Story of my life these days...

This is surely how I feel treated these days.  Not by everyone- some people still get it.  But by most of the world- friends who aren't close friends, co-workers, people you sort of causally know who know your story- this is how things usually are these days. I guess I do a great job of putting on my brave face or keeping myself together, and so people think you are always doing well.  But that is not true.  I am not OK sometimes (maybe more than sometimes...) and I am most definitely suffering.  The holidays are already hard and we haven't even gotten to them yet.  Meanwhile the anniversary of his death is looming over me in January.  The date just sits in my mind, like a mountain...overshadowing so much, daring me to think about it too hard so that the tears start falling in hot rivets down my face.  And so, too often, I pretend like thing are OK.  I refuse to let myself go to certain places in my heads during certain times of the day.  I avoid things that I think will be too emotionally painful. Then when I'm sad...I'm very quiet.  And so people think I'm OK.

Looks can be deceiving, people.

Anniversary

Today would’ve been my 9th wedding anniversary with John.

Heartbroken doesn’t even begin to cover how I feel today. I miss him so much, I grieve for him heavily and I grieve for our children, who miss him but have no real clue on all that they are missing out without their father, knowing one day it will really hit them what it meant to lose their amazingly loving father at such young ages.

I’d give anything for a few minutes to just look at his face, or talk to him.

My poor John, how I wish you were still with us…more than anyone will ever know.

(Almost) a year ago...

Isnt that the truth?

Tomorrow marks one year since the surgery John had on his arm for his misdiagnosed "pinched ulnar nerve" (which turned out to be a malignant peripheral nerve sheath tumor...), andon 11/3 it will be one year since his diagnosis.

I'm acutely aware of the reality and severity of my situation, but this tiny little part of my brain still has trouble coming to terms with the fact that the "movie reel" of those four months that continuously plays in my head is, in fact, REAL.  

John was misdiagnosed, not treated for cancer for a year until it because so bad it could not be treated, and then in less than four months, he was gone.

No one could've ever convinced me this where where I would be a year later.  And yet here I am.

It has been 8 months and a few days since John has passed.  Time has not made things easier.  People tell you that it will, but people lie.  I wouldnt call this situation "better"- I'd call it "different".  You become more used to what happened, you accept it more, you carry on with your life as best you can....but no, it doesnt become "easier" to lose your husband and the father of your children.  Its a situation I can never fix and it bothers me to no end that no matter what, I never, ever will be able to change the outcome of what happened to John.

I miss you tons, John.  More than anyone would ever know.  Not a day goes by that I dont think of you, miss you, or wish you were here.  In fact, sometimes its multiple times a day.  Sometimes it feels like its all day.

I wish you were here for me and more importantly, I wish you were here for our kids.  

6 months

Six months.

Six fucking months since John died. I miss him so much that I cannot accurately find the words to describe it.

Its probably an understatement to say I am not doing so well today.  The feelings of dread and depression have been slowly sneaking over me for a few days before this, but today it has hit me very hard.

I really cant believe its been 6 months.  6 months without seeing his face, hearing him speak (aside from those books that he recorded for the kids before he died...but they sound a little "off" from what I remember his voice being like....almost like listening to the voice of a ghost), hear him laugh, talk to him.  Its still so surreal sometimes.

The pain still rips me apart. I'll have some periods where it wont be so bad, or even...alright.  Then, like a freight train, some sort of "date" or "anniversary" of something comes along and just knocks you back down again.

The kids don't realize what day it is.  In a lot of ways I am glad they are fairly insulated (most likely due to their age- its a double edged sword- they're saved a lot of hurt bc they're so young, but they're missing out on so much bc he died so young...) from all of these things.  They don't remember that he died on a Thursday, so a Thursday is just another day for them.  They don't remember that it was 1/31 when he passed and so they don't even connect that today is 7/31 and what it means.  It helps that they don't have to suffer these days like I do, but at the same time...

I don't want to be suffering either.

24 weeks

Yesterday made 24 weeks since John passed away. In 12 days it will be the actual ‘6 month’ anniversary of John passing away. Funny how that week/month thing works. Both days are significant, either way.

I spent the day very busy with school registration for our kids, but I was not remiss to be acutely aware of what the day was. Being so busy helped it not be as hard of a day as I expected it might me but it still was sad. I had to, of course, talk about it during registration when you’re confirming the parent information. Luckily for me (insert sarcasm here…) the lady helping me was also a school counselor in our district, so she started to asking me how I was doing, telling me how sorry she was, etc. I always appreciate the sentiment, of course, but  I probably would’ve preferred the type of people who just say ‘I’m sorry for your loss’ and left it at that. One lady even started asking me questions, like ‘what did he die of?’ I kept answers brief to discourage her from too many questions.

Thankfully it worked.

I re-live what happened enough on my own, thank you…I surely don’t want to give in depth details to total strangers.

And although I was always the parent who handled registration for the kids, it made me think of how hard the first days of school will be this year. John didn’t always make it out to the first day itself bc of work, but if he didn’t he made sure to go to the meet the teacher/open house events in the days following. Now I’ll be handling all that myself. My mom probably will come to help but it isn’t the same. It’s not John, and its not us with our kids.

It sucks.  That is an understatement.

Lots of things are like that now…events, parties, things for family/the kids, holidays. They all serve as additional reminders as to what I’ve lost and who isn’t here.

It would be nice to celebrate something or have some event or activity pass without it ALSO being some painful reminder as to what happened.

Maybe one day it won’t always be like that.

Heading into the half way point...

So this week (on Thursday), we will see the 24th week since John has passed away.  On July 31st, it will be the official "6 month" anniversary date since John passed.

On one hand its hard to believe its come so quickly, but at other times, the 6 months has felt like 6 years.

“Experience is a brutal teacher, but you learn. My God, do you learn.”

C.S. Lewis

The reality is that you will grieve forever...

"The reality is that you will grieve forever.  You will not "get over" the loss of a loved one; you will learn to live with it.  You will heal and you will rebuild yourself around the loss you have suffered.  You will be whole again but you will never be the same.  Nor should you be the same, nor would you want to."

All the time

Love has gone and left me

Love has gone and left me and the days are all alike;
      Eat I must, and sleep I will, — and would that night were here!
But ah! — to lie awake and hear the slow hours strike!
      Would that it were day again! — with twilight near!

Love has gone and left me and I don’t know what to do;
      This or that or what you will is all the same to me;
But all the things that I begin I leave before I’m through, —
      There’s little use in anything as far as I can see.

Love has gone and left me, — and the neighbors knock and borrow,
      And life goes on forever like the gnawing of a mouse, —
And to-morrow and to-morrow and to-morrow and to-morrow
      There’s this little street and this little house.

like an earthquake to the heart...

I talk a lot about my own grief and how much I miss John. At the same time, I never forget how much my kids are hurting too (in fact their pain contributes greatly to my own, because as a mother you want to fix things for your kids, and this is one thing I cannot fix- no matter what)- so when I see things like this from them, it really crushes my heart.

 

My youngest wrote this during his therapy session on Saturday.

His voice & the forgotten video

I came across a video from my phone of the day John came home with hospice (in December, just days before Christmas) when the kids came home from school and realized he was home and got to see him AT home for the first time in nearly 2 months. They had seen him in the hospital a handful of times once he was transferred back to our city but he hadn't been home since the diagnosis.  It had been some 50-odd days or so since he had returned to our home.

Odd, consuming feelings

Sometimes I find myself feeling "What's real and what's not...and who even knows anymore??

Memories that leave you feeling broken

I was driving to work this morning, and my mind wandered to the place it usually does- thinking about John in some capacity.  Sometimes I think about things he did or said, or our life together, or how much I miss him, or I think about when he was sick....just kind of wherever my mind wanders.

Today I was thinking about how its been over a year since he first started complaining about his arm hurting and went to see the neurologist.  The whole year or so played out in my head, all the way to the point at which he died.  And while I know all of this is VERY real, a small voice in my head said in disbelief "There's no way that actually happened."  It all still feels like some very weird dream.  But nearly immediately after that passed through my mind, a bigger voice in my head immediately reminded me that OH YES, it had indeed happened and yes, my husband suffered for so long with a misdiagnosis and yes, once he was diagnosed it was too late (although we didn't know that at first...) and he did die and he isn't ever coming back.  Cue the waterworks and the feeling of my heart sinking in my chest.

I remember almost everything all too well...

And just like that...

      
Its been 15 weeks.


I want this back.  I WANT MY LIFE BACK.  I know I cant have it…but I’d give just about anything to have it back.

We used to feel like a family. We WERE a family.  Now we just feel like a fractured, empty shell of one.  It always- ALWAYS- feels like someone is missing.  But that’s because someone is.  Every “family” thing we do, every “family” picture we take…it feels like someone is screaming a reminder at me that something is wrong, someone is missing. But that’s because someone is.


At least if he was alive, I could see his face or hear his voice.  I think anything would be better than this.

Stuck

A favorite picture

This is probably one of my favorite pictures from the time during John's illness.  Its also one of the pictures that make me cry the most.

John frequently had to remove his wedding ring during his illness- even from that night I brought him to the ER.  Between the 4 surgeries in 6 weeks, the frequent MRI's or other scans, treatments, therapies, or even his 3 radio surgeries (radiation) he often had to remove his ring and give it to me to hold for safe keeping.  John's hands and fingers were much larger than mine and his ring was huge, even on my thumb.  I took to wearing it on a chain around my neck so that I wouldnt lose it.  I frequently would have the ring for days at a time, especially when he would have surgery and be in ICU and couldn't wear it. 

But he would always ask for it back when he was able to wear it again.  I always loved putting it back on his finger, just like the day we got married.

One day after I put it back on him, I snapped this picture. 

8 years and counting, I thought. 

I had hoped we would make it maybe to 9, or maybe even 10. We still believed he could receive some treatment @ MD Anderson at that point that would prolong his life somewhat.  Any amount of additional time wouldve been precious.

I wish we had been right.

These days, his ring is on that same chain I wore, hanging from his urn.  My engagement ring sits in a jewelry box, waiting to be given to my daughter one day as a memento. I've moved my wedding band to my right ring finger.

It never stops looking so out of place on the wrong hand.

The only one (for the most part, anyway...)

Something I've discovered in these 3 months as a widow is that it really is SO easy to take for granted having a partner in your life who helps out with things. They always were there and you probably never thought twice about how much easier life used to be in that aspect.

When your partner passes away, it turns out that there are many, many situation in which you end up being "the only one" able to shoulder the burden because you are the only one LEFT.

Side note: have I ever mentioned I hate the word "widow"?  I do. I loathe it.  I know its what I "technically" am, but I just hate the word. Or maybe I don't hate the word so much as I hate that the word applies to ME.  How can I be a widow?? I'm only 31. But damn it if that isn't the cards I was handed and the life I am living...life is full of surprises and they aren't always good ones.  Sometimes those surprises are the stuff nightmares are made of.

Moving on...

If there is no struggle, there is no progress

Last week at work, we had a client come into our office.

The last time I had seen him was during the time John was still in the hospital and we had spoken briefly about John's illness and he was very nice and said he had been thinking of us.  I was in @ work so little while John was sick that I had not seen him since.

So when he came in, naturally he asked me "How is your husband doing?"

Unnecessary

Dear medical & billing coding persons and/or the insurance industry,

Maybe one day...

"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do."

Eleanor Roosevelt

Things a 6 year old boy should not have to ask.

Jack came to sit with me & then asked me when John's birthday is. I replied to him, telling him the date (its a few months away).

Then he asks 'Can we celebrate daddy's birthday, even though he died? That's ok right?'

The empty space you should be filling

Just another poem that seems so appropriate to my situation.  I miss you so much, John.

I have not felt you
for so many days,
so many nights.
I have sat next to a stranger,
I have held the hand of ghost.
I have kissed the lips of a phantom
And I have put my arm around
The empty space
you should be filling.

- Tyler Knott Gregson

There's someone missing...

I took a picture with the kids yesterday for Easter.  It hurts my heart to take "family" pictures without John.  Its like there is always someone missing from the picture.  I can pretty much just see him right in there, where he should be- next to me.  But there is no John there.  There will never be John there again.  I hate that, its not right.  But I dont want to not have group pictures for occasions, so we took one anyway. 

Laughing and crying

A friend of mine made a post to me today about a memory she had earlier today involving John.  I actually like when people do this- a lot of times they are stories I had completely forgotten about. 

She mentioned that as she heard a particular song on the radio today & it reminded her of a trip we all (John & I, her and her husband) took one night to a casino.  We had a blast, and by the time we left the guys were quite intoxicated.  John kept putting on a bunch of songs and she and I had to listen to those two "serenade" us the whole way home.  The drive was easily an hour and their singing was hilarious- basically like really bad karaoke inside a car.

She mentioned in her comment how this memory made her both laugh and cry, and how people in traffic probably thought she was crazy.

I told her not to worry about it- if she looks crazy, I must look downright insane most of the time, because I do that quite often.

"How are you?" or "How are you doing?"

I get this question a lot.  Its always THE question people first ask me.  I get why, and I understand the question is generic and well meaning...it also happens to be my LEAST favorite question.

You think you know, but you have no idea...

“Mostly it is loss which teaches us about the worth of things.” - Arthur Schopenhauer

A friend shared this quote with me semi recently.

And isn't it so true?  Maybe you read it and think "Yeah, I know that feeling." And maybe you do, but I am betting a lot of people who think that- unless they have suffered some of the "earth shattering" forms of loss that would really give you perspective on what that quote really MEANS.  (And if you do know that kind of loss...I am so so sorry for you.)

Maybe you are luckily blissfully unaware of how true this statement can be in a person's life, maybe you've never experienced that kind of loss- that isn't really the point here.

Reminder

John listened to this CD a lot when he was sick, and would cry over it sometimes. He asked me not to listen to it until he was gone. I've finally ventured into listening to it and I see why it made him so sad now. He probably knew I would be a blubbering mess along side him if I had listened to the CD while he was alive.

This song in particular is very hard to listen to, but is also very touching.

The last video I have of John

This is the last video clip I have with John in it.  The kids got an air hockey table at Christmas and John hadnt gotten to play it with them.  One day a couple of weeks after Christmas while in his wheelchair we were able to position him in a way to play a few rounds with our youngest son.  As you can tell, our youngest was very proud to score a point on his dad ;) 

You can see John's arms/hands were beginning to give him trouble (as in he was losing control of them- we knew that would happen from the tumor, per the Dr's, but that did not make it any easier when we began to see it happening).  That really was the turning point for him- his arms began to go out, then within a rapid period of time basically did not work at all.  Within a couple of weeks of the onset of this he had passed.

Even with difficulty controlling his arms/hands and barely able to hold the air hockey mallet, he still played a couple of rounds of air hockey with our boy. I will always cherish these little videos I have of him, especially this one while he was sick and could barely control his arms/hands, but still did what our kid wanted him to do- spend time playing with him.  That's just part of why he was such a great dad- he'd do nearly anything for the kids, even if it was something that he had to struggle to do.  It broke his heart when he lost the use of his arms completely for lots of reasons, but mainly bc it left him much less able to interact with the kids or play with them.  It broke my heart for the same reason, and also because it left him so defeated.  We also knew that the loss of his arms meant that he would likely go downhill somewhat quickly...I didnt think it would be as quick as it was, and I'll never know if the infection caused him to pass, or if it was in fact the tumor, but either way, it was WAY too fast- much less time than we had hoped for when we began this nightmare, but also way less time than we expected once we were told there was nothing anyone could do for him.

A couple of the last pictures I have of John

I actually have a few newer than this but he is sick (in the hospital during the 4 days before his passing) in them, so I felt like posting the last GOOD ones we had here for the good memories.

This one is from 9 days before he passed, on our son's birthday.  We have a family party @ the house for the kids on their birthday and bigger party later.  J was feeling well enough to get up into his wheelchair to help us celebrate that day.  He was a great dad- even if he hadnt felt well enough he probably still wouldve gotten into that wheelchair because of our son's birthday.

Then this picture was from the 26th- 5 days before he passed and a day before he went into the hospital with the infection.  He spent 4 days in the hospital and came home on the 30th, then passed on the 31st.

This is also a couple of the last pictures of us together.  The first is when I had crawled into his hospital bed (in our room- he was home with hospitce) to cuddle with him for one of the last times and we had both fallen asleep.  Being able to sleep in the same bed was something that was few and far between once he was diagnosed.  Hospital beds arent exactly built for two, plus when J was hurting or needed to be rolled a certain way or had all of his equipment in bed it was impossible to get in there.  I loved the few times I was able to do it. 

The second is one of us being goofy one night in our bedroom.  We moved all the furniture around in our room to make sure his hospice bed could be close to me and in our bedroom so I could take care of him at any time he needed. We spent time at night watching movies and just enjoying each other, or sometimes grieving and crying and comforting each other.  The happier times were always better, it was hard to see him upset and John hated seeing me upset.

Both of these were from a couple of weeks (maybe 2-3 weeks) before his passing.

 

Its been 4 weeks

I love the work of Tyler Knott.  He posts a lot of things that are so relevant to how I am feeling right now.  Even more so was he placed this over a picture of the ocean.  John and I loved the beach.  So I saw this one and had to put it here. It describes how I feel so aptly.

Its been 4 weeks today since John passed.  I hate Thursdays now, because he passed on a Thursday. Each Thursday is just a reminder of what I lost that day.  I actually used to like Thursdays. Now I dread them, or at best just wish I could skip over every Thursday.

(from tylerknott.com)

A journey of a thousand miles begins with a single step

Today my single step is that I managed to go to work, every day, for a full week. 

Three week widow

Today marks the 3rd week since John passed.  3 weeks. 21 days. 504 hours.

And so it ends...

I have to share the awful news...

When nothing feels "right" anymore...

I hate how nothing ever feels right anymore. Literally, everything feels wrong. I spend so much time wondering how long I will feel like this- if I always will feel like this.

A Christmas Picture

Even though I think we're trying to look happy, you can pretty much see it plastered on our faces. Christmas was hard. Very hard.

Christmas

While Christmas was great for the kids- their dad got to come home, they received all they wanted & more (people were VERY generous to us with Christmas because of John's illness. I had to buy and wrap almost nothing. I am immensely grateful for that.) and had good times with family- it was literally the LAST thing I wanted to do.

All this time, all this effort...wasted

I've had it cross my mind a million times to come back here to writing but it was always too hard. The last time I wrote was for our anniversary- now its after the New Year. Its always too hard to write but then I tell myself I *SHOULD* do it, I'll want to read back on this one day. I dont know when, but I'm sure I will. Or maybe my kids will want to when they are old enough one day. I had written last time that 8 years with my husband is not enough. Now I know that 8 years with him is almost certainly all I will get.