibility, plus I had to stay on top of Bryon’s care.  Luckily I had help.  My parents did take care of my daughter and when they had to go back to Maine periodically, friends would step up and take care of her.   Friends prepared meals and did tasks around my house, like mowing my lawn.  I remember thinking that I couldn’t wait to tell Bryon because he was going to be proud of me for rising to the occasion.  

I also remember thinking that I couldn’t wait to fill Bryon in on everything that had happened.  I filled him on some of it, but I was waiting until he got better to tell him some of the events that had transpired.  I vowed to myself that Bryon would have known everyone who helped me and our daughter.  There were certain people who should have been supportive and always had high expectations from Bryon who offered little to no support and made my life difficult but I did not tell this to Bryon.  I didn’t want to stress him out and I figured I could tell him when he was well again.  But of course that never happened.

Before this crisis, I was a very different person.  I was innocent and ungrateful.  I did not know how good my life was and I never dreamed something like this could have happened.  Through this crisis, I learned I was much, much stronger than I ever thought I was.  I think everyone has that potential for strength during a crisis, though you have to choose to be strong and not fall apart.  

I have much more confidence in my abilities than I did before.  I used to care what other people thought, but that changed quickly.  When you are a widow, people think they have a say in your decisions and how you live your life and are quick to tell you how to live your life, how to grieve, how to spend your money, how to parent- the list goes on.  I survived one of the possible worst case scenarios that could happen in my life.  I am sure I can survive anything else, even any consequences for any potential screw up that might be my own doing. (Take away point- if you feel like giving a widow any unsolicited advice, just don’t.  We are capable of seeking help and if we wanted your opinion, we would ask for it.  No ands, ifs or buts.)  

Another effect of going through one of the two possible worst scenarios imaginable is that I don’t live in fear anymore. I survived.  It’s not easy, but it’s been 15 months since that day that Bryon went into septic shock and I am still here.  I am still in my house.  I am working.  My bills are paid.  I have travelled.  My daughter is happy.  Fifteen months ago, my life crashed down and I had no clue how I was going to do it without Bryon but I am.  I miss him so much that it hurts, but I am surviving.  I don’t fear what comes down the road because I realize that things can easily fall into place and am open to opportunities.

I don’t stress on unimportant decisions.  I used to be a person that would stress about picking two items on a restaurant menu.  Now I realize that there is no need to stress about things like that because that isn’t an important decision.  I should just go with the hamburger and if I don’t like it, I will go with the turkey club the next time.  I no longer sweat the small stuff.

I am open to friendships now.  I am an introvert (though some online tests call me an ambivert which is technically in the middle of the introvert-extrovert scale) and I usually just kept to Bryon and a very few close friends.  I had a lot of walls and I never let my guard down.  After this crisis, I have learned to let others into my life.  It’s okay to need people and it’s okay to lean on them.  I have learned to embrace the love that comes with friendships.

While I am more open to friendship, I don’t tolerate being treated poorly anymore.  I don’t tolerate B.S.  If you can’t be supportive of me or my daughter, then you don’t get to play a role in our lives.  Grief is exhausting and I don’t have the energy to deal with people who cause drama and make me feel bad.  As one of my closest friends says “less negativity and more high-fives!”

But I used to seek the approval of other people, but now I know that the only people that I have to answer to are myself and my daughter.  For the first time in 38 years, I am being true to myself and I have the confidence to work toward my dreams.  To live the life I want to live.  And even though I am tired and exhausted all the time I feel like I am a better mother.  Sure, I seem scattered and forget stuff, but instead of being concerned being a good mother and appearing as such, I just focus on my daughter.  Not what others think (though I will use self-deprecating humor from time to time). I also am not concerned about being the perfect family because it’s just my daughter and me.  Now I am just concerned about my daughter being happy and I know that (in addition to covering her basic needs-very important), it is my job to make sure she becomes an independent adult and that she becomes of the best version of the person she is supposed to be.

I am a better version of myself.  The hard part of that I like myself much better now, but I would not be this person if Bryon were still alive.  I don’t like who I was then, but I would give up my new self if it means Bryon could come back.  But that is not going to happen.  I can only move forward with the life lessons that I have learned by loving Bryon and having him in my life.  I am a better person because of him.  Everyone that is in my life now knows that I am who I am because of Bryon.   In a way, he is a part of who I am now even if he is no longer here.

The last 30 hours

Saturday, August 20, 2016
New York City

I was sleeping in the recliner that the nursing staff had found.  I think they took pity on me because I was sleeping on two chairs put together.  The resident woke me up just after midnight and told me that Bryon’s numbers were looking much, much worse.  I called my daughter’s Godmother.  I was hysterical and I know I yelled at her after she asked some questions.  

I barely slept the rest of the night.

The following morning the resident came in.  She came in to tell me what I had been fearing: that Bryon’s heart was going to stop beating that day.  I remember staring straight ahead with tears in my eyes.  The resident asked me if I wanted to know what was going to happen.  Through my tears, I just nodded.  She explained to me the there was going to be a lot of yelling and everyone was going to come into the room and work on resuscitating him.  She explained that I would need to leave the unit should that happen.  I just nodded.  

I called my daughter’s Godmother who said she would be at the hospital as soon as possible. I truly don’t know how I would have gotten through the day (or really the past 15 months) without her and her fiance.

I made phone calls.  My parents were in Albany with my daughter.  I didn’t think it made sense for them to bring her down because Bryon was no longer aware and my daughter would be too young to remember.  Plus my parents are from Maine and my father hadn’t been to New York City since 1964 and it didn’t make sense for him to be driving in a city that was unfamiliar when Bryon wouldn’t even be aware.

I called Bryon’s parents and they told me they weren’t coming.  As a parent myself, I will never understand their decision.  If my daughter were in New Zealand and I heard she was dying, I would be on the first flight I could get across the world.  But we all make our own choices in life and we have to live with those choices.

I called some of my friends.  Some of them were able to make the trip down to the city that day to say their good-byes.

Specialists came in and out all day.  Each one gave me the news that there was nothing they could do.  Exploratory surgery would be the only option and he wouldn’t survive a trip to the operating room.  I overheard one of the doctors say they were looking for a Hail Mary.  I just appreciated that the doctors hadn’t given up on him, even though his death was imminent.

Saturday turned into Sunday.  Bryon was still alive.  It was my Dad’s birthday.  I wrote Happy Birthday on his Facebook wall because I knew my first call to him on his birthday was going to be telling him that Bryon had died.  

My daughter’s Godmother stayed with me all night.  Neither of us could sleep.  I was too afraid that if I were to fall asleep that that would be the moment his heart would stop beating.  I didn’t want my last moments with him to consist of me being awoken by commotion.  So my daughter’s Godmother and I stayed up all night, taking turns talking to Bryon. Obviously we didn’t know how much he could hear us or understand us or if he could hear us at all.

His vitals were falling.  His heart rate and blood pressure dropped to levels that I hadn’t seen in the five months of staring at the monitor.  His hand felt cold when I held it.  

I was talking to him.  I was probably rambling.  I remember telling him that our daughter and I were going to be okay.  Then I started rambling about shower hooks. Then, at 6:47 am, Bryon’s heart stopped beating.

Existing

I haven’t been myself for the past month.  You may be thinking, “well Kerry, you’re husband died not that long ago” and perhaps that is it.  But it’s different.

For the first couple of months of widowhood, I was in survival mode.  I was in a fog and just going through the motions of my routine.  I had spent 5 months sitting in an ICU and I was getting re-acclimated to life outside.  I wasn’t working as Bryon spent a large part of his illness at the hospital where I had worked and I could not go back.  I trained for a half marathon and binge watched the Gilmore Girls. The holidays came and went.  It was hard to celebrate but I tried my best to go through with the festivities for my daughter’s sake.

The next quarter was when the fog started to lift and reality started to set in.  I needed income and health insurance so I got a new job.  As my life started to stabilize and the amount of people around started to thin out, the reality of Bryon’s absence started to hit.

The third quarter was actually a sweet spot.  I was starting to get used to my new life and start getting used to Bryon being gone.  My daughter and I traveled to Las Vegas, Ann Arbor, Michigan and Philadelphia. I was starting to get used to Bryon being gone and I was starting to get used to my new life. I was actually starting to look forward to getting to know who I was as an individual.

But now in the last quarter of my first year of widowhood, I just feel like I am existing.  I am no longer in thick fog but I know that I am still in active grieving.  Grief is exhausting.  I feel drained most of the time.  And I feel like it’s time to tackle all the tasks that I kept putting off because they were painful.  Those tasks aren’t going away.  But I can’t seem to bring myself to call Verizon to shut of his phone.  I don’t call his cell phone to hear the greeting like Hilary Swank’s character does P.S. I Love You.  But his voicemail greeting is there.  To shut off his phone and know that if anyone calls it, they are going to get a “this number has been disconnected” message just seems to final. Like the proverbial nail in the coffin.

All around me I see all the things that I am missing.  Happy couples.  Complete families. I am no longer a wife.  I am a widow. I was called “Mrs. McKim” the other day and it took me by surprise.  I was sad that it took me by surprise.  It means my life with Bryon is slipping away.  As time passes, I feel less like the wife I was and more like a widow. I miss being a wife.  I miss being part of a complete family.  I miss being part of a couple.  Finding out who I am now seems like a chore, not something I am excited about.  I want my old life back.

The years stretch out in front of me, long and lonely.   They say it gets easier with time.  But until that time comes, it just feels like I am existing.