Category Archives: Friends and Family

Surviving Tornadoes


Just finished assessing my trees after the tornadoes in the Austin, TX area last night. The supercenter all over the news is the one near our house. We were at that Home Depot just a couple hours before the tornadoes came. My daughter needed paint sealant and I needed to mail a package.

My trees are old-growth, 2-3+ stories tall. One of the live oak clusters is suspected to be 2-300 years old, and our house was designed around it. There are 20+ trees on our city lot. One of the features that drew John and me to this place. This neighborhood was built around the trees in the 70s–they didn’t clear-cut them.

One of my cedar elms near the street has had a broken branch caught in its top since the polar vortex storms last year. I haven’t tried to get it down yet. Well, it’s gone now. And the top was snapped off another tree.

In the meantime, absolutely NO debris on our streets within a couple of blocks of our house. No twigs, no gravel–nothing. The roads look vacuumed and washed.

I saw the wind change in the rain yesterday–when it took on a pulse in its blustering. The rain and wind were so hard that they created a sheet that looked like a wall. I’m used to that. Spring storms here are like that. And when the wind is really blowing, the rain turns sideways. We see that sort of thing when the hurricanes come inland through our area–sideways rain. Not really a surprising thing.

But then it turned different. The rain started pulsing as it rained sideways. It looked like morse code pulsing in the sideways blowing rain. Like smoke signals in a drumbeat that you could see in the sideways rain–as if you could see the sound.

But it stopped about as quickly as it started.

I also found bits of insulation in the backyard. I thought it was feathers floating out of the trees, but it wasn’t. Looking up into my trees, there may be some debris caught in them.

After my experiences surviving tornadoes in OK and TX, I have sober respect for them. I’m also familiar with many other stories through the Red Cross, back when mom provided disaster relief training in OK and as her classroom assistant, I’d watched every training film available.

Our house was damaged but passed over by a tornado when I was 7 years old. An event called “Terrible Tuesday.” Our house stood while our neighbors’ on every side weren’t as lucky.

I’ve never forgotten what that was like, the damage, or how long it took our family to recover.

I think a tornado passed over our house yesterday. And I’m so grateful.

Storm
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Filed under Austin, Community, Friends and Family, It's An Aberrant Life, Random Thoughts

Poppies – Pins for a Cause…


My daughter’s new enamel pins–just finished for her Etsy store (SquashRabbit) to support another worthy cause.
This time the flowers are poppies!
These are completely her design, inspired by remembrance traditions from around the world.
Including the shiny metallic black back cards. She wanted the cards to be as elegant as the pins.
Aren’t they beautiful? #ProudMama
She’s decided to benefit veterans and their children in crisis after a loss.
If you don’t mind sharing, I know she’ll be grateful for your support. ❤
#pinsforacause
Poppy Pins for a Cause

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Filed under 'Tis the Season, Artist Information & Notes, Friends and Family, Jack Designs

The Room…


The room is full, a straggling chair or two in the corner.
Men vs. women, about 50/50.

There are no more blocked-out spaces, but every face is masked nonetheless.

“Have you traveled anywhere outside of the country in the last 4 months?”
“I’m a teacher. I can’t afford to go anywhere.”
There’s a hesitant chuckle. “Hopefully that… will improve, ma’am.”
“Even if things improve, I’ll still be a teacher.”

The room’s chatter is low, respectful.
Broken only by an occasional voice from the front.

The voice calls out, “I have three more names on the booaaard….”

The room pauses as everyone turns to look.
Three people stand up. The low murmur returns.

A farmer from Tennessee meets a farmer from Corpus Christi.
They may not shake hands, but their friendly voices do.
A third aged voice chimes in, “My late husband used to farm in East Texas.”

Mixed southern accents discuss the impact of hurricanes in the east on the crops.

“How’s your cotton doing?”
“It’s alright. We’ll go to harvest in September.”
“We’re a little earlier than that. How’s your corn though?”
“We didn’t get enough rain in spite of that hurricane.”
“Your fields on irrigation?”

Everyone listens, quietly appreciative of the social ease found in this place.

A woman gets up to go check on something,
phone in hand, leaving her purse on the floor, open.
There’s a solidarity in the room. Not only will no one
bother her purse, no one would dare to.

It’s a fraternity that no one chooses to join–but it is one nonetheless.

The woman returns to her open bag. A man wearing a backpack,
a leg brace, and carrying a telescoping cane limps by her side.
A glance at their wrists tells you–she’s the patient, not him.

The room is a sea of silver hair, spotted with dye jobs. In 45 minutes
of polite waiting, only 3 patients appear to be under the age of 60.
Two are quiet, unabashedly former or current military. Only one,
quiet, lanky 20-something in the room. He is my son.

I see the faces look toward my son. Their eyes soften as they
see him next to me. I’m used to it. My son stares at his phone.

A look around the room tells you, most of these people came here
alone. A few with spouses. What a good son they know mine must be.

“I wish my son were here.” The barely audible whisper echoes
across hidden faces and watery eyes. What a good son.
He is, but they don’t know why.

The board on the wall changes. “I have new names on the booaaard…”

And there he is.

My son stands up, in his tank top and camping shorts. He
ambles to the front of the cancer lab. Startled looks spread
across the space, a wave bouncing from one wall to the next.

“Hi, Mr. Chambers. Have you had a fever this week?
Let’s get your bracelet printed.”
—-

July 12, 2021
1:11pm

Copyright © 2021, Julia Meek Chambers, all rights reserved. No part of my post, writing, or words may be copied and shared without my express written permission and attribution.

If you found this page because your family is fighting glioblastoma and you need support, please visit https://frellcancer.wordpress.com for some helpful resources.

Place used pens here.

PS I am still looking for full-time work to cover cancer care at MDA. If you know anyone who needs a writer, I would be grateful for an introduction.

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Filed under Conversations From the Passenger Seat, Friends and Family, It's An Aberrant Life, Kidney Cancer

Remember When…


I have a love-hate relationship with each digital app that shows me memories.

I mean, it’s not bad. It really isn’t.

In some ways, it helps me to reconnect pieces of my life, so there’s more in my line of sight than just this crisis or that.

But there’s no denying that being faced with a sudden memory can have an emotional impact at an inconvenient time.

John’s smiling face in a hospital room.

My kids when they were little.

Conversations with friends who have passed away.

Memories from a time that was less “responsible.”

Memories around old goals. Dreams unspoken.

Memories from before deployments.

From before Cancer.

From before Death.

From before.

Before…

These inconvenient memories pop up while I must be serious
and keep my game face on.

Making up for my shitty memory.

Oh yeah. That’s right. I was going to…

Waves crashing…

Is that even bad?

Probably not.

We’ve tried to create a world where public perception and professionalism always mean never showing what’s really happening under the surface.

Never let them see the mud–unless artfully displayed.

Always have a show closet near the door.

A YouTube corner.

Selective reality.

But is that healthy?

Is it natural?

Is it destructive denial in the long term?

Life is full of challenges, some bigger than others.

And that’s how we grow as humans.

Life has always been in the overcoming.

In the transmutation.

It has always been about becoming bigger than our initial perspectives.

Digging through challenges and beliefs–layered deeper than we thought possible.

Reframing our viewpoints.

Dawning new understanding.

Digging into why we’re really here.

What meaningful thing can I learn in this experience that can serve others?

Surviving is surviving.

But to THRIVE, we must grow.

We must transmute.

But that requires acknowledging reality as it is.

In order to transmute it into something better.

Anyway…

Facebook showed me memories today, including a memory of profound words spoken by my son a year ago.

Somehow I needed to hear them again today.

And while I’m inconveniently emotional, I think I’m also grateful…


April 8, 2021
9:22pm

Copyright © 2021, Julia Meek Chambers, all rights reserved. No part of my post, writing, or words may be copied and shared without my express written permission and attribution.

Memories

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Filed under Friends and Family, It's An Aberrant Life, Random Thoughts, Writing

What Hope…?


A couple of days ago, a brain cancer charity let me know that I am one of the top 10 influencers on Twitter for brain cancer. The data measurement is done through a service that serves the healthcare industry only.

I haven’t known how to feel about it. I mainly share studies and medical articles aimed at treatment for Glioblastoma. As is logical.

I used to be one of the top 20 influencers in crochet, but… that’s another story.

As I read the note, I was teary-eyed. My son was in the room when I read the note, and he queried the look on my face.

I don’t know how to feel, and I’m kinda sad, I said. I can barely do what I do. I don’t have any resources, and I can’t create a charity or foundation yet. Brain cancer patients suffer so much for lack of research funding.

And here, I make the rank of top influencer on Twitter.

What hope is there for a cure if *I* make the top 10? Because I have not yet been able to do much. I don’t have time to network or chat. I cannot unleash my full dedication to move mountains, create a foundation and find a way to help. All I can do is share links to studies. I don’t even have the bandwidth to write much about it.

And my son said, “Excuse me? What do you mean, what hope? With everything you’ve been through, even while working as hard as you do, you still manage to help. Something good is born. The willpower to make a difference with literally nothing but your determination to do so. You demonstrate the difference that a single person can make, even with nothing. To be an influence for good in the world. And if that isn’t hope, I don’t know what is.”

A second revelation dawned as I felt the truth in his words.

Even one imperfect voice can matter.

I love that kid of mine. And sometimes, he has me in awe.


April 8, 2020
7:10am

Copyright © 2020, Julia Meek Chambers, all rights reserved. No part of my post, writing, or words may be copied and shared without my express written permission and attribution.

Hope

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Filed under Community, Friends and Family, Glioblastoma, Grief, Random Thoughts, Writing

Voice Of Hope…


It was 20 years ago that I nearly lost my unborn son.

It was in the middle of the night.  Four and a half months into my second pregnancy, I woke up in a pool of blood.  And it became quickly obvious that I was miscarrying.  A call to my doctor confirmed my fears.  It was about 3am, so I was told I might as well rest a couple hours before coming in, and that I had a long day ahead of me.

Amidst the various bits of information over the phone, my husband and I were made aware that at this stage of pregnancy, there’s not much that can be done to save an unborn child.  That the main concern at this point was my own life and the rate of my bleeding.  I was told that I needed to go to the emergency room if my bleeding increased to filling a menstrual pad every two hours.  There was blood all over my bed, and I had no idea exactly how much I’d lost.  But an hour and a half later, my fresh pad was full.  I had no fear for my own life.  I didn’t feel weakened by the blood loss yet, but I knew I was going to lose my baby.  That I would experience what my own mother and grandmother had gone through before me.

I’m no stranger to trauma, so I did what came naturally to me.  I braced for the blow that I knew would come.  No fear about it really, just systematically getting ready to get through one more traumatic event that would shape my life as I knew it.

There was no doubt what was happening and there was no reason in my mind to see things any differently.  I was going to lose a baby.  Women have born this pain for ages.  I was not unique in this and there was no reason or time to whine.  It was just time to face it and get through.  I could fall apart later.

I had accepted that I was indeed losing a child.  And for many really good reasons.  My mother and grandmother and sister all had before me.  And I was readying myself for it.  But I had much more reason than most to so simply accept this fate.

Once upon a time, I couldn’t have children.  It was absolutely impossible.  I was baren. Until I had a full open surgery for endometriosis.  In fact, it wasn’t until after the surgery that I even found out.  Up until that point, I’d already had to embrace the understanding that women with endometriosis as bad as mine simply have a lot of trouble bringing pregnancies to term.  But I was only 23, with the scar tissue damage of someone more than twice my age.  It had begun to affect my other organs.  I was getting sicker and sicker and something had to be done.  Surgery was part of the answer.

However, it wasn’t until they went in that my surgeon discovered that my tubes were completely closed.  That meant something quite profound: it was impossible at that point for me to ever conceive.

And so he fixed me.

After the surgery, my surgeon told me that without having me open on the table, there was no way with just a scope they could have seen that my tubes were closed.

I would have tried my entire life to have kids, never knowing why I couldn’t.

That said, the surgery wasn’t 100% successful.  I still had problems with endometriosis.  But, I lived a much more normal life than before.

So as you can see, I wasn’t surprised to be losing a child.

And as I felt life flow from me, I lay there in the dark preparing myself for the emotional pain ahead, getting my head and heart ready – knowing that after so much already, I was strong enough to endure even this.

And then one of the most powerful things happened and broke me down. 

It still makes me bawl to remember it to this day.  In fact, my face is a soaking wet mess now as I type.

The experience was that powerful. 

Nothing fancy. It was simply this…
I heard a voice.  Clear as day.
And it said,
“Mommy, don’t give up on me.”

That’s all the voice said.

And it was then that I knew that my son was alive.

I don’t care what you think.  I really don’t.  Whether you believe my story, or think I’m lying or you think my mind created the experience because I couldn’t accept my reality or whatever.

Because I know better.  I know exactly where my head was.  And I didn’t even try to hope.

I spent that first day going through all the things they do in a situation like mine.  Doctors everywhere consoling me about what I was about to go through.

My bleeding slowed and days would pass.  My doctors would continue to check the heartbeat and have me come in to see them every day.  They would send me for ultrasounds to evaluate the new hole in my uterus that caused the whole situation.  Doctors continued to tell me that I needed to face the reality that I would lose my child.  That I was too calm and not processing the situation as I should.  This child was not destined to live. That I needed to get a grip and prepare myself for this impending loss.

But I wasn’t phased.  I knew.

It would be 9 weeks before we knew for certain that our son was going to make it. Nine weeks of doctors telling us that we should not hope too much because the odds were so far against us.  Until finally, they said one day, well… maybe he’ll be OK after all.

I continued to bleed throughout the rest of my pregnancy, though just a trickle.  And a month early gave birth to a healthy baby boy.

So there you are, little one.  Thank you for making mommy believe in you. 

For years it seemed we had an unexplainable connection.  Every time I woke up, he was soon awake.  Not crying, not upset or fussy, just awake and ready to be with mommy.  It was so prevalent that sometimes I’d wake up and lie there quietly and think to him, no-no-no honey please do not wake up.  Stay asleep.  But he usually woke up anyway.  Other times I’d wake up, and sneak a peek at him while he slept, only to find him awake and looking at me.  And I’d think to myself, You little stinker! Are you deliberately waking me up?  Or are you just being there for mommy?  It wasn’t every night, but this unexplainable connection continued well into his school years.

He is 20 now. And 19 months ago we found out he had a very rare form of kidney cancer unheard of in anyone under the age of 20, just 5 months after the death of his father.

I faced the mortality of losing my baby that night, more than 20 years ago. And an unexplainable voice gave me hope. Gave me faith.

I think about that miraculous experience from so long ago and wonder if I might hear it again.

Will a voice in the dark give me hope? Comfort my soul?

And then, my son comes home from his late-night college class.

And while I am working away on yet another project,

he hugs me and whispers,

“I love you, Mom.”


11-5-2019
Copyright © 2019 by Julia Meek Chambers, all rights reserved.

Motherhood

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Filed under Friends and Family, Grief, Inspiration, New Term Tuesday, Writing

Education From “The Funny Papers…”


When I was a kid, my grandfather had an expression he frequently used to refer to people with no sense in their heads. People who “get their education from the funny papers.”

I used to think it was such an odd expression. An odd phrase. I loved reading the “funny papers.” I think it even helped improve my reading skills.

“Blondie” was one of my favorites. Along with “Beetle Bailey” and others. I recently mentioned to my son when he made himself a giant sandwich that he’d created a nice looking Dagwood Sandwich. He froze and stared at me, then asked me what on earth was a Dagwood sandwich. It never occurred to me that he might not know.

I spent the day today working and then attended a local veteran’s festival event that supports vets and their families. Met some good people and organizations, which I’ll share about later.

However, it was emotional for me. I stood there, surrounded by soldiers and vets, in uniform and out. And I burst into tears. Ugh. I tried to keep it together, but really couldn’t quite. Still, it was a good event and I had some pleasant conversation by the time I left and everyone was taking down.

The afternoon of overwhelming emotion left me stripped though. And instead of getting right back to work, which I needed to do, I wanted nothing more than to run away, find a movie theater or binge watch Doctor Who or Good Omens on auto-replay. And I can’t.

So, I did the next best thing. My son and I sat down to eat dinner in front of cartoons tonight. And when my daughter came home from her classes, she joined in with us too.

We started with Phineas and Ferb and ended with Ducktales. Cartoons we used to watch together with John at one time or another.

And it was interesting how helpful it was. I mean, I almost never watch TV on my own. I watched TV with John. And since his death, I don’t watch much of it at all. (In fact, John bought “me” our first TV when we were dating. “Look honey, I have a surprise for you,” as I recall it went.) So it’s been weeks since I sat down to watch anything. And here it was just cartoons that I turned to for relief. Even the ridiculous commercials for kids between cartoon breaks were oddly comforting.

What really struck me though, especially as an entrepreneur, was the Ducktales episode. At the beginning of the episode, Louie approaches Scrooge for money to fund a new hair-brained business venture. And Scrooge tells him that if he wants to be in business, he needs to find a problem that needs solving and then provide a solution. That this was his key to success.

And I was struck by how awesome it was that this cartoon was teaching principles of business to kids. And how Scrooge, who had plenty of money to hand out (and was even at one point willing to give Louie a small loan, but not a huge one), offered advice instead. He encouraged Louie to be enterprising.

It was refreshing, as I try to grow my social media and writing business, now that I’m supporting my family all on my own. Refreshing to hear a solid business principle come out of a cartoon character’s mouth.

Huh, an education from today’s modern “funny papers.”

I wonder how many kids who watched this cartoon when it first aired way back when are now business owners today.

In the next scenes, Louie brainstorms with his siblings to find problems to solve and needs to fill.

He asks them – what does everyone need? And his sister pipes up and says “Crochet hand grenade holders!”

And with that, I just want to make one.

It cinched the deal because I was already thinking earlier this week that I need a Holy Hand Grenade Of Antioch. And that the Maker in me very much wants to make one for prominent display inside my family TARDIS.

And she’s right. I’m going to need a holder for it.

Amazon Affiliate Link - Crochet Holy Hand Grenade Of Antioch

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Filed under crochet, Crochet Ruminations, Friends and Family, NaBloPoMo, Random Thoughts, Writing

‘Tis A Silly Place


TARDIS - Halloween 2019 - Aberrant Crochet setup

“It’s like you’re a Doctor Who evangelist.”

That paused me.

I measured my gaze.

“What do you mean?” I asked, looking over.

“Every group of kids who come to the door! You’re like, ‘Do you like my TARDIS? Do you know what a TARDIS is? It’s from Doctor Who! You should look that up on YouTube.”

My daughter’s wry smirk looks just like her father’s.

I smile.

She’s not wrong.

Halloween is a geek’s and cosplayer’s dream holiday.

Only for me, I haven’t been costuming up that much the last few years.

This year, I grabbed my handknit Doctor Who scarf, a brown “Indiana Jones” hat and one of my wool coats and called it good.

But what I really look forward to each year is dressing up my yard.

Right square in front of our door is a lifesize TARDIS that’s my pride and joy.

You have to walk through the TARDIS to enter my home. Literally.

I bought it in a charity auction 4 years ago, the October before John was diagnosed with brain cancer.

October is our birthday month and I knew this TARDIS was perfectly my birthday gift. I also found a killer deal on a BlendTec the same month, so I was doubly happy.

Little did I know how important that BlendTec would be for John in the coming months.

The TARDIS matched our house under the overhang, beautifully. And the kids and I crafted a garden of hand mines that year to go with it.

It was glorious.

And only the knowing had any idea what they were looking at.

We were only lacking in Weeping Angels at the time. A fact I rectified last year. There are now at least 13 in my yard, hidden everywhere.

I’m sure some delivery people believe we must be very Catholic. Or simply very into angels.

What they don’t know just might steal their future though!

And then there’s our annual spider infestation.

I was so pleased when I first heard that the newly introduced season of the 13th Doctor had an episode with mutant spiders in it. Though in truth, I was disappointed with how they concluded the episode. I’m a fan of spiders and that ending was frankly illogically cruel.

But from a yard decor point of view, my spider invasion combined with the TARDIS and Weeping Angels makes my yard a pretty authentic fan fiction of its own.

Finally, after all these years they wrote an episode just for me.

We’ve lost 3 trees since John died, but we still managed to put up a good infestation of spiders this year. I couldn’t find all my crochet spider webs that I’ve made over the years. Not sure where they got put, but the giant one went up and giant momma spider, the 10-foot spider we have, was hung on the web with care.

And the effect paid off as always, demonstrated by the audible gasps when people rounded our 200-300-year-old live oaks to step onto our front walk.

You have to have big old trees to display a 10-foot spider in the air.

“There are some fun decorations in the neighborhood,” one kid told me. “But nothing compares to this! Your house is the coolest. I was here last year!”

You can believe that boosted my ego.

Though in truth, the TARDIS and angels stay up year-round.

I only take down the spiders outside. And mostly inside.

But the eclectic inside of our family TARDIS is a story for another time.

“This house has chocolate! Omg, we can have more than one piece??? You are the nicest!”

I love the smiles on the kids’ faces. Even the dubiously older ones.

Here, take another KitKat.

John always believed in handing out only the good stuff for Halloween.

None of that generic crap. The kids get plenty of that from everyone else.

Chocolate. Every year we give out chocolate.

I heard of a family that gave out king-size Snickers bars to kids one year.

I think that’s cool, but I’ve never gone that big. I stick with fistfuls of smaller bits.

I used to have a bucket of shiny pennies that every child under the age of 6 could stick their hand in and grab a handful to take home.

I liked the idea of fostering a healthy experience with a money blessing.

To give little kids that magical feeling of receiving generosity, without measure, only that they must reach out, seize it and receive it.

Besides, there’s something so pretty about shiny copper.

I need to get back to doing that again. Giving change to little kids is not very expensive at all. Especially when you consider the cost of candy.

Halloween is an odd holiday for sure.

And while it does occur during The Day Of The Dead celebrations that we have here in Texas (which culminate on November 2nd), I’m not really speaking to that part today. Though there’s certainly an influence and a magic in that part, which I do obviously appreciate.

It’s something else about Halloween. I share my perspective as someone raised without the holiday, who later came into the participation of it, thoughtfully, as a mother.

No one thinks about it being a holiday of generosity.

Its American celebration may have started out with the goal of curtailing mischief, but today, it’s evolved into an opportunity to exercise our imagination, to dress up and play as adults, to face our fears, and to bless strangers.

How interesting is that.

STRANGERS.

Of all things.

Without guilt.

Without shoulds.

Without major expectations.

Without commandment.

I mean it’s simple. It’s candy.

And fun.

And we tell each other how cool our costumes are and find out our favorite superheroes, movies, legends, and puns.

Don’t forget the puns.

No family fights over obligations.

No tantrums for not getting the latest iPhone.

And it’s OK to buy yourself something, just because you thought it would be fun.

Or thought it would make someone laugh.

Not because it was practical or necessary or expected.

It’s an interesting holiday, with something to teach.

If we let it.

Hope yours was great.

Giant spider - Halloween 2019 - Aberrant Crochet

 

 

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Filed under Friends and Family, Halloween, NaBloPoMo, Random Thoughts, Writing

Compliment…


My son asked me to please be there for a friend of his tonight.

Of course, I agreed.

Afterward, I thanked him for asking and trusting me to help his friends.

And he paid me the highest unexpected compliment I could ask for.

“You’re literally the wisest person on the planet I know Mom, how could I not?”

[tears]

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In Our Court…


There is much goodness in the world,
and I’ve been bathed in it this weekend.
Something I’ve needed.

Life may be brutal and cruel sometimes; it can be hard,
but we dictate the lens through which we choose to see.

We decide where we put our energies,
the relationships we build,
the people we elevate,
the problems we choose to solve,
the ears we choose to lend,
the people we choose to bless,
the actions we choose to take,
the thoughts we allow to become things,
the creations we culminate.

We choose to act or to not.
To nurture or to neglect.

Everything is in our court to do something with.

The positive that we seed into the world.
Or the not.

Even the things we cannot control – we have the freedom,
the choice, and the responsibility of how to handle them.

A free and creative life is not an easy one
but never was such promised.

We were given a variety of tools
and ways to create our reality.
And then given the free will
to go forth and create.

I don’t know what I’m doing
any more than the next person,
but I’m still learning and trying.

I have an ideal I hold in my heart,
and a Creator whom I believe teaches
and guides me.

I still believe that Light
overcomes the Darkness
and that There Is Only Love.

And I appreciate everyone around me
who helps reflect these gifts to me
and fills my cup.

Thank you, friends. ❤ ❤


October 5th, 2019
6:43pm

Copyright © 2019, Julia Meek Chambers, all rights reserved. No part of my post, writing, or words may be copied and shared without my express written permission and attribution.

Perspective

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Harbinger…


March is when it all started,
for John and for our son.

Every year for the last 3 years,
March has been a hell harbinger.

As this March’s anniversaries of our life pass,
and our son’s next set of scans approach this week at MD Anderson,
I hope God’s Light will finally show brightly the way through.

Lend us hope, for we are weary.
Lend us love, for we have lost.
Lend me strength, as I cannot falter
and I cannot fail.


March 15, 2019
12:33am

Copyright © 2019, Julia Meek Chambers, all rights reserved. No part of my post, writing, or words may be copied and shared without my express written permission and attribution.

Harbinger

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Filed under Friends and Family, Grief, Kidney Cancer, kids, Random Thoughts, Writing

Bearing Witness…


In the last couple of weeks, two more of John’s and my friends from college have passed away from cancer, both leaving behind orphans and grieving spouses. That’s something like 11 people now that John and I went to college with, who have passed away from cancer in the last 3 years. All in their 40’s. All from a theology college of less than 1200 students. A college that closed its doors 3 years after I left and no longer exists, except in memory.

Our alumni community as a whole is shocked and grieving, as two of our best fought hard and died. And as my worries since John’s death have multiplied and as our wedding anniversary approaches just before Christmas, I would be lying if I said I am not struggling to survive every day. John and I would have celebrated 23 years together on the 23rd before Christmas. We got married on Christmas weekend to make it easier on our friends around the country to be able to attend. I struggle with a lack of luster and motivation now that I never knew possible, even during John’s fight. A lack of motivation that only comes from loss caused by death. I think perhaps my lack is more significant than expected in part because of how long and hard the fight was. If he’d passed away suddenly, there wouldn’t have been time to hope. He wouldn’t have worked his butt off, hoping doctors would learn as much as possible from him, only to feel like it meant nothing. At least during the fight we had hope. But in the end, I could not save John’s life. And either neither could, or would, God. Now, there is no hope in the physical life. There’s only hope in death. When you’ve lived a life of service and it’s all you know, such terrible losses and traumas are extremely hard to justify, or recover from. If what I do here on this plane does not make a difference, then where is the motivation in this life.

Megan Divine is an expert in extreme grief and loss. You can find her website at https://www.refugeingrief.com. She created a helpful video titled, How Do You Help A Grieving Friend?, which I’ve shared below.

In my struggle to find words, I’ve voiced much of what this video points out. It’s all true. Witnessing is the most powerful thing in the enduring and bearing of grief. Opportunity to speak and experiences to be heard are invaluable.

When half of you dies and life speeds on and everyone else goes back to living, we feel trapped in a madness no one else sees. Because it *is* a madness no one else knows without having experienced it. And the only way out is to give it voice with witnesses.

My experience with the trauma of glioblastoma and John’s death has made me think about my philosophies on parenthood even deeper. When my kids fell and got hurt, I didn’t interpret their pain for them (that must really hurt) nor did I deny it’s existence (aw, you’re not hurt) either. I held them as they cried, let them tell me about it while taking care of anything I knew needed attention and then figured out how to guide them in their emotions based on how they were processing them. I realized that there were times that my children felt trapped, waiting for someone to notice that something was wrong. For someone to stop them and give them the chance to speak. Part of my job was being a detective too and not just expecting that my kids knew they could talk to me, but proving it. They needed to process and they needed to feel safe with me to do it in a healthy and useful way. They needed a chance to evolve carefully emotionally. I didn’t need to tell them how they felt, they needed to voice it out and share with me and sort it verbally. I wanted my kids to know their own voice, so they could find it when they need it most. And I wanted them to know I would listen, in everything, little or big. As a result, my relationship with my kids is stronger, when they and I need it most. I listened to everything, so they’d never doubt if I could be trusted when the big things came up.

Grief is much the same way, just a large-scale experiment. It’s a two-way street, but when the grieved feel their hands being truly held, vs. slapped, denied or even a vacuum of no hand to find at all (silence is the worst), it makes a difference. Witnessing helps most of all. Tell me your story, the real one, not the pretend one. Hasn’t genuine friendship always been about that? Don’t real people, good people do that for each other?

Some really traumatic and horrible things happened that no one wants to acknowledge, not even I want it to be real. And yet if they’re never acknowledged, healing will never truly take place. It helps me when my friends will bring up and speak John’s name, when they acknowledge his fight and that it was hard, not easy, when they ask questions and are willing to hear the truth. It helps when friends let me be genuine and don’t expect me to put on a “good face.” It helps when my friends don’t seem to disappear into a black hole too, when they don’t avoid me so as to not experience my agony. It helps to know my friends are not afraid of me.

Thank you to those who will take the opportunity to learn with me and who will bear to witness.

As many of us come together as a community to support a variety of trials and losses and hard experiences, some very recent and painful in the loss of our alumni friends, and all the cancer fights in our circles, this is the introspection I have today.


This video is hosted on YouTube and is copyright Megan Devine and Refuge in Grief. It is shared here with permission. You can learn more about Megan and her work at https://www.refugeingrief.com.

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Early for the Ball…


I dreamed Uber showed up 15 minutes too early
to pick me up for the ball–and I wasn’t dressed yet.

My kids were all yelling at me,
“Mom, Mom, Mommmmm!”

And I’m all grumbly.

“But I have 15 minutes. My hair looks stupid.”

“Mom, hurry! They can’t just wait on you!”

Why not… grumble…. fine. Ugh.

I start pulling my red studded cowboy boots on.

Good thing my kids were there in my dream
to yell at me and wake this Cinderella up.

I accidentally turned my alarm off this morning.

Would have missed my meeting.

red studded cowboy boots - the best anniversary gift Texas

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HBD…


Today is tough.

Today’s my birthday and John’s birthday is in 6 days. The weekend between our birthdays was always our standing annual date weekend. We’ve almost never thrown birthday parties for ourselves. Instead we focused on our own personal celebration. And my motto has always been to set aside October as our birthday month to do something memorable each year. It’s so easy for the monotony of work, duty and stress to just blend all your memories together into one mushy pile. But for our birthday month, I would try to do something memorable – something unique just to feed the soul – and set things apart. A deposit into that bank account of fun, positive experiences in life.

For John and I, regardless of how busy or crazy the year was, we had this standing date with each other that we looked forward to. Our October weekend birthday date. Our fun date. We tried never to break it. Of course we always tried to do something nice for our anniversary on December 23rd, but our birthday date weekend was something fun and a creation all ours I guess.

Our date this year would have fallen tonight. And then this week would have been our special week. We would have tried to at least make dinner creative most nights this week. Both John and I love to cook. Sometimes for our date, he’d make some amazing creative dish. His venison round steak with spicy Magic Bourbon Sauce was out of this world and probably my favorite of his creations. John’s skill with food often left us disappointed if we went out, so eating in was not uncommon.

His absence is punctuated right now. And it really hurts.

So I’m hanging with my two favorite people in the world.

Our kids. And soaking it in.

Love you honey. Wish you were here.

#CureGlioblastoma

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El Dorado…


It’s been a difficult few days.

Actually, a difficult few weeks and months.

Actually… 18 months of crisis fighting tooth and nail to be exact.
Difficult challenges around every corner.

Culminating up to a pinnacle, a colossus.

I suppose befitting the force of nature that I fiercely love. Who showers me and our children with his fierce love in return. Our love that was not simply stumbled upon in luck, but worked, created, earned and crafted between us over 22 years. #SeizeTheRide

John’s chariot came. He was stolen away this weekend, far too soon.

Neither he nor I did anything to deserve the pain and trials received through this journey, but we strove to create something better through them anyway. We chose to transmute and live consciously and as gracefully as possible. And do every damned thing we could to help others, every chance possible.

I’d like to think our lives were richer and more meaningful for it.

The love and support of others helped in every way.

To everyone who has followed and simply made a point of reaching out and holding our hands in this most terrible of storms – our utmost gratitude.

– ♡♡ –

#RaiseAwareness  #Glioblastoma #CureGBM #PrayersContinued

Here’s what I wrote for John’s FB page.  I don’t think I can write it again: https://www.facebook.com/303426583411423/photos/a.303554250065323.1073741831.303426583411423/368767613543986/?type=3&theater

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Strong Together…


I sit here marveling at how John has enriched my life
and helped me to believe in myself.

We love each other so much.
We’ve always been strong together.

John’s inextricably a part of everything
that I’ve ever become, in my adult life,
as I am in his.

My wins are his.
His wins are mine.

And yet–we’re two whole people who just happened
to like each other’s company–a lot.

In our 22 years together, we have deeply loved and
helped each other become more than our parts.

It’s actually difficult to explain,
but I am so much more today than when we met.

Like, I’m a whole multiple-reality universe bigger
and more detailed today than before.
At every possible level of the soul.

Like Shrek’s onion, I keep growing new layers.
Or is it levels of my soul, really.

And John’s love, friendship, and support are
threaded through every one of them.

John doesn’t complete me.
That’s not the right description.

He empowers me.
He takes joy for me.

He tells me that I help him see the strength
that he didn’t realize was there.

That he can do and be so much more because of me.
And that because of me, he wants to even that much more.

I get it.
I feel the same.
It’s an atonement.

Sometimes, even now, it’s a confusing reality
to realize how this really works.

Sometimes now, in the face of this adversity,
it’s also all so much clearer the importance of what we’ve crafted.
And its power.

Love doesn’t work like the fluffy images in the movies.

If we were to try to live love in that way,
it really couldn’t just work.

It’s not found so much as it’s crafted.
Invested.

And it looks a lot like the richest,
most beautifully textured friendship you can imagine.

Without the solidity of our friendship,
this wouldn’t be what it is.

Honestly, if neither of us had the ability to be a quality friend,
I don’t think this could work.
Friendship is the well source of our love.

Because of John’s steadfast place in my heart and life,
I have so much more strength and confidence than I could have imagined.

Yes. Even in this adversity we face.

Yes. Even in the face of terminal brain cancer.

Yes. Even knowing that this fight may be impossible to win.

Yes.

He believes in me. And I in him.

In every way.


June 27, 2017
11:43am

Copyright © 2017, Julia Meek Chambers, all rights reserved. No part of my post, writing, or words may be copied and shared without my express written permission and attribution.

Strong Together

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Glioblastoma Updates…


May is Brain Cancer Awareness Month

Go Grey In May - graphic by Aberrant Crochet

I just want to say that I am truly grateful for everyone who checks in on John and I.

Things have not been so great lately. And I’ve been really struggling this week. Some of you drop in virtually and I appreciate the nudges. They help steady me when I feel so dizzy sometimes. And because it’s been so chaotic and emotional, I haven’t been able to wrap my head around writing very much.

John’s glioblastoma has been on the move. The first signs appeared with the New Year. And his GBM never fully disappeared in the first place. He went through a flurry of uncontrollable seizure activity and blood pressure issues in February and March. I actually think it was the uncontrollable blood pressure that was causing the seizure events. Then his liver enzymes started getting too high in February, so they were discussing pulling him from the Lomustine (CCNU) because they wanted to give his liver a break. However, MRIs in early March confirmed that the GBM had become resistant to the Lomustine. So that cinched it. It’s no longer a viable treatment.

John’s NO team decided that the best course would be to do 4 more weeks of radiation to the brain, and continue with Avastin, so that his liver could take a break and then regroup after for a new chemo. Avastin has been shown to offer protection to healthy brain tissue (but not cancer) during radiation. You can’t fight active GBM successfully without a multi-pronged attack. So it definitely seemed like the wisest route. That way his liver could recover and we could see how another chemo would do after that. It was worrisome though. Radiation combined with Temodar did not hold back John’s GBM last time. Wasn’t sure Avastin combined with radiation would this time either.

Unlike last time though, John had nausea and vomiting during this recent round of radiation treatment. He lost his strength and even started to lose feeling in his right hand, arm and foot. And he experienced more uncontrollable blood pressure and seizure events. So while he was receiving the radiation, they also changed up his blood pressure and anti-seizure medicine. And they added meds for the nausea. It took about a month, but it seemed like the new blood pressure and anti-seizure meds were a great improvement and his tremor and other seizures stabilized.

As predicted, John’s liver enzymes started to decline. While the radiation symptoms were pretty awful, it seemed like his liver was recovering as hoped. In talking to other wives of GBM patients who receive a 2nd round of radation, I learned that for most of their husbands, if they lost use of one of their hands, it came back generally within 3 months. John finished the radiation about a month ago. There has been some improvement in the feeling in his hand. It’s not back yet, but we hope this is a good sign.

A week after he completed radiation, John’s liver enzymes shot up, nearly quadrupled, for no explainable reason. He hadn’t had a dose of chemo in 2 months, and the enzymes had been coming down. But suddenly overnight the enzymes skyrocketed. They ran every test they could think of and he was negative for everything. It didn’t make any sense.

So next came CT and MRI. They found what appear to be 2 small tumors, at 1 and .7 cm in size, on his liver. And because of that, he’s been pulled off of all brain cancer treatment, waiting for a biopsy to be done and for those results to come in. Of course, everyone’s worried that the spots are cancer. There was a mention in the MRI notes that there were some unusual blood vessel formations. I hold out hope that maybe these 2 spots are more weird knots of blood vessels. And that they figure out what’s distressing his liver. Nothing about the liver distress makes sense.

The biopsy is this week. And it will take 3-5 business days to get those results back. Meaning John will not even receive Avastin before the end of next week. Avastin is not like typical chemo, as it’s an anti-angiogenic. It helps starve the GBM, reduces brain swelling better than steroids and overall improves quality of life. But he will have gone a month without any protection from GBM by then. And the swelling caused by the radiation is no small thing either.

GBM can double in size every 2-4 weeks. And John’s last ABTI/MRI showed multiple seeding areas of his left brain, possibly trying to move to his right brain.

Regardless of whether he has liver cancer too, which is so super incredibly rare in GBM cases!! the glioblastoma is faster. But there are 1% of GBM cases where it becomes gliosarcoma. Needless to say, it’s worse than regular glioblastoma.

It’s just all so crazy.

And I’m struggling. I want to be positive. But it’s scary and it hurts. Deeply through my soul, piercing lifetimes of my heart.

John had 68 different appointments with oncology teams between February – April  alone, 52 of which (plus an ER visit) in Feb/Mar. Every bit in effort to save his life, and unlock the key to GBM. It’s what it takes with this cancer. If you want to live, you don’t relax. You don’t pick the easiest path. You get your ass on the road and you go. You ask every question and figure out how to meet your doctors half-way. Because they can’t do everything. You gotta be interactive or it won’t work.

And there’s so much more than just that to do. I can’t seem to keep up. Our kids help, I barely sleep and it’s still not enough hours it seems.

And all I want to do is be with my love. Not chase papers and run errands. Capture every moment. Go out to lunch and see a movie.

But crowds and sounds cause him pain right now. He’s so tired and his headaches are getting worse. He can’t help me right now.

Dear God, I love him so much.

It’s been 14 months and I still cannot believe that this is happening to us. Or that it’s been more than 3-4 months.

There are some bright spots of hope though.

John’s recovering from the stroke. It’s taken time, but the quality of his communication (with the apraxia and aphasia) is improving. Except when he’s at his most tired. Which is a lot lately. But still, the quality of his conversation is markedly different today than it was 6 months ago.

Also, our family attended the bi-annual Together in Hope Brain Tumor Conference that MD Anderson puts on for patients and their families. It was an amazing gathering of information and people within the brain tumor community. And we met other families and survivors there. The trip was difficult for John, he really didn’t feel well. But it was so good for our family.

And, John’s NO team is trying to get Optune for him. I don’t know if insurance will cover it or not. Or if he’ll receive it fast enough. But hopefully we’ll know something about that by end of next week. Optune is promising, but I have no idea if the biopsy this week could change even that. But we met a 4.5 year survivor a the conference, who’s on Optune.

So there are things to hold onto in this upside down twist of events.

I hope and I pray that somehow, this crazy set of circumstances is a divine plan to get John the treatment he needs. And that the Optune works and allows him to live a normal life. Allows him to recover. The brain is amazing. Given enough time and proper therapy and exercise, it can recover nearly every skill it’s lost. If we can get ahead of the GBM.

I finally put together a Facebook page for John and our fight against glioblastoma. It helps to tell our story a bit better in bites than I can on my blog here. If you would like to follow along, you can find that page here.

Thanks for listening. Lots of hugs. And stay safe out there y’all.

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Penny-Wise Porterhouse Steak…


Chambers Fireless Stove - circa 1920

Image credit: Wiki Commons (public domain)

I really enjoy going through old patterns and old recipes. Every time I stop by a yard sale or such, I’m usually looking for old stuff people don’t value any more, like their grandmother’s recipe box, dusty old books, or pile of crochet magazines and doilies. Or handmade bedspreads that no one wants, because they acquired holes over the decades of memories and use.

To me, looking through these things is like walking back in time. I like to think about the people who held and used these things. What their stories might be. What life might have been like for them.

I probably got this trait from my Grandma Dot, who also hung onto little unsung treasures from generations of our own family. When family passed away, while it seemed other relatives were always interested in whatever furniture and such, my grandma was the one who couldn’t bear to toss out the letters, recipes and patterns. And I totally get that.

Last year my uncle passed on to me a couple of boxes of loose recipes that were in Grandma Dot’s possession. Inside is a mix of recipes that were hers, but also recipes from other members of the family. My great-grandmother, my Aunt Hazel, and so many others. We’re not entirely sure where they are all from. I recognize my grandmother’s handwriting, but no one else’s.

There were also several recipes saved from pamphlets, advertisements, product wrappers and books.

One such interesting piece was a simple typed up sheet of recipes from the local gas company’s “Home Service Department,” circa 1930-40s. Likely a little thank you to the “lady of the house.” It also contained a little promo for the Chambers Stove and the gas-powered Electrolux refrigerator.

Ten recipes were crammed onto the front/back page, but the one that stood out to me most was the “Penny-Wise Porterhouse Steak.” (You can read the whole recipe here.)

Reading over the recipe, which mixes 3 parts ground beef with 1 part ground pork + egg, grated onion, salt/pepper and cracker crumbs – it sounds very much like a meat loaf recipe! So I’m thinking, where’s the “steak” in all this.

Until I read this, after the instructions to combine everything: “Shape to resemble steak about 1½” thick.”

And then the instructions essentially have you broil said fake-steak (aka meatloaf) in the oven until it’s good and browned. “Serves 5.”

No wonder my dad’s idea of steak was shoe leather well-done.

It’s interesting though. Grandma Dot (and both my grandpas) survived The Great Depression. Both my grandfather’s served in WWII and Korea. Their generation understood tough times and shortages. And they figured out ways to get by.

“Penny-Wise” recipes were just part of that life.

But I guess the thing that really struck me was… today it’s just meatloaf. But back then, they played it up as “steak.” Giving the dish some dignity, even if in name only.

My gut instinct is a deep aversion to putting lipstick on a zombie. Call it my Gen-X rebellious sensibilities.

But today, with all our family is going through, I think I see that perhaps they weren’t just trying to make something worthless look appealing.  Maybe they were trying to preserve their memories and experiences during an incredibly painful and scary time.

A time when I know my grandparents weren’t sure what their future would look like. What the US would look like. Here they were, newly wed and all hell broke loose in the world. I can’t imagine.

So while everyone had to adjust, it makes sense to me, from that perspective, that it wasn’t just about making a simple food seem higher class than it was.

But about keeping their chin up, their spirits healthy and still gathering around the table as a family to be thankful.

Even if it was just for broiled, “steak” shaped meatloaf.

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Friends From Adversity…


wedding-vowsWe attended the wedding of our adopted nephew today. A case of family you choose, as we don’t share blood or legal ties. His mother helped me so much through early motherhood. She kept my kids a lot more than I got to keep hers. But she’ll always be an “aunt” to my kids.

I remember the 5 of our kids (hers and mine) crowded around our Little Tikes table. I was babysitting her kids that day and fed them Mac n’ Cheese with onions. It was how my mom made the dish when I was a kid. But the boys nearly barfed. It didn’t even dawn on me that they might not like onion in their Mac n’ Cheese. I can’t help but giggle thinking about their faces.  But I haven’t made it that way ever since.

Their mom helped me so much back when it seemed I was going to miscarry my son, by keeping my daughter so I could see the OB twice a week. And then again babysitting after my car accident when my husband was gone, and I had to go to doctors and PT all the time. Between her and fellow moms from school, I somehow managed a year’s worth of medical care during my husband’s 18 month deployment.

It’s weird to think about it. Thanks to sucky medical stuff, our kids had the opportunity to cement a deep friendship. (Same as with my kid’s friends from school. Because of other mothers helping me, they got to be good friends with others.)

A car accident that left me completely numb on my left side, requiring over a year of physical therapy to get strength and use of my arm back.  And nearly losing my unborn son halfway through my pregnancy. 9 weeks not knowing if he’d live or die and somewhere around 20 weeks of weekly and biweekly appointments to get him here safely.

Two awful experiences I never want to repeat, but thanks to the kindness of other mothers, they set up a lifetime of friendship especially important to my kids.

It’s hard to believe her son and new daughter-in-law are 24, the same age I was when John and I got married. They’re in that same spot of launching into their life together. I remember it well. Life is crazy.

 

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Favorite Thanksgiving Dishes…


cornucopia-thanksgivingThanksgiving’s around the corner.  Earlier today, some of the alumni from my college group were asking about everyone’s favorite Thanksgiving dishes. Once upon a time, my alma mater represented 86 countries. It was always fascinating to hear from so many different cultural traditions, both in holidays and in food.

John and I both love to cook. While we’ve always had the traditional turkey, mashed potatoes, dressing and gravy, we’ve also developed some of our own traditions for a special holiday dinner.

Part of the tradition for us is to trot out our grandmothers’ recipes. John makes his grandmother’s brown sugar pecan pie recipe – still recorded on a paper plate. And while we don’t have the original cornbread dressing recipe that was hers, John got her to teach him how to make it once. So he’s pretty much got that down.

There’s also his grandmother’s sweet potato casserole. Which does NOT have marshmallows in it and is NOT sickly sweet like so many sweet potato dishes. It has coconut in it and it’s to die for. If he/we don’t make it, then his mom or sister do. John’s grandmother also had a sherried carrots side dish recipe that usually his sister will make.

For me, pumpkin pie was what my grandma Leona always made. She often added a dash of cloves, which I like to do too. But I prefer to use brown sugar in mine. And while I grew up with Cool Whip, the last 20 years or so I always make real whipped cream sweetened with a dab of honey.  To perfectly compliment our pies.

My grandmothers were also ones to make some type of seasonal candy. Grandma Dorothy made cinnamon candied pecans, while Grandma Leona usually made peanut brittle and sometimes coconut “Mounds” type chocolate covered candies. I want to pull those recipes out this year.

When it comes to the rest of the meal, we usually try to add variety. While my sister-in-law usually hosts, we all generally cook and bring stuff.

Some years I make cornbread, because we used to have it when I was a kid (and I love cornbread). In my version there’s less sugar. But recently, John’s mom designed a blue cornbread that is simply to die for. I love her recipe, and I think that will become one of our new traditions.

I also enjoy making decadent chocolate deserts, especially chocolate truffle pies. I used to make chocolate raspberry, chocolate mint and regular chocolate truffles pies. However, some of the flavorings I used to use aren’t available anymore. So when I make chocolate truffle pie, it’s usually straight up chocolate. I used to use Marie Callender’s chocolate pie crust for it. It was the best, but I haven’t seen it anywhere in years. So I switched to Oreo chocolate pie shells. But usually I can only find them at WalMart, only this time of year. They’re getting harder and harder to find anymore. Don’t know why.

And I often make a lime and cumin seasoned salad that is most definitely a Texas dish.

Some of my most favorite main courses at our Thanksgivings have been John’s handiwork. John’s smoked haunch of venison is amazing. And then there’s his creature feature we called deerdoveon. Think turducken, but it’s deer/dove/bacon. He’s king of the grill.

My sister-in-law is also an amazing kitchen magician. She’ll make savory vegetables, often she does the turkey (sometimes John smokes a turkey), cauli-taters and there’s never any telling what creative thing she’ll try next. Usually when it comes to sides, we all get a bit creative and try to think of something we’d like to try and bring for everyone to enjoy.

To me, Thanksgiving has always been about family coming together. We rarely watch football or do the other things that it seems so many families do. Instead, we come together for a bit to celebrate with our taste buds, and to commune. We go around the table and we talk about what we’re thankful for. Reminisce about the year. And in the end, usually we end the night with rounds of karaoke, from swing standards to rock and roll.

I’m looking forward to time together as a family. And lord knows, this year there’s so much to be thankful for.

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