Tag: glioblastoma

Vampires

Posted on by mfregien6c146e4539

I sat down to write tonight and started listening to music instead. I came across this song…”If We Were Vampires”…by an artist I had never heard of before…Jason Isbell. It is a poetically beautiful song and very fitting because it is about ideas that have been going through my head a lot lately.

After Jason was diagnosed, I honestly would have done ANYTHING to trade places with him. Seeing the person I love most in this world in pain and losing parts of himself bit by bit…slowly. Confused…unsure of himself…unable to make the simplest of decisions. He did not deserve any of that and it was excruciating to not be able to do anything to make it better.

And now I think he’s the lucky one, because this pain…this being the one left behind…being alone…looking into a future without him in it…sucks.

"Maybe time running out is a gift
I'll work hard 'til the end of my shift
And give you every second I can find
And hope it isn't me who's left behind

It's knowing that this can't go on forever
Likely one of us will have to spend some days alone
Maybe we'll get forty years together
But one day I'll be gone
Or one day you'll be gone"
--Jason Isbell

I wish we would’ve had 40 years…

Sunday Tired Day

Posted on by mfregien6c146e4539

I’m just feeling fully exhausted today…and not the type that can be solved with a nap. It was great having Anna home this weekend and having more time with our kids…but also tiring not having much down time and trying to keep my mood up for them. I’m continually working on getting accounts and whatnot switched over to my name…lots of frustrations and roadblocks with that. Work has been frustrating and stressful…thank God for awesome coworkers at least. Health issues in my extended family are causing me worry and stress and flashbacks to taking care of Jason. All of that combined with deeply missing Jason…and then the holiday season…I just want to get in bed…pull Jason’s quilt up over me…and stay there all day.

I have read a fair amount of articles about getting through the holidays without your loved one. The common thread through all of them has been “don’t do what you don’t feel like doing”. Honestly, none of the authors of those articles must have had kids, because that is complete bullshit. I don’t feel like doing any of the normal holiday things…but when I ask our kids what they want to do, they want to do all of our usual traditional things…so that’s what we’ll do…and I’m already exhausted just thinking about it. I know that they desperately just want things to feel “normal”.

One of the things that I always enjoyed so much about the holidays was just the extra time together. I loved the long Thanksgiving weekend…start it out with family…but then spend the rest quiet at home…just enjoying each other. And then at Christmas-time Jason would always have off work the whole week between Christmas and New Years…and that was my absolute FAVORITE. I loved having him home. We just loved spending time together.

Fondue! Christmas 2019

Thanksgiving Recap

Posted on by mfregien6c146e4539

The kids and I had a good Thanksgiving yesterday at Jason’s sister Jennifer’s house. I love being around them because I feel and see Jason in so many of the things that his family does…and I feel like he is extra smiling down on us and happy when we are together. This makes things extra emotional for me sometimes, but I think that’s okay.

The green bean casserole would have been his favorite…and his sister made it just the way he likes it. I had a hard time swallowing it past the lump in my throat. While everyone else ate their pie room temperature, his brother said “wait…I want mine heated in the microwave first”. Jason would have done the same thing with his apple pie. No way he would have eaten it without heating it up first.

After dinner his sister got out Uno and our kids played with their cousins and aunt and uncle. I was immediately transported back to all the Uno games we played after I first met Jason and Jeremy back in 1996. This was back in the first few months of school when I was still with my ex and Jason had a girlfriend back home in Red Wing. Jason, Jeremy, me, my boyfriend, and my boyfriend’s friend would sit around a table in the basement of Murray Hall and play Uno. It was the first time I was introduced to the “Fregien way” of playing Uno…which of course is the way they played yesterday. Jason would have been right there playing with them yesterday and letting me relax…just like he did at so many other family gatherings.

We were all tired when we got home and spent the rest of the day curled up in Jason’s quilt and watching movies.

Thank you to everyone who thought about us and prayed for us yesterday. I appreciated all the texts, emails, and other messages I received. We are blessed.

Thanksgiving

Posted on by mfregien6c146e4539

Grief and Gratitude. I feel both so overwhelmingly today.

Thanksgiving

Dear God

Sometimes gratitude is difficult
When my heart is broke in two.
I don’t understand Your plan.
I’m confused and angry too.

But today as I sit at this table
Surrounded by those I love
I want to take this time to remember 
Your blessings from above.

You gave us three beautiful children.
They fill me with joy and pride.
I do my best to be their Mom
Without Jason by my side.

You gave me a wonderful family-
Both mine and Jason’s too.
We all grieve together
While he is there with You.

I have a wonderful group of friends.
When I need them they are there-
To cry to laugh to drink some wine
Or walk the dogs in the chilly air.

If this heartache has taught me anything
It’s that these are the most important things
The love of family and friends
Because you never know what the future brings.
Thanksgiving 2020

Happy Mama

Posted on by mfregien6c146e4539

Anna is home for the weekend! We had some Mom/Anna time while the boys had tennis. Then we all watched a movie. It was a really good evening.

Last year when Anna was at school and Jason was sick he would always get really excited about her coming home….but he could never remember exactly when that was going to happen. He probably would have been asking me nonstop for the past two weeks “When’s Anna coming home again??”

Right now I’m just going to try to relish every second of having all my “chicks in my nest”.

Feeling Low

Posted on by mfregien6c146e4539

Not in a great headspace today. Anna is coming home tomorrow so I’m trying to focus on that…but just feeling really down. Writing…listening to music…drinking wine…cuddling dogs.

Surviving

I miss living.
Feeling alive and whole
Knowing happiness and contentment
And the best love…always…and always.

Now I try
I try so hard
But I’m just surviving.
Spinning my wheels…round…and round.

Everything is fake
This can’t be real
Wake me from this nightmare
Groundhogs Day…again…and again.

I’m on edge all the time
My jaw clenched tight
There’s a chasm inside
A scream fighting to take over…and over…and over.

If I shatter into pieces
No one can put me back together
So I wake up in this fake life again
And keep on going…and going…and going.

Tree is Up

Posted on by mfregien6c146e4539

I feel like I spent a lot of time this weekend “chasing peace”…trying to figure out the right combination of “alone time” and “people time”…and how to make sure “alone time” doesn’t just feel like “lonely time”.

Saturday morning the boys and I had our usual breakfast together. I had a really good talk with them about how I am feeling lonely and really need them to spend a little time with me in the evenings…more than the 10 minutes it takes to gulp down dinner. I think they took my words to heart because they worked together yesterday morning to install a doorbell for me. Then Levi had tennis and Seth went to work, but Levi installed a thermostat in the afternoon for me as well.

This morning I had breakfast with my friend Vicki…always a great way to start out Sunday. Then Levi helped me “Christmas” our house a little bit while Seth was at work. While Levi had his tennis lesson this afternoon I met a friend for coffee…which was great…friends and coffee are always a good idea 🙂 Seth hung out with me while I made dinner…yes, I set off the smoke alarm…it just isn’t a homemade meal without it I guess. Then another friend came over for a few drinks this evening.

It’s really hard to balance because being alone quickly becomes lonely…but being too busy gives me anxiety. I do know that I do better when I am able to connect with people in “my tribe” in some way…drinks, coffee, breakfast, etc. As much as I want to just stay in bed and pull the covers over my head I am realizing that I need to be connecting with people to keep my mental and emotional health in a good-ish place.

The Holidays are throwing a whole new element into the mix. Christmas is usually my favorite time of year and I am just dreading it this year. I tried to go out Christmas shopping yesterday…got teary…and just came home. Usually Jason would be all about helping me come up with ideas for the kids and shopping with me. I just don’t want to do it. I bought a fake tree from Target today because I don’t feel like doing a real one. Jason was the one that always made sure the tree was watered and I’m sure that without him it would just lose all it’s needles before Christmas even comes. Levi put up the tree and helped me put out my gnomes…they always make me smile. The tree might not get decorated, but it’s up. I’m trying to make an effort for the kids and kind of take my cues from them…what they want to do…what they don’t really care about…but we’re all struggling.

Escape Into a Book

Posted on by mfregien6c146e4539

Having a really shitty evening. Just feel lonely, cranky, and sad…and I have a headache. I had a long week. Wrapped it up with a meeting with Jae my Insurance/Finance Guy tonight. It was a good meeting. He’s taking a lot of time with me and making sure I understand and am comfortable with stuff…but I just left feeling depressed…I just want Jason back. Going to try to escape into Cormoran Strike’s world tonight…

The Quilt

Posted on by mfregien6c146e4539

A very, very talented friend of mine made a quilt for me out of Jason’s shirts. All I can do is say “thank you” and let the tears run down my face.

The Quilt

Your shirts hold the memories
Of the life that you led.
Your passions represented
With some cloth and some thread.

Your love for your wife-
Adventures together.
We traveled to Belize-
Quality time and sunny weather.

Our kids are there too
You gave them your all-
Whether it was marching band
Or coaching tennis or baseball.

When I look at this quilt
There is tennis galore-
The sport you adored
And took us on trips from shore to shore.

I also remember the friends
That we made-
Lots of USTA matches and
Tournaments like Watercade.

So many other memories
All stitched together with care.
This quilt that I love
I will take everywhere.

And I hope that someday
When I die.
My loved ones will wrap me in it
When they say goodbye.

And then you will find me-
This sadness will end.
Because I know in my heart
We’ll be together again.

Getting Weird

Posted on by mfregien6c146e4539

I’m feeling a little bit better today than I was yesterday. I met one of my widow friends after work today for drinks. Talked it out a little bit with her. I feel like the combination of dark, cold, and not having Jason beside me ever again has just hit me square in the gut. As if I needed some sort of reality check. I hate this roller coaster where I feel a little more steady for a few days and then for no apparent reason I just wake up the next day and everything is fresh again…my heart a gaping wound…life feeling like a complete drudgery.

I find myself getting weird about some things. For example, I get anxiety at the thought of people coming to my house. I was looking at front door welcome wreaths at the craft fair with my sister-in-law last Friday and it suddenly just hit me that I don’t want a wreath that welcomes people. I’m not wanting people to come over. I joked with her and said I need one that says “Welcome-ish”.

I also get anxiety over the possibility of seeing someone I know when I’m not expecting to see them. Whenever I’m out and about I just keep my head down and don’t make eye contact. Just depending on who the person is and what they may/or may not know about Jason there’s the danger of being put on the spot and getting hit with feelings that I don’t want to deal with at the moment. I’ve only run into people a couple of times…and it’s been just fine…but still the possibility causes stress.

I have a hard time concentrating on conversation when I’m out having dinner with friends or family. My mind totally wanders to all the other people I can see in the restaurant. I can tell you exactly where the couples are and the stories I have made up about them in my head. At which point I usually just want to go home honestly. High-back booths are the biggest blessing.

So that’s where I’m at…feeling sad and lonely…and getting kinda weird. It’s a poetry night…

Peace in a Wine Glass

Some nights the wine
Goes down
Easy.

But the bottom of the glass
Holds no
Peace.

I get lost in the memories
Of you and
Me.

My insides feel too tight
And ready to
Snap.

The lump in my throat
Restricts every
Breath.

Inside of my mind
The panic is
Rising.

My grief is so strong-
My anxiety
Paralyzing.

I’m trying to find myself-
Find some happy
Some joy.

I see glimpses of a future-
Feel moments of
Okay.

And then a fresh wave
Of debilitating sadness
Hits.

I struggle to breathe
And stand upright
Again.