Your Light

     For New Year's this year, I spent the evening reading journal entries from my sweet husband.  Simply put, they were amazing.   What a blessing to have a glimpse into his mind and heart.   A chance to know him even better than I already did.  His love for me very apparent and tenderly interwoven into the difficulties he faced.   I was able to publish them into a book which has sat on my coffee table.   As I thought about what to put on the cover, I first thought about "Fight Forever Guardian" which is a quote from one of his favorite video games and a character called Shaxx that became his cancer motto.   But I wanted something that represented his entire life, not just his battle.  I searched through different quotes from Shaxx, and the perfect one was found.   "Good work guardian, your light is Strong."     

    I spent time on his birthday reading that journal, as it felt the best way to feel connected to him.   I cried, I smiled, I even laughed.   So grateful for his humor, his love and especially his light.   He put up with an immense amount of pain and trials to fight as hard as he could to be with me as long as he could, and along the way he faced challenges that many can't imagine.    Even I, who was by his side.   Here is an entry of his from May of 2015.  It's incredible to me that this was two years before he was diagnosed with cancer.   

"Took Michelle to work and then relaxed and tried to live through a dark moment.   That is when I realized it was just a dark moment.   Nothing more.   I now knew how to tell Michelle what I was going through.   She needed to know what last night for what it was.... just a dark moment.   I will have those.   And I have no description for them.   But now I know.   And She knows.   And things are okay.   I love her and she knows."   

     The phrase "I love her and she knows" felt especially profound and touched my heart.  He undoubtedly faced more difficult and dark moments.   But his light survived.   Good work, guardian.   

     

     So as the weather turns to fall, I've also thought about two events we have been able to participate in that are very symbolic with light.    He had the blessing to work for an events company called The Lights Fest.   The put on amazing event (think Tangled) where lanterns are launched into the sky.   One of his friends from there came to visit me this week.   Drew and I had an amazing discussion.   The genuine concern that he had for me was so touching.   Chris sure did know how to pick friends, as I've been blessed by several who check in on me and offer help and support.   Chris and I were able to attend the event three times.   Once in Mesquite, another in Eagle Mountain and another in Tooele.   Each time they treated Chris like a VIP and made special arrangements to make sure we were comfortable.   

    

     As well, the year after he was diagnosed with Myeloma we were able to attend an event called Light the Night.   It's put on the the Leukemia and Lymphoma Society.   They are a non-profit who raise money for research and help patients receive treatment.    They were of great help to us.   At the event each person carry's a lantern which represents if they are walking as someone currently battling, someone supporting or someone who is walking in honor of someone who has passed.   

      For those in Utah interested in attending either of these events here are the dates.   LLS is free, but it is a fundraiser if you want to raise funds to help fight blood cancer.   For those outside of Utah, both events also are available in other states.   LLS also has a virtual event in November.   For me this year the memories are sufficient, but perhaps I'll go in the future.  

     

       

September 16th, 2023 - The Lights Fest

October 14th, 2023 - LLS - Light the Night

One Less Day

      Well...I survived a difficult summer, which unfortunately was harder than I thought it was going to be.   Which makes me even more nervous for the coming months.   I've reached a time where the memories of the difficulties of last year are intertwined with special days.  

      This week is my husbands birthday.   Oh how I wish he were here and we were celebrating.  However I can't help but also remember the events of last year.   His family in Montana and their efforts to fulfill his birthday wish by figuring out how to ship his favorite homemade enchiladas.   Early morning assistance from a friend and eventually emergency personnel to help him up from the floor.   A sweet niece arriving with another birthday request of homemade macaron's and a visit from his nephews.   Followed the next day by him pleading with me to call 911 as he crumpled to the garage floor.   Several of the same firemen and paramedics arrived and he was transported the short distance to the hospital, only to be life flighted shortly after to the main hospital.   Sepsis was terrifying but it was only the beginning of such difficult things to come.  Just as with the difficulties of his birthday, I'm trying to remember some of the tender things that happened as well.   To acknowledge the good and the bad, because they existed, forever intertwined together.    

     Birthday's always mark a the milestone of being another year older.   But even though it's his birthday, he won't get older this year.   

     My sweetheart had a brother pass away unexpectedly one cold January, 16 years ago.   A short time after his brother passed away he figured out precisely how old his brother was when he passed away, including months and days.   His oldest brother died at the age of 38, 3 months and 9 days.   He then did the math and figured out on what day in his life he would have lived longer than his brother.   Which occurred in December 9th, of 2012.   I often think of sorrow of his parents, who have had to bury two children.  I also think of his siblings who have lost two brothers.   Nieces, nephews, cousins, friends.   I like to think that he touched a lot of lives.   Loss is painful, but it's different when it's after a long life.  Mourning the loss of a life cut short, adds a different depth of sorrow.    

      He lived almost exactly 10 years longer, passing away at 48 years, 3 months and 3 days.  Ten years longer, but still much too young.  He found a song called "Dying Young" by Rob Thomas after he was diagnosed that we listened and talked about a lot.  We often discussed the question of... "At what age is someone no longer considered as dying young".  We never did come up with an answer.   Just as when you were a child and anyone a decade or two older than you seemed OLD.   It seems dependent on your current age.   He died way too young, and I feel way too young to be a widow.   

      I realized this week that I'm the age the he was when he was diagnosed with cancer.   A realization which hit really hard.   I know he felt much too young to be diagnosed with cancer, but even while he struggled with that, he was thinking of me.   

       With his birthday this week, I've struggled with what to do.   It's not for a lack of trying, just nothing has come to mind.   I want him to be remembered, but my heart doesn't feel like celebrating.   I've taken time off from work so my plans are to just do whatever feels right.   It helps to know I'm not the only one who will be thinking of him this week.  I've requested a couple things to other people, which has given me some peace.    The greatest gift I can think of is the gift of memories.   I likely will spend time reading his journal and looking at pictures, thinking of the wonderful life we had together.   While I'm certain they would make me cry, if there's anyone reading this who hasn't shared their thoughts and memories, please share.   I'm still collecting and eventually want to print them into a book.   

     Happy Birthday my Archangel.   

     

  

Golden Handymen

      A couple months ago a read a quick article about the needs of a widow.   One of the top things it listed was a handy-man.   It talked about how they were worth their weight in gold, and I completely  understood.   At that time, my toilet which had been slowly running  for a while.   My attempts to fix it were unsuccessful and I had made the problem worse.   In the past my brother in law from Montana has often come to the rescue, including lovingly remodeling our bathroom to make it more accessible when walking, standing and stepping were too dangerous.  Just asking him to help me know what parts to order was overwhelming and had me in tears.   Knowing I was in over my head, I was trying to decide who to ask for help with a neighbor also named Andrew offered to come help.   He not only fixed my toilet but a few other things around the house.  

       This week two neighbors came to the rescue, fixing something that has had me worried for at least a couple years.   Every time I would see it I knew it was something that I needed to get fixed and I'd tried to think of how to make it happen.   It was clearly something above my skill level (which isn't very high).   A board had warped on two different sets of windows.  Steve and Phil came and replaced the badly warped pieces.   One had become a shelter for spiders, ewww...   It took them a couple hours and it looks so much better.   However it's the peace of mind and one less worry on my plate that means the most.

      I know not everyone is quite so lucky to have a pool of good friends, family and neighbors.   I'm grateful for the many people in my life who help make life a little better.   

My Sunshine

      I've decided to take a break from thinking and writing so deeply about grief.     It's hard enough to live through it without constantly trying to evaluate how you are doing.    Writing has been helpful, but  takes a lot of work.   So instead today I thought I'd share a memory.  

     In 2017 we spent the first time in an ICU when we finally were able to get help for his airway.   It was a insanely difficult and we're lucky he survived.   While he pleaded with me prior to the first surgery to not allow them to place a trach, in order to be able to leave the ICU it ended up being necessary.   When the doctors told me that was the next step I was worried how he would take it.   But he had learned that being intubated, restrained and on a ventilator was worse.   They told him he likely would not be able to speak and the though of never hearing his voice again was hard.   But he proved them wrong and taught himself to speak.   It was a lot of work and often wore him out.   

       Sleeping through a plastic piece in your throat and on a ventilator at night, we spent most (if not all) of the summer sleeping on our couch.    As we would go to bed at night, he one day started singing to me as we would go to bed.   

You are my sunshine
My only sunshine
You make me happy
When skies are gray
You'll never know, dear
How much I love you
Please don't take
My sunshine away

 

    He would often change the lyrics up, my favorite one being "You'll never know dear, how much I love you, because I'll tell you everyday."   He was a sweet and tender man, who was never afraid to show his love.   Those who would spend time around us were witness to it as well, some would roll their eyes and complain that we still acted like newlyweds.   It brought tears to my eyes this week when my aunt Roxann talked about our love this week it reminded me of a card she sent us on our 20th anniversary.   She said "I admire both of you so much and I think you have a wonderful loving relationship.   You each strive to do all you can for each other, you are very selfless.   If I had been able to find someone to marry I would have hoped to have the kind of love you have."

     Looking up the lyrics today I discovered there is a second verse.      

The other night, dear

As I lay sleeping

I dreamed I held you

In my arms

When I awoke, dear

I was mistaken

So I hung my head and I cried

I miss my sunshine...

The Locked Door

     I was fairly young before I recall my first experience with death.   My paternal grandfather passed away when I was 10.   I was young and didn't really comprehend.   A journal entry of mine expressed sadness, but also excitement about being able to be out of school.   I remember small pieces of the funeral, including a song a family friend sang called "The Garden."   A couple years later a classmate name Yoshi Suzuki was killed in an accident in his backyard.   We weren't super close and I don't recall going to the funeral, but I've thought of him over the years and how tragic it was to die at a young age and of his family.  

      Just a couple weeks after my sixteenth birthday I remember bouncing up the stairs.   Summer was just starting and things were good.   My dad was sitting on the stairs with the long telephone cord trailing behind him.   Shortly after he called us into the formal family room which was only used on special occasions or for visitors.   Something was wrong.  I remember taking sitting in folding chair that was just inside door instead of on the couch.   He then told us that my good friend David had passed away while hiking in the Grand Canyon with his scout troop.   Our families were close and always spent Easter together camping.   His death hit hard and I remember how hard it was to accept.    I remember crying regularly throughout the next year and carefully trying to write down every memory that I could think of.  I also thought a lot about his family and how much harder it was for them to lose a son and brother.   The day of his burial was memorable, but I also remember the peace and assurance I felt that I knew I would see him again.   After the graveside service I remember walking behind some others (I believe some of his relatives) who were distraught and inconsolable because they didn't believe in a life after death.   I remember being was profoundly grateful for my beliefs.   I felt such confidence in peace in what I knew.   I would see him again one day.   Even so, his death hit me hard.   I've thought about him a lot over the years.   Of the experiences and milestones that he missed out on and the opportunities of memories lost.   Wondering how his life would have turned out and the things he would have accomplished.   So many questions that will go unanswered.      

   

     After such a profound experience at the age of sixteen, I thought I knew.   So, I was completely taken by surprise when over the past few months I feel like that confidence I had so many years ago vanished, seemingly overnight.  Plunged into a darkness I did not and could not anticipate.  I went from wondering what heaven was like and very cautiously trying to learn more, to feeling like it's all in our heads.  Does God even exist?  Or is it just some fantasy humans concocted to help us feel better and cope with death and the confusing world we live in?  

     So many others talk about the countless overwhelming experiences of peace and comfort after the loss of a loved one.  But I have not been so blessed and fortunate.  Instead I've been given silence and darkness...  and can't help but wonder... What have I done to deserve this?   I try to grasp onto any moments where I've felt that peace, but they feel like sand slipping through my fingers.   

     When I came across this quote from C.S. Lewis it described precisely how I felt.  While I wish no one had to experience the pain of losing a spouse or loved one, there is some comfort in knowing I'm not alone.    That someone who is clearly much older, experienced and wiser than I was plunged into a similar darkness after losing his wife of four years.   The quote comes from the book Grief Observed, one day I'll read it and find out more of his journey. 

    So that was a couple months ago... how are things now?   I don't know.   It's been a struggle to acknowledge and put into words how I've been feeling.   Plus I've just been trying to survive, so I have tried to not to think about it too much.   Not always successfully.   I still feel lost in the darkness, but it's not quite the same as it was in June.  My prayers still feel unanswered and I often wonder just who is in charge of chaos that is my thoughts.  

     Unfortunately July was also a difficult month for my parents.   My Dad was hospitalized with internal bleeding and needed five units of blood.   He's lucky to be alive, although recovery is a slow and frustrating process.   My mom said "Sometimes it's so hard to understand why this test has to be so hard."  I agree, it often feels so impossibly hard.   

 

   

EMDR

      I don't have much to say today.   June was a difficult month.  July luckily has been a little bit better, but August is peeking it's head around the corner and frankly I'm terrified of the months ahead.   

     This week I met with my therapist again and did my first session of EMDR.   It's a type of therapy that helps your brain process trauma.   I honestly don't really know a lot about it.   I first heard about it six years ago just after we had spent our first visit in the ICU.  A woman in our church, who happens to be a therapist, was substitute teaching with me the cute little three and four year old kids.   I told her a bit of our experience she suggested that EMDR therapy would be helpful.  We tried to get in to see her, but then life got even more difficult.   

     I found this quote a while back that I think describes  my situation pretty well.   We went through some intense stuff and grief especially of a sudden loss is also very traumatic.   

      Trying to protect me, my body has surrounded me in some pretty serious armor.   

     It's why seeing pictures of him and our time in the hospital can  instantly bring me to tears.   One day I hope to be able to see pictures of him and not cry.   

      But it's going to take time and a lot of patience and hard work.   Ugg...  

       

       

Heaven is...

      My silly brain.   It struggles sometimes do the simplest of tasks, yet wants and often prefers to try and answer life most difficult and unanswerable questions.   Ugg.... I can't get it to answer "what to eat for dinner", but instead it wants to try and answer ...."what is the meaning of life?"  Over the past several months I've asked several people the question "What does heaven look like?" and it's been interesting to hear everyone's response.   They have been quite varied, but here are a few of them.  

Overwhelmingly Beautiful

Very White

Green Grassy Hills with Picnics

Gatherings of Friends and Family

      For some reason for me, the movie that comes to mind is one called Defending Your Life, which I haven't watched in ages.  I don't think it's accurate where everyone is there to be on trial, but essentially I picture a large city where everybody has a place to be and things to do.   Where there are friends and family to be with, things to enjoy, but also things to be done.   People will go about their tasks, which often are varied.   Perhaps going to places of learning or beautiful concerts, but also involved in the details of what is happening here on earth.   Perhaps there is a place for all departures and arrivals.  Perhaps there is a big office building where people go to help with answering prayers.  All while surrounded by beautiful plants and flowers.   However it's not all some giant city like the planet Coruscant in Star Wars (had to google that, my Star Wars loving husband could have answered my inquiry in his sleep).   But also has beautiful places where one can go to be in nature.   

     Not just wanting to answer what it looks like I've also pondered a lot of other questions.   Like... 

• What do they do all day?
• Is there day and night?
• Can they sleep?   Do they?
• What does time feel like?
• Can they talk?  Or do they just by reading minds?   
• Are famous people who were famous on earth still famous or just normal?
• Does everyone look the same age?
• Are all angels skinny?   (We do talk about spiritual giants...)
• Do they celebrate birthdays, deathdays, holidays?
• Are there seasons?

      One of our good friends recently said "there better be golf".   Hmmm... I never thought of that.  Another friend said "I know our boys are up in Heaven having game night like all the time".   I had not thought of that either, but video games were a huge part of our life together.   Because of video gaming, my husband had friends from around the world.  

     The thing is that "heaven on earth" is different to everyone here, so it likely is there.   Each of us is unique in what that definition might be.   I think the one unifying thing is the loved ones and friends.  I'm still no closer to definitive answers, likely never will be.   But I do know one thing.  Being with my husband was heaven on earth, so if there is a heaven.... it is where my husband is.