A Good Punch in the Face

Image courtesy of num_skyman/www.freedigitalphotos.net

I've never punched anyone in the face...

Let's get that clear right now.  

But I've wanted to.  In those very "Ally McBeal" moments when you picture yourself following through on your basic animal instincts to lash out at anyone near you when you are injured or threatened...oh, yes...I have wanted to punch many people in the face.

the 8th grade classmate who said, "Tammie, the only reason you get good grades is because you don't have any friends".

the 8th grade classmate who wrote me a note saying that she wanted to become popular that year, and that meant she couldn't be friends with me anymore.  (yeah, 8th grade sucked).

the people who typed the anonymous letters from graduate schools and turned me down because of my GRE scores (although I'm glad you did because I never would have started dating my husband had you accepted me at THOSE schools).

everyone who worked at the Gerber Grow-Up plan because I got a letter from you in December 2004 saying that our daughter couldn't get life insurance through you...(hmmm...a rare disease does that, I guess...hence, why you were forthwith known as the Gerber THROW UP plan).

a couple of Wisconsin's 'civil servants' whose names appeared on letters declining Evie for some county services.  That was unfortunate...but, the courts overturned your decision. :P

the parents who shush their children when they ask me very logical and appropriate "children type" questions about Evie.  Your SHUSH communicates shame...and there is no shame about my daughter.  Your SHUSH is what makes her question what IS SO wrong.

the lady at McDonald's who approached me as we frantically were trying to usher Evie out of the restaurant during a wicked meltdown after a long day of traveling....you approach me and all you do is suggest fish oil for my child's behaviors?  Open the friggin' door for us and help us OUT!

the old man who told me I should have folded up Evie's white cane BEFORE boarding the plane because it was a nuisance for him.  Clearly you don't understand WHY we use a white cane...it's HOW we GET on the plane.

the eye doctors who have treated Evie as if she has no intelligence and that we shouldn't even be in your office...well, guess what...we aren't in your office anymore.  It's actually worth flying back to Wisconsin to see our eye doctor THERE, 1,800 miles from home; than drive two hours and waste our time on you.

I didn't have to, and don't have to, punch any of these people in the face.  They are of no consequence to us.  

This is a great big world, and we serve a GREAT BIG GOD and because of His victory WE have victory.

Today.

No punching required.

Written in response to writing prompt 182 on thewriteprompts.com 

We Interrupt Your Regularly Scheduled Life ~ Guest Blogging Day

Evie in the Hospital following her Wilms Tumor diagnosis in 2005

When he had finished speaking, he said to Simon, 

“Put out into deep water, 

and let down the nets for a catch.”

Simon answered, 

“Master, we’ve worked hard all night 

and haven’t caught anything. 

But because you say so, I will let down the nets.”

Luke 5: 4-6 NIV

This past weekend I had the pleasure of attending a conference in Redding, CA called GrowU.  One of the "top billed" speakers of the event was Chris Brown, who is one of my favorite storytellers because he has a tremendous gift for bringing scripture to life.  

On Saturday night he retold the story of Jesus choosing his first disciples.  And, when Mr. Brown re-tells this story, you suddenly realize how God chooses us today in the very same way as He chose people back in biblical times.  

When you read Luke 5, you read about some fishermen who are cleaning their nets and Jesus asks Simon to take him out in his boat so he can speak to a crowd who has gathered on the shore.  Now, fishermen fish at night, which means, if Simon was in and cleaning his nets, he had just been out fishing all night long.  

Working hard.  

He was exhausted. 

And Jesus comes along and says, "Hey, can you take me out in your boat?"

Ugh.

Continue reading on Comfort in the Midst of Chaos...

"Come on, God! Let me Worship in Peace!" ~ Guest Blogging Day

God is spirit, and his worshipers must worship in the Spirit and in truth.” John 4:24 NIV 

I found myself in unfamiliar waters on Saturday of last week.  We had tickets to see Chris Tomlin's Worship Night in America here in Reno and we had been looking forward to it for MONTHS!

However, after a sleepless night with one of my elderly cats who was having...eh-hem...intestinal issues, and a long day of watching BOTH my cats refuse food; my husband also wound up on crutches with a chronic foot injury, and I was looking at my jam-packed schedule trying to determine when I'd carve out time to get my cats to the vet (hoping it would NOT be to put a cat to sleep!).

I was pretty ticked off with the whole world...

Continue reading on Comfort in the Midst of Chaos... 

Mrs. Hefty and Mrs. Ulrich Go the Museum

Today my friend Katie took Evie to breakfast and then for some playtime with her kids, so my mom and I enjoyed a morning walk along the Truckee Riverwalk in Reno, and then we took in the Nevada Museum of Art.

Our first stop was Riverwalk, and I must say, it was beautiful. Not only are the trees blossoming, and the cold waters rushing, but the ducks and birds are plentiful and playful.  If anyone questions the beauty of Reno; they need not look much farther than the heart of downtown with the dazzling architecture, blue skies, abundant and diverse bridges arching over the rushing Truckee River...and the ART along the way...fabulous~oh, and did I mention that the entire town is surrounded by the snowcapped mountains of the Sierra Nevadas?

We new our time was limited at the river, however, since we had to get to the museum and give ourselves enough time to take in the various collections on display.

The first collection we took in was appropriately inspired by sightings of random UFO phenomena.  It was well done with alternating portraits which, at first glance, seemed ordinary, but upon closer observation contained hidden alien or UFO figures.  In between each portrait was a photo of flying saucers, or, mysterious orbs and discs that were seen floating in the sky.  I loved it!  Very X-Files.

Another remarkable collection were works of art by Maynard Dixon.  I recognized several of the pieces as ones that had been on display during the Tahoe exhibit I fell in love with at the museum a year ago.  Mom and I now feel like we are EXPERTS on Maynard Dixon...and, well, his entire family history as well as his love of the Tahoe area.

I had to pull out my phone and do a quick Google search to answer a question I had about another exhibit, the collection of John and MaryLou Paxton.  As we were leaving this exhibit, we saw embossed on the wall, "In Loving Memory of Bill Paxton, 1955-2017").  Sure enough, these were late actor Bill Paxton's parents.

Go figure, but our lovely trip to the museum gave me a new idea for what to do during our annual trip to Las Vegas with our friends this fall.  Seven Magic Mountains is a two year display in the desert south of Las Vegas.  This fall will be our last chance to see it before it's gone!  It looks absolutely magical!!!

Finally, The Altered Landscape is not to be missed.  How can we deny that our very existence has impacted the world both for good AND bad.  God made an unfathomable universe, and yet He plopped us here on the planet earth to inhabit it, tend to it, and live off it.  We marvel at its beauty, and we tremble at its brutality.  We delight in its liveliness and we fear its inevitable destruction.  But, we are promised that there will be a new Heaven and a new Earth and that those will last forever...unalterable, and indestructible.

Another fun day with my mom here visiting.  It will be hard to have her leave next week, the time always go by too quickly.  Evie has been giving her a good butt-whooping at their annual Spring Break Bunco Tournament too.  Every morning I get to hear Evie ringing the Bunco Bell and announcing her triumph over G'ma Jack.  :)

As my closing thought, and for your viewing pleasure, you can enjoy the sight and sounds of the Truckee River today.

A Much Needed Day at Lake Tahoe

So, this is a "trial run" at updating my BLOG with just a daily activity kind of post.  I'm attempting to leave Facebook and will be trying to keep people updated on our exciting events in the Wild West writing about our Hefty Adventures here.  This way I can focus on writing more in-depth rather than "just the facts".  I've found that Facebook is no longer the place I want to spend my time, and it has a way of drawing us in and AWAY from the REAL WORLD around us.  We need SKIN!  We need EXPERIENCES...the virtual world messes up my mind and I forget how many things I have to be thankful for.

Like my happy place...Lake Tahoe.  Today we left town at 9:30 AM and were sitting down to lunch at The Gunbarrel in South Lake Tahoe at 11:00.  We certainly beat the rush.  It was like a little sleepy town.  There was outdoor music and fire pits, but we elected to eat indoors.  (We weren't really dressed for outdoor dining at this point in the season.)

After lunch we drove around the south shore of the Lake Tahoe toward our favorite, Emerald Bay.  We had yet to see the damage from the big fire they had there last fall, and boy did it clear a view of Lake Tahoe like we had never seen before.   The vista point at Emerald Bay was un-shoveled, but that didn't stop us from climbing up on a good 4-5 foot tall snowbank to walk toward the overlook.  It was beautiful, chilly and free of BEES!!!

Our drive along the southwest shore to the north took us through the winding roads where snow piles were, at times as tall as the street light poles!  We saw the trees that had died after they came crashing down the mountainside after the heavy, intense snowfalls of this past winter.  It was amazing, and awe-inspiring to consider the power of the snow and water and how they can fell a tree or dislodge a boulder which has stood strong for decades.

This photo is courtesy of my mom!  Great shot!

Evie was a peach during our drive.  She wanted reassurance that I wasn't about to sneak in a shopping-stop on her...she HATES SHOPPING!  No, I assured her, this was just to take in the beauty of the Lake.

And that is just what we did.  We arrived in Tahoe City and mom got out to take pictures of the dam by the museum where the lake feeds the river.  Just a year ago, that bed lay dry, but not today.  It was gurgling and churning and as blue as blue can be.  Turquoise, even.

Also my mom's handiwork.
The photo...she didn't build the dam.

As always, Lake Tahoe was a good get away for me today.  After the stress of dealing with an ailing elder kitty (our little Nori), I needed a day to take in God's beauty and to remember His constant presence in our lives, and just how much He loves us.  After years of drought, He has once again brought rebirth and renewal to Lake Tahoe...would He not do the same for us?

Fight Night ~ The Battle with Braille

Ladies and gentlemen, welcome to The Ring! Tonight we will see the anticipated match-up of Hefty verses Braille.  This highly anticipated fight is brought to you after years of training, and lots of education, sweat and tears.  The opponents are in their corners and reading to come out swinging; so get ready for an exciting battle.

Bong!  Round 1:  

I heard it first at the Parents of Visually Impaired Pre-Schoolers conference, "Start Braille early."  It will be a challenge, but we need Braille in our arsenal of weapons as our child is at risk of losing her vision.  

Jab, jab...

No problem.  We have a great system and are already learning tactile discrimination in our home visits from the Vision Specialist.

Thwack...

Easy peasy.  

Floored.

Better get some water...I'm already sweating.

Bong!   Round 2:  

Oh, yeah.  We are rocking you, Braille!  I'm even using sidewalk chalk to make Braille cells in our driveway and having our daughter jump to different letters to show-off her awesome memorization of the Braille code! 

Jab, upper-cut...

Another new TVI this year?  Hmmm...it's tough to learn when the teacher isn't the same each year...

Wait!  It's October now and our daughter hasn't had any Braille services yet this school year?

Ooof!  Stars burst in front of my eyes.  I shake the cobwebs from my head.

It's okay.  It's okay.  Just got a phone call and the district finally found a teacher.  Her services will start soon again and we'll be caught up.

Saved by the bell.

I need to towel off...the sweat is running into my eyes and I can hardly see straight.  That punch landed right where it hurt!

Bong!  Round 3:  

So, 90 minutes of Braille instruction a week...and it's hard to spread them out because the teachers are pulled to so many schools and over-worked and hard to find, so we're doing ALL 90 minutes at once. How many 6 year olds can stay focused for 90 minutes on BRAILLE?  

Ouch!  It feels like my nose just exploded.  How did I not see that coming?

BUT at least we're getting services, right?  I should be happy about that.  Grateful.

End of the school year...saved by the bell again.

I stumble to my corner and sit wearily on my stool.  This Braille is a tough opponent.  I need to build my strategy better.

Bong!  Round 4:

Yeah...that's right.  I'm coming for you Braille.  I'm taking a class on-line so I can learn all about you and THEN we'll see who will knock out WHOM!  

Got my own slate and stylus.  Look at me!  I know my stuff!  I'm at the head of the class.  Now I can help my daughter with her homework and we will be FINE!

Jab, cross, upper-cut.

Boom.  Floored ya, Braille.  

How you like momma now?

I strut over to my corner; don't even need to sit down, I'm on FIRE!!!

Bong!  Round 5:  

There's my girl...she's getting 30 minutes A DAY of Braille.  She still can't read it with her fingers very well, but she's learning the code like a champ!  We're Brailling her class Valentines and she's loving it.  

Speed Bag...look at us now!

Jab, jab....Jib-Jab!

Hmmm...you're surprisingly strong, my opponent...and we're caught in a CLINCH.  

The ref calls it, and we hear the bell.

Bong!  Round 6:

New state, new rules.  They "suggest" a school for our daughter that has more students who are learning Braille.  I say, "No.  She's already made friends here, she's already bonded to her teachers.  We just moved her half way across the country.  No way.  That's not inclusion." 

Okay then...30 minutes of Braille a week.  Wait, a WEEK?  Well, ummmm...okay....I guess we'll just work harder at home.

Jab.

Would that type of instruction be acceptable for learning to read print?

Bam!

Would that amount of time be okay regarding any other GENERAL education requirement?

Thwack, wam!

Now we've moved it to 60 minutes every OTHER week?  

SLAM!!!!

"She's behind.  She's not learning it.  She's not practicing."  

I'm dizzy.  I'm stumbling.  I can't form the words that I need to express how I'm feeling.

Saved (?) by the bell....

I crawl to my corner.  I'm on the floor with my arm draped on the ropes.  My coach is pouring water into my mouth and it runs down my chin and bleeds onto my top.  

I should have fought harder.  I should not have caved so quickly three years ago.  But now it's been three years, and the pattern has been established.  NOW, she's having to do so much to stay on top of her other classwork that I don't blame her for not wanting to work on this.  Why WOULD she prioritize learning something for a teacher she only sees two times a month at most?

I should have trained harder.  I know how to advocate.  But, when I'm fighting SO many battles for things like medicaid and good doctors, then some of the battles get written off as "the least of my concerns for now."  

A parent responds to my call for help from an on-line support group, "Of course they moved her to 30 minutes a week because no one can learn anything in that time, and eventually you'll stop trying, and THEY can stop teaching it."  

Another parent says their child had 60 minutes a day at my daughter's age...another says 90 minutes a day.  A DAY!

"Don't give up on Braille...you can't use technology when the power goes out."

Yes, yes...all so true.  And all adding to the cacophony in my brain.

How many times did I get hit?  Can I stand up again?  I really just want to close my eyes and go to sleep.

Bong!  Round 7 is about to begin...and I'm spent.

Is It Meaningless or Is It Success? Guest Blogging Day

To the person who pleases him, 

God gives wisdom, knowledge and happiness, 

but to the sinner he gives the task of gathering and storing up wealth to hand it over to the one who pleases God. 

This too is meaningless, a chasing after the wind. 

 Ecclesiastes 2:26 NIV

We are digging into Ecclesiastes 2 at our church and I couldn't be more fascinated by it.  King Solomon, who wrote the book, would have been considered "successful" by most worldly standards, especially at that time in history.  Yet, in this memoir, you find that he has deemed most of the riches he has amassed, the hours he toiled, the wives and concubines he had claimed...he realized that it was all MEANINGLESS and brought him no closer to any sort of joy in his heart of hearts. 

In reading through his dilemma, we start to wonder for ourselves, WHAT IS SUCCESS?  

As a mom, a wife, a writer, an advocate, a teacher, daughter, citizen...where will I find my scale that shows me how much JOY or SUCCESS I have achieved?  

I'll be talking more about this topic in my future posts, I'm sure, because pride and success is something I definitely struggle with~but, yesterday afternoon I had the SWEETEST aroma of "success" that I wanted to share it and give God the glory.

Continue reading on Comfort in the Midst of Chaos...

Stop, Think and Feel ~ Guest Blogging Day

Whoever is patient has great understanding, 

but one who is quick-tempered displays folly.  

Proverbs 14:29 NIV

God has been working on me and my patience as I've gotten older. He continues to show me more and more of how foolish I appear when I am angry. A recent sermon that I heard at our church was on the topic of anger and how to rid your life of anger. It was tremendous because the most important thing I gleaned from that sermon was the fact that my ANGER is ALWAYS the band-aid on top of a different emotion.  

Take for example my experience recently in trying to start a dialogue with a number of different people in our state assembly or even those in my own city regarding Rare Disease Day. I had sent in my proclamation request to the state in the month of November and had e-mailed a number of different people in the middle of January trying to drum up enthusiasm for the event. However, I found that I wasn't getting responses from anyone!

I was so ANGRY. I had that feeling of, "Of course, here we go...no one cares."

Continue reading on Comfort in the Midst of Chaos...

When a Friend Speaks the Truth ~ Guest Blogging Day

Kathryn with Evie

Many are the plans in a person's heart,

but it is the Lord's purpose that prevails.

Proverbs 19:21 NIV

I was driving home from the hospital with my baby girl in the car.  My heart was racing and my blood pressure was high.  How could God do this to us?  Just when we had reached the finish-line of chemo...boom, another punch in the gut.

I dialed my friend Kathryn and she answered.

"Can you believe it, Kathryn?  We just finished chemo and now she has pneumonia?  Oh my gosh, are you kidding me?"  I say in response to her, "Hello".

"Tammie Jo," she replied, "This is your life...stop waiting for it to change."

Continue reading on Comfort in the Midst of Chaos...

Preparing for the Flood ~ Guest Blogging Day

Mount Rose in Reno Nevada

Trust in the Lord forever, 

for the Lord, the Lord himself, 

is the Rock eternal.  

Isaiah 26:4 NIV

Last week my family arrived back home to Nevada from our vacation in Florida with just enough time to make a run to the grocery store for food and supplies before the torrential rains hit Northern Nevada and California.  On our first week "back to school" after winter break, our first day was cancelled, the following two days consisted of late starts due to closed roads which had flooded and high schools being turned into shelters for evacuees, and icy roads as the temperatures were dropping and still more precipitation was falling.  School was again cancelled on Thursday and we had another delayed start on Friday.

Continue reading on Comfort in the Midst of Chaos...

If You Don't Hate Christmas Yet...Guest Blogging Day

If anyone comes to me and does not hate their father and mother, 

wife and children, brothers and sisters

--yes, even their own life--

such a person cannot be my disciple. 

Luke 14:26 NIV

I know, I know...this doesn't SOUND like the start to a post about Christmas-but it's a message that God has been giving me repeatedly in the past week.

It READS as though it's a message of hate...

It READS as though it's contradictory to a commandment about honoring your father and mother...

What it really IS, however, is a statement about how much we have to GIVE UP in order to BE a Christ-follower.  

However much we love our family- We need to love God more.

However much we love our pets-  We need to love God more.

However much we love our job-  We need to love God more.

We need to love God MORE.

We need to love God MORE.

We need to love God MORE.

This is the repeated message that God is delivering to me this holiday season.  Whatever I love in my life, I must love God more.

Continue reading on Comfort in the Midst of Chaos...

Why it's HUMANLY Impossible to be the Parent of a Child with Special Needs ~ Guest Blogging Day

"See now that I myself am he!

There is no god besides me. 

I put to death and I bring to life, 

I have wounded and I will heal,

and no one can deliver out of my hand."

Deuteronomy 32:39, NIV

I can't do this.

I wish I could run away.

I am FAILING at this.

I give up.

I have thought these thoughts before, and perhaps I may again, and it's only through the grace of God that I can get up each morning and muster the energy to make the coffee, shower, smile and go bravely into a brand new day.

I do this for my daughter, my husband and my God.

I do this because I KNOW for a FACT that I AM A WINNER...and I'm ONLY a winner because Jesus Christ died for me and conquered the grave.

BUT WAIT! Let's take a step back.

Why is my life so hard that I may have thought the thoughts that I listed above?

Continue reading on Comfort in the Midst of Chaos...

SMART Goals for Salvation ~ Guest Blogging Day

Image Courtesy of stockimages/freedigitalphotos.net

Therefore, there is now no condemnation for 

those who are in Christ Jesus. 

Romans 8:1 NIV

As parents of children with special needs, we will often become familiar with the acronyms for so many educational "catch-phrases" or fads. One that I've been looking at lately: SMART Goals. While the term is attributed to a 1980's business writer, it's often also used in education to teach students how to set goals, both short and long term.

Here's how SMART works. When you're setting a goal, you want it to be:

S: Specific
M: Measurable
A: Attainable
R: Relevant
T: Timely

Okay. This looks great when you're talking about a goal like finishing a paper for a class, or losing weight by a certain point in time. But, what about our biggest goal? What about that ultimate goal we know is waiting for us at the end of our life?

Heaven.

How do we set the right goals in order to get to Heaven? What do we need to do?

Continue reading on Comfort in the Midst of Chaos...