Difficult Days

     When my sweetheart was diagnosed with a rare airway disorder called tracheal stenosis I joined a Facebook support group filled amazing people who knew the same struggles that we were facing.   When he was diagnosed with multiple myeloma, I joined several more.   So, a couple weeks after he passed I thought that joining a support group for young widows was a good idea.   The first group I joined was terrifying and not a good fit.  There are some very heartbreaking stories of how people have lost their loved one, and it was just too much for my already broken heart.   It did help me deeply appreciate several things, especially my faith.   I'm so grateful that I know that I will see my sweetheart again.   Death is just temporary and one day we will be together again.   But for those without that belief or knowledge, death is even more agonizingly painful.  Don't get me wrong, its agonizingly painful even with that knowledge but I at least feel like I have hope.   

     I joined a second group for those that shared my beliefs, hoping for a better fit.   But found that group was much more focused on finding their "second chapter."   Definitely not on my radar at this point in time, who knows if it will ever be.   My husband is the only man I've ever kissed and my heart is content to leave it that way.   I recently came across a journal entry from my sweet husband that said "I never want her to be alone. Ever. I hope I can visit when I am gone."  Me too my love, me too!   But unfortunately I've spent more time alone in the past 2 1/2 months than ever in my entire life.   I'm grateful for the young woman who is staying with me, but she's not always here and even when she's here it's obviously not the same as my previous roommate of twenty two years.  

     I've learned that sometimes it's good to be alone with my tears, but other times the silence is suffocating.   I've tried to find YouTube playlists to help cover the silence, with only mild success.  I probably should just create one of my own as there are often songs that can take me from functioning just fine to tears in a matter of moments.    One in particular is a Disney piano list, which is relatively safe but whenever this song from Toy Story comes on, I have to quickly skip it... 

When somebody loved me

Everything was beautiful

Every hour spent together

Lives within my heart

And when she was sad

I was there to dry her tears...

Just she and I together

Like it was meant to be

     How I wish that he was here to dry my tears.   I am very grateful for the numerous other family and friends who love me, but life is just not the same without him.  One thing that I recall from one of the groups was a discussion about how long does life and grief feel overwhelming hard.    Many people said the first year was the hardest.  That seems logical to me.   But, I've learned already that grief is anything but logical.  There have been days where I feel like I'm doing OK, only to be blindsided by something unexpected that shows me otherwise.   When my husbands team made it to the playoff's, numerous people reached out to me letting them know they were thinking of me/us and that they were sure he was in heaven celebrating.   An outpouring of love, should be good,  right?  Illogically I sobbed, tears streamed down my face and soaked my chest.      When his team WON the Super Bowl, same thing, but at least time I anticipated my reaction.   I'm so grateful for everyone who is reaching out in love, it just is crazy that it accompanied with such tears of profound sadness.   Describing it to one of my aunts, she perfectly described it.  Bittersweet.   Grateful to be loved, but wishing to be celebrating with the one I love.  You know that baking chocolate that you found in the fridge as a kid and thought you would  eat.   Yup, a lot like that.   It needs to be mixed with other ingredients to make it palatable, I just haven't figured out what those ingredients are.   

     In the discussion of how overwhelming, several also talked about how the second year was even harder.  Ugg... yet another thing I don't want to think about, but have come across more than once.   I'm still in the "surviving a day at a time phase" but trying occasionally to be prepared for difficult days by looking ahead.   When visualizing the coming year the thought of "landmine days" came to mind.   So when I came across a blog called Refuge in Grief that had this map I really liked it and it gave me more to think about.   I definitely relate to the mountain of tissues and waterfall of tears.   I think if I were drawing it, there would definitely be more than two landmines.   

 

     

     I've recently survived two of my "landmine days"  the Super Bowl and Valentine's Day, but having the two together was just too much.   The emotional strain manifested in a physical way with debilitating ocular migraines.    I grateful that somehow survived that week and this week as well, but this weekend I've just felt extra broken.   I've never been the best at asking for help, but it's even more difficult to reach out asking for help when I have no clue what, if anything could help me.  I've spent the weekend in my pajamas on the couch.  I've sat on the floor of the shower with water and tears streaming down my face.   I've prayed.   I've tried to study and learn and read things to find comfort.   I've felt broken.  But tomorrow is a new day.   Wish me luck.  

Morning Mourning

     As slowly the numbness that helped me get through these past difficult weeks, I feel there's been some agonizingly sad moments.   The most difficult moments each day seem to most often be first thing in the morning.   That moment where I wake up and realize it wasn't just a bad dream.  Probably a bit like the movie Groundhog's Day.    I think they are extra challenging, because sometimes they were often some of the best times of the day.   

    Two and a half years ago when my job changed to work from home, mornings became a bit more magical.   Since I didn't always have a specific time I had to be to work, sometimes I could stay in bed for just a little bit longer.   We once heard these lyrics one day many many years ago and they resonated with us "If I lay here, if I just lay here, would you lie with me and just forget the world?"  

 

      Occasionally there was a golden moment in the morning, where I would be only half awake for an hour or two.   Awake enough to snuggle up next to my sweetheart, but not enough awake that my brain was thinking about all the things that needed to be done.   Thoughts of chemo, medications, appointments, errands, work, dinner... were held at bay.  It didn't happen every morning, but when it did it was bliss.  He would usually softly ask, often multiple times, for "five more minutes" and when possible I of course would be happy to comply.  These mornings were magical and very recharging for our souls.   

     One morning the week our lives changed forever, I woke up much earlier than normal.    I carefully snuggled up next to him in hopes of falling asleep for a couple more precious hours of sleep, hoping not to disturb him.   However, I was unsuccessful and he woke up.   I apologized for waking him and he gently replied with something like "Never apologize for waking me up to snuggle.  There is no better way to wake up."   Little did I know that just a few days later, he would be gone.   

     I find I deeply am mourning the loss of those magic mornings.       

     Now each morning, the first thing I often feel when I wake up is this indescribable feeling in my heart.   A horrible ache as my heart reminds me of what once was.   A reminder that it's trying to recover.    

  

      In the past week my mind has played cruel tricks on me.   One morning I thought I heard him quietly walking around in the bedroom getting ready to come back to bed.  Today I woke up and thought his hand was on my back.  It's hard to get up and face the world as it is, but extra challenging to do so on morning where your mind is playing tricks on you.   

    The movie Groundhog's day ends when Phil finds finds love.   Ugg... let's hope that's not the solution for my difficult mornings.   Because that sounds terrifying...

    

For another interesting read.  

In the Morning in the Mourning

The lyrics above are from a Snow Patrol Song called Chasing Cars

       

Never Prepared

       I don't remember when, but early on in his cancer diagnosis I came across this quote.   I printed it and hung it on the mirror in my bathroom.   Death was something that was on our minds regularly, but talking about it and preparing for it were challenging.   We tried... we met with the funeral director to start making plans.   But then, well...  life happened.  Specifically, trying to stay alive.   Trying to battle cancer and still have time or energy for other things was tough. 

      Then this fall again, when he faced death in the face again not once, but twice.   In a short time period we again realized how important it was to talk about and make those difficult decisions.   While in rehab on evening we spent a a little while talking about what he wanted at his funeral.  I jotted things down on a digital post it note and we planned to talk more in detail about things after Christmas.   It was a very small list which included songs, pallbearers, speakers and stormtroopers.  But having walked away from the edge of death, we thought we had more time.   But all we had was five short weeks.  I'm very grateful we had those weeks.   But those five short weeks were filled with building up the strength to walk again.  

     In all of the discussions we had over the years, there were many things to talk about.   Some of the most difficult were talking about not his death but in talking about me and the life after.   For both of us, it was difficult to imagine what that would look like.    The thought of me being alone was agonizing for both of us.    The possibility of me finding love again and marrying was difficult for either of us to imagine.   It was too hard to look past that.  

      Now here I am on the other side in the reality that we hoped would be many years still away.   While there are things that may have helped to make this easier, grief is hard.   That doesn't even take into account all of the other seemingly mundane daily tasks that must take place.   In a support group I read of a widow who had been very prepared, everything that could be was in place.   But she struggled because she wished she had things to do to distract her from the pain of her loss.   It really is a situation where you can't win. 

     Sometimes the difficult things come when you expect it.   Such as the necessity of getting in an elevator to leave the hospital the night he passed away.  That was excruciatingly difficult.   Clutching my pillow and focusing on placing one foot in front of the other as I walked out of the hospital without him.  The cold winter air was bitter, and the gut-wrenching feeling as I looked up toward the windows where I knew he was, will forever be a part of me.

      But many difficult things come when you least expect it, often with the most mundane of tasks.   I wasn't prepared for needing to check out the box for widow when my work had a new payroll system, or the fact that I needed to list an emergency contact other than my sweetheart of the past twenty two years.     After years of battling cancer, and picking up prescriptions for him I struggled to think of my birthday instead when picking up a prescription to help me sleep.     

     How and when to remove someone whose life has been intertwined so beautifully with mine is so difficult and often comes in unpredictable moments.   Some days it's hard just to see his name or a photo of him, a sad reminder that he is gone.   Other days pictures of him make me smile.   We often ordered groceries and fast food on an app, with both of our names listed together.   When placing an order at Chick-Fil-A one day, I updated the app because I knew that saying his name to the attendant in the drive through would make me cry.   But fast food is one thing and that choice was mine.   Often the choice is made for me.   I wasn't prepared to login a church app and notice that his name and picture was no longer next to mine in the directory.   That was hard. 

      So, all things considered could we have been more prepared.   Yes.   But honestly I don't know that you can ever really be ready.        

    

     

     

    

The Year My Brain Broke

      One thing about my sweetheart that I love was how much he always protected and respected me.   When we were dating, he learned that swearing really bothered me.   I don't think he used curse words often before he met me, but out of respect he not only avoided them but also expected the same of his friends.    If he was gaming with friends or family, he always asked them to be mindful of their language.  He became super sensitive to it as well and would often hear swear words in songs or movies more than I would and would turn them off.   

     One memorable day before we started dating I was working temporarily at a theater about thirty miles away.   I wasn't working the next day but had left something there that I shouldn't have.   It had been a tough week and if I recall I had been pulled over because my car had lights that would turn off whenever you turned on the turn signal.   When I stopped at the theater back home, he was working and offered to drive me back out to retrieve the item.  I took him up on the offer and we drove back out.   On the way back home I was venting about the week I had had and was appalled when "It's been one &%$ of a week."  I immediately freaked out which brought it even more to attention.   I believe he thought it was super cute and it made him fall in love with me even more.    Also during that trip he also asked me if he was too blunt in asking me out.   His request to go see Muppets from Space at a competing theater had seemed strange but since we had had a conversation when we first met about how we would never date co-workers I wasn't sure what to think.   I had replied "No thank-you, that movie looks dumb."   Oh my, how I miss those days of our early relationship when life was simpler.

      Then last year happened.   I can't recall when, but in the thick of our trials when things were impossibly difficult, my brain broke.   Curse words became the first that come to mind.   I still don't like swear words, but when people would ask how things were going, I have to carefully watch my tongue so that that the words in my head wouldn't slip out.  It started out as just an occasional thought.      Then in one moment, when two people kneeled in front of me and told me the horrible news that I never wanted to hear, not only did my heart break but my brain cracked a bit more.   Now it thinks swear words on a regular basis and I hate it.   It's not me.   

       I'm also going to allow myself some grace and recognize it's a reaction to what I've been through.  

     "Grief Brain affects your memory, concentration, and cognition. Your brain is focused on the feelings and symptoms of grief which leaves little room for your everyday tasks."       Tensie Holland

    Now here I sit on the other side of the year that broke my brain, and the moment that broke my heart.   There have been many tender mercies that I have tried to recognize, but one thing that has been a struggle is simply the weather.   The darkest days of my life were literally the darkest days of the year.   Slowly, little bit by little I know the days will warm and the light will linger a little bit longer each day.   I've heard it is the same with grief.   The quote above from Tensie is an article I found this morning that promises that there are bright days ahead.  

"As you heal, you will find that your thinking is clearer/ sharper and your judgement becomes more reliable and you can accomplish more. It is important to take your time, baby steps, as they say. Slow down and take care of yourself."

    Good news... I'm already doing some of the things that she suggested.   

"Journaling is an excellent form of therapy and will help release the many feelings you are experiencing."  

      

    

The Void

     During the funeral,  the funeral director (who is also a good friend) would turn to me and ask "Are you Ready?"   I remember wanting to scream "No, I'm not ready for this", but knew it wouldn't make a difference.   So several times I just kept going.  The first time when his casket was wheeled from the visitation room into the chapel for what ended up a being beautiful service.   Then again at the end, when it was time to leave the funeral home for the cemetery.   I think then one more time at the gravesite.   Such a difficult question, is anyone ever ready?    

     Over and over for that past few weeks, I've faced moments where I had to move forward whether I was ready or not.   Last week was another big one that I dreaded.   I returned to work full time.   I recognize that one day the structure will be good, but going back to an e-mail box with 500+ emails and huge list of things to do was tough for my brain.  Returning to "normal life" was tough in and of itself.  I tried to play instrumental music in the background to help distract from the quiet, but it often would play songs where I know the words and tears would stream down my face.   I'm very grateful that I'm working from home as I know that tears can be healing but crying with an audience isn't always easy.  

     However, one huge blessing last week was in the form of a sweet young woman.   She has been part of our life for the past five years and would come over and clean our kitchen.   It was such a burden lifted.    I was blessed to spend most of last month with family, who have been and will be a huge support.   But last week as I faced being at home... alone, I wasn't sure what to do.   But she was an answer to prayers and reached out asking if I'd like her to come stay.   The day I returned home I spent time with an amazing friend who also has had a difficult year.   As I turned into the alley, my heart sunk when I realized I'd need to shovel the snow.   But Chris already had that taken care of as well.   Years ago some neighbors asked him if there was anything they could do to help.  His reply... "Do you think you could keep the driveway shoveled when it snows? I want Michelle to be able to come and go from work." When I figured out which neighbor who had performed the sweet act of service their words touched me.   "He was so in love with you and concerned your day to day. We will keep it up for you and in his memory as often as we can."  There have been numerous friends and family who have reached out and helped me feel no so alone.  

    When I somehow managed to I survive the week, I got to Friday and realize ugg... what the heck am I going to do this weekend.   I used to look forward to the weekends as they were the best times to be with my sweetheart.   But now, the are yet another void to be filled.   Luckily I reached out to good friends and they helped fill my time.  

     This week has been filled with it's own ups and downs.   I recently started sleeping with a weighted blanket.   This morning when I woke up, it was bundled to the side of me instead of falling off by my feet how it normally does.   With it right beside me, I woke up thinking it was my sweetheart snuggled next to me and for a brief moment that the previous weeks were just a horrible nightmare.   But then reality sunk in.   Waking up to the reality each morning that he's gone is tough.   

    This week I've thought a lot about where I am now and trying to understand the process of grieving, mourning, or lamenting.  Trying to learn what each words means and also what to expect.   Too deep of a topic I think for my weary brain at this point. 

     I came across this quote tonight and love in how it explains grieving.   A month ago my life completely shattered into pieces.   Along with it my hopes, and dreams as well as worries and fears for the future.   Now I face a blank slate for a future.   It's pretty much terrifying.   A journey of self discovery to figure out who I am now that I'm a no longer a wife or caregiver to my sweetheart.   Who the heck am I without my better half?   It's going to take time and patience, that's for sure.   

    Right now it's too hard to think much beyond tomorrow.  So the main thing I'm focusing on is patience with myself.   Rome wasn't built in a day right? 

     

    

Acquainted With Grief

       I started a blog many years ago, written by me and occasionally my sweet husband, Chris.    After a Facebook post where I declared we had survived the "longest day ever" we faced many more long such days, weeks and months.   The blog became a way to communicate to friends and family about the challenges that we were facing.   At the time it was an ICU stay for tracheal stenosis (a narrowing of his airway)  which was an unexpected result of a surgery for his brain tumor.    He ended up needing a trach during that stay and was told he would likely never speak again.    But, that wasn't the end of our troubles.   Five months later he was diagnosed with multiple myeloma, a rare incurable blood cancer.   With that came kidney failure and dialysis, neuropathy, septic shock and more.   It brought us closer together than we could have ever imagined.   

     Then a month ago, we were just getting readjusted to life back at home after almost two months in the hospital.   He had been released barely able to walk, and had overcome so much in the weeks since returning home.   He had progressed from needing a walker, to a cane, to walking on his own in such short time.   Life for a moment was good.   One morning when I woke up early and I couldn't sleep, I snuggled next to him waking him up.   I apologized and he tenderly told me not to, it was the best way to wake up.   But then everything came crashing down.   He was admitted to the ICU with a cold and a day later, he passed away.  Of a common cold!       

      I don't know how I've survived the past month, but somehow I have.    I've taken things one moment at a time, struggling to think beyond the next day.  The first night I fell asleep to a TikTok of his, grateful to hear his voice.   The first two weeks were busy.   I visited the funeral home, greeted by friends (and former neighbors) who help people through that difficult step in life.   I picked out a casket, burial plots and pulled together a lot of details for a beautiful service.   I was able to put together a tribute of his amazing life and somehow myself survive the visitation and funeral.   I've been comforted by numerous family and friends, who also are mourning the loss of a son, brother, nephew, uncle, friend.   Hearing from others the difference he made in their lives gave me greater appreciation of the man I love.    

       In all our marriage, we've spent only a handful of nights apart.   We married when I was young and have been inseparable ever since.   I've been blessed to be by his side at nearly every doctor visit and hospital stay.   We are one and now he watches over me from heaven.   My heart aches to hear his heart, my ears long to hear his voice, my skin longs to feel his touch.   I miss him SO much!   I love him so much.   

     Christmas Eve marked three weeks of his passing.   I had known that Christmas Day was going to be difficult, but was unprepared for the heartache of thinking of our last moments together.  People have said that the year of "Firsts" is going to be difficult, but I wasn't prepared for just how difficult it would be to think of the "lasts" as well.  As I think about next year I just feel lost.  

       Not only am I grieving the companionship of my sweetheart, but suddenly I've gone from years of not enough time in the day to accomplish all I need to do, to days and nights which seem endless.   No longer will I need to get him to medical appointments or manage his medications.   The nurses, doctors therapists, and pharmacists that have become family are suddenly gone from my life.   Replaced instead, for the time being, with countless tasks of figuring out how to wrap up all of the loose ends.     Behind me I've completed some difficult hurdles like returning home, sleeping in our bed, being alone for periods of time.   Even simple tasks like driving in a car are difficult.   I often look over at his empty seat, stick my hand out and imagine that he's there holding it like he always would.   All things considered, I think I've come along way.   But ahead there's an enormous challenge of figuring out how to survive on my own.   

     For New Year's I was blessed to spend the weekend with his thoughts.   For nearly 30 years I have been written in my journal each night, and for several years I convinced him to do the same.   There are many tender entries, like this one.   He was going through extreme pain and facing his own mortality.   But as always, his thoughts were filled with concern and love for me.   It was difficult for us both to even think about, let alone talk about life apart. But somehow in the quiet moment of writing in a journal he was able to put his thoughts in words.   

    I've realized now more than ever that writing is therapeutic for me.   It's a way that I've been prepared to make it through this difficult time.   I knew when he passed away that I wouldn't continue the blog.  But after much thought I decided that I would start a this one.   For those who choose to read it, a glimpse into a life of grief and mourning.   But for me, in the future, a way to look back of how far I've come and what I've been able to overcome.  My uncle caught this picture of me at the visitation.  Alone for a moment in my thoughts and sorrows.   When I look at it, I see the face of someone who is acquainted with grief.   

     However, he also took this picture, just moments apart.  My trademark dimples are there, and I'm smiling.   Today marks one month of his passing and like many other days, it was tough.   The past month has had tears, lots of tears.  There have been difficult nights and long days.   But along the way there has also been light and hope.   Moments where I could feel him near.   Such gratitude for my knowledge that we are married for eternity.   Appreciation for the light and love that he brought to my life.  Many moments of reflection of the twenty two wonderful years of marriage.    

     So while the future seems difficult, an entry that he wrote in the days prior to his brain surgery, almost eight years ago, he leaves me with instructions.   "I do expect her to be happy".   That is a tall order, and one that will take time.  There is no doubt about it, this year is going to be difficult.  But knowing he wants me to be happy gives me guidance in what to look for.