Giving Thanks With Thoughtful Giving: Trigeminal Neuralgia

Meet the Mitchells. 

 

Jesse and I met in kindergarten. (I'll spare you the elementary school stories because Jesse is tired of hearing them.) Alecia and I met in middle school where she proved her ability to play the flute, while I learned my lips were the wrong shape for the instrument. So, in high school, they were both drum majors while I used my big mouth to cheer for our teams.

Photo snapped in between Jesse's happy smiles, but Alecia provided hers!

I still remember their wedding day in our home church: Alecia's red hair vibrant beneath her white veil.  Jesse's trademark grin larger than normal. Me realizing we were all grown up.

Even now, when I think of them, I see Alecia's red hair and Jesse's smile; I feel their joy and kindness; and I hear music.

They're the friends I may not have hung out with all the time, but when I did, I wanted to be my best self.  Still do. They're the kind of friends that before doing something questionable, I wonder what they'd think about it.  Not because they're judgmental, but because they're nice, good people and I'd hate to disappoint them.

Because Jesse and Alecia believe in the good of mankind, they often find it.

Jesse said recently, "I've been married to Alecia for 16 years (17 in December) and have had 19 surgeries in that span. I apologized once to her for all of this being my fault, that I'm sure she never thought of her life turning out like this. She just told me, 'I said I married you for BETTER or WORSE. This is just the worse part. It WILL get better.'"

Jesse has Trigeminal Neuralgia. It's often called "the suicide disease" because it is so agonizing that many prefer suicide to living in fear of pain's power. A small breeze, a baby's touch, or even a smile can provoke an unfathomable jolt of pain.

Jesse explains it best:

"I try so hard to not be discouraged, to keep trusting that He will provide. He has thus far. Man, have we ever been a part of some wonderful blessings and miracles.... It's getting easier to let go and for me to quit trying to be "the one in charge," because this life isn't mine. It's HIS. I try to remain positive and try to help others who become sick and feel the way I have.

This disease, Trigeminal Neuralgia (where a blood vessel or artery wraps around a portion of the Trigeminal Nerve, rubbing away the protective sheath surrounding the nerve, causing intense pain each time the vessel pulses or moves),  takes away so much of who the person once was.

removing stitches

I've had two brain surgeries to treat this disease. I had the first, a MicroVascular Decompression, in September 2009. Eight months after that surgery took place, it failed. I had a second brain surgery in June 2010 to sever the sensory portion of the nerve. 

You almost live in a cocoon, a sort of hermit, scared to death that another 'attack' will hit at any time. These attacks have been described as feeling like being struck in the head by a lightning bolt, stabbed by an ice pick, struck in the head by a cattle prod, or biting onto a live, active electric wire. Through research, actual case studies and surgeries that have taken place recently among those like me who have had the sensory portion of the Trigeminal Nerve severed, we now know that those sensory fibers can in fact regenerate and reconnect to each other, causing that pain to resurface.

Unfortunately, exactly that has happened, and I'll have a third brain surgery to cut the entire Motor Cortex and Sensory portion of the nerve, resulting in what looks like a stroke-type of condition on my face; whereby, I will have no ability to smile, no ability to chew or to open my mouth, but I'll take that over pain like this any day."

badge of courage

Not only does Jesse have Trigeminal Neuralgia, but he's also been plagued with horrific sinus surgeries and complications--which resulted in MRSA, numerous PICC lines, and carrying an oxygen machine with him.

Jesse posing with one of his many PICC lines

Although he is an intelligent, hard worker, his illnesses resulted in the destruction of his career. Alecia's teacher's salary couldn't pay all the bills of a growing family, so Jesse was forced to apply for disability. That, too, was a struggle, but he was eventually granted it. As a result, his children have no health insurance because the stipend pushed them over the limit for Sooner Care. His COBRA runs out this month and the medicare won't kick in until this summer.

The Mitchells are good, hard-working citizens.  When do they get a break? I've spent so much time being angry for them.

Yet, they express gratitude, focus on blessings, and inspire many.

Through his pain--in spite of his health--Jesse encourages fellow TN sufferers and families, inspires friends and strangers, uses Facebook for the power of good, supports his children in school activities, cheers fanatically for sports teams, etc.

And one must ask why. Why has this happened? Are these illnesses connected? Does Jesse have bad genetic luck or is there something more?

When will things get better?

Here's where we come in.

The Mitchell family has an opportunity to go to the Mayo Cinic in Minnesota to meet with Jesse's dream doctor.  Someone gave them plane tickets.  They feel this is their chance to get it right. To learn why he's had so many complications.  To have an answer so he--and his family--can heal.

"Though my family and I have struggled mightily all along, I've never given up HOPE. If you give up hope--h-o-p-e--then you have nothing. It's my daily goal to give at least one person a semblance of HOPE, to let them know that there is an end to what they're going through."

When I asked permission to tell their story, Alecia said that she was honored that I would share their stories and loves that their story shows the goodness of others.

See? Good people.

Another drastic surgery must be intimidating. If the world has to continue without Jesse's smile, so be it. Because their goodness will still be here. We need more of that.

I often want to help people, but don't want to give money to an organization that will spend it on postage stamps or CEO salaries.  If you prefer a direct approach as well, please donate to Jesse and Alecia's family here. During this month of giving thanks, please consider thoughtful giving.

Most of all, please keep them in your thoughts and prayers the week of November 18.

Like End Trigeminal Neuralgia on Facebook. Find more information here.

And just for funsies...

 High school sweeties:

Twenty year reunion:

*all photos courtesy of Alecia Mitchell 

Listen to Your Mother

Last year I heard a lot of buzz about a show called Listen to Your Mother.  Some of my favorite bloggers participated in "giving Mother's Day a microphone." I didn't attend, but I checked out performance after performance online.

I submitted this year. It sounded so cool that I submitted two different essays to two different cities.  I haven't heard about the Oklahoma City show yet, but...

Guess who has a callback to the NW Arkansas show on Saturday? 

That's right.

Me.

I'm so excited to make the first cut.  It seems like a great opportunity to grab your favorite ladies and enjoy a night out.

Check out the website for a show near you.

Or in stolen moments, check out past performances here. 

Hopefully, I'll be able to share my story, too.

Jingle Jangle

I'm not athletic or crafty, but that doesn't keep me from trying.  On the way to a 5k, I sewed ribbons on shirts.

See that ribbon? I sewed it. My son was impressed.

My friends Ange and Shannon invited us to join them at the Jingle Bell Run.  Well, they knew I wouldn't actually run, so Ange volunteered to walk with me.

But I did run--three times--during the 5K.  That's a personal record that provides bragging rights.

My pals still make fun of my attempt in high school to run a 5k for extra credit. OH MY GOODNESS. And no witness can forget the hilarious ONE DAY in the spring I went out for track. (In my defense, the boys and girls were both state champions, runners-up, gods straight from Mt. Olympus or something that year).

I don't have a good track record.

So, I'd planned to train for this event, but...I didn't.

My training buddy and I still have not met and my treadmill is used by my hubby, who WON a 5k last week, by the way.

That's Ange, Shannon, and Garrett holding me up before the race (and mimosas).

I may not be cardio-fit, but at least I'm festive.

Shirts personalized at Society Shirts. Proceeds provide birthday parties for children in emergency foster care.

Our shirts supposedly say Super Cutie or Awesome Hottie or something similar in Cherokee.  Garrett suspects Ange and Shannon tricked us and they really say World's Greatest Grandpa.
 
 

Writers Wednesday: Kid Lit Community Auction

In the wake of Hurricane Sandy, Kate Messner organized the KidLit community and created an online auction to benefit the Red Cross Disaster Relief Fund.

Whether you are a children's literature fan, an aspiring author, or a published author, there's something available at this auction that might interest you.

Check it out.

Donate.

Do good.

Confession of an Earth Mother Wannabe

Image from blog at mozardien.com

Everything that has gone into my kitchen trash this morning could have been recycled. Everything. But the recycling bin is full. Which means I'd have to empty it first.

And it's heavy.

And my back hurts.

And...I don't want to.

When I was in high school, the upperclassmen voted me Most Likely to Save the Planet. Pretty fancy title just because I wasn't a litterbug.What a hefty responsibility to lay on a teenager!  I was bound to fail.

Am I the only one who feels guilty when I don't recycle? 

We're usually pretty good around here. I mean, my son had a trash/recycling birthday party for Pete's sake.

I'm not feelin' it today.

C'mon! Let's be practical. Surely we have enough places on this big ol' planet to store trash until the end of time. The Mayans say it's December 21, right?

 If we're still around for Christmas, I'll definitely recycle all of the wrapping paper. Definitely.

Friday Favorite: Celebrate Society Shirts

Everyone possesses talent.  How one uses it makes all the difference.

When Jennifer Laws was in the hospital with her newborn twins and planning their future parties, her mind wandered to other babies in the world who were not born into such happy circumstances. Recently, she decided to use her party skills to make a difference.

Thanks to Jennifer, children who are in a local emergency shelter on their birthday will get the regulation cake from the kitchen--and they will also get a "party in a bag."  It's a kit she created that helps each child, when surrounded by strangers on the anniversary of his or her birth, understand that someone knows their existence is worth celebrating.

I love this idea almost as much as I love Jennifer's heart.

Want to know how to help?

She's funding this endeavor by creating designs that you can buy at her etsy shop. 

 

Print and iron the design yourself or pay a little more for her to create the whole shirt.

What a simple way to celebrate your little ones and help celebrate another child as well!

Any day decals:

birthday party decals:

and check out these adorable Halloween decals--just perfect for a t-shirt or treat bag:

 
Last month I witnessed the giddiness that is Jennifer on the morning of her sons' birthday party. "I love party day," she said, practically bouncing with joy. "This must be what Lebron James feels like on game day!"

Pretty accurate comparison.

4th Birthday Trash Bash!

At two, Max loved Elmo.  At three, his heart's desire was to be a construction worker.  For the last six months, though, he's declared he wants to be a trash man. So, for his fourth birthday party, we got "trashy."

The invitation:
I couldn't find any trash/recycling party invitations--go figure!--so I made my own. Max helped color my hand drawn trash trucks.  The actual invitation was a torn up flap from a cardboard box. Who needs an envelope when you can use a brown paper bag? We just stuffed the torn away paper that was not glued to the cardboard in the sack before sealing it.  It was a trash party, after all!

The decor:
Decorating doesn't get much cheaper than this. Everything was free.

Party brought to you by Maximus Enterprises

My husband and I kept wanting to pick up items that we'd left out on purpose.

How great that we can leave trash around and it's party decor?!

My parents and grandparents donated newspapers to have them "upcycled" into party decor.

I couldn't believe how much trash my family generated once I paid attention. So glad we recycle!

A trash party needs a flyswatter, right? These flowers were purchased at Dollar Tree--two for $1.

Beautiful tissue paper balls have been on the blogosphere for years now.  I decided to try them with newspaper and glam up our trash bash. I am not crafty, so I'm still impressed that I pulled these off. SO, SO easy! I'll post a tutorial later.***Update! Here's the how-to post!***

Those strings were attached to balloons.

Nothing says party like trash in crystal, don't ya think?

Those scraps of paper on the table are facts about recycling. For example, "Recycling one aluminum can saves enough energy to run a TV for three hours. In spite of this, Americans throw away enough aluminum to rebuild our entire commercial fleet of airplanes every three months!"

The food:
 What's a trash party without junk food?

 

Disposable casserole containers that had been taking up space in my cabinets were ideal serving dishes.

 

A new trash can served as an ice bucket and we served non-alcoholic "trash can punch." Check out the recipe.

This beautiful platter is made from a recycled aluminum can. No kidding!

I bought the rats and "take out" containers from Dollar Tree--both 3/$1

Check out my shirt! Our family each wore trash truck shirts with the image from the invitations.

The activities:

Dumpster Diving! Due to rain, our den became the dump.  I set out trashbags and boxes full of newspaper and recyclables. The kids chose a box--the dumpster--and dove in to retrieve candy and robot grabber arms.

The beauty of this game was that they made the mess and then used the arms to pick it up and put it in the trash can. 

 As any good trash man knows, if you want to do it right...you need a truck!

 

The amazing Josh Hutchins, owner of Tahlequah Recycling, Inc. agreed to bring Kermit, the recycling truck, for a visit.  What a nice guy! 

party guests who braved the camera

 The kids loved it.

So did the adults.

Garrett getting trashy

Max was in awe.

 I was disappointed the rain made it an "inside" party, but Max was thrilled he got to wear his galoshes!

Max treated both the truck and Mr. Hutchins with reverence. He kept his distance from both. He was the only kid who didn't sit in the seat and honk the horn.

One of Max's birthday buddies. They were born just hours apart!

But he did dump some recycling in the back of the truck. 

Loading the recycling truck is a great trick to get all that trash out of the house!

 Look at those faces! Who thinks TRI could have a side gig with birthday parties?

 Seriously, how much longer can we convince children that cleaning up is a game?!

The amazing Mr. Hutchins and Kermit show the kids how to crunch and smash boxes.

Even the little guy enjoyed the mess.

The cake:
Our birthday boy loves strawberry cake...and cookies...and ice cream...and shakes....

Reasor's bakery did a great job, don't ya think?

Max was crying because his little friend had just told him she was going to take home the trash truck from his cake. He freaked out.  What kind of mother laughs so hard when her child is clearly traumatized? At his own birthday party, no less!

blowing out the candles

Baby J loving some cake

Oh, yeah. That was one happy baby boy.

Party favors:
The kids took home the robot arm trash grabbers, candy from the dumpster dive, and cookies!

Max just discovered Morgan's Bakery's curly q's, so we sent one home with everyone.

It was a fun time. Even the little ones approved!

Baby Alexandra and Dad 

 Party Inspiration:
Cakes Like a Party: Oh my goodness. When I saw this, I knew we had to try. I showed the pictures to Max and there was no going back! His excitement lasted for months.
BellaGrey Designs: These invitations inspired the wording on Max's. Aren't they adorable? Check out the party with all of the design elements. This party has a little more of the icky idea of trash.

Getting "trashy" and recycling was a lot of fun!