Friday, May 30, 2014

A Little Grumpy~Favorite Fridays


We are getting closer and closer to moving day.  In just three weeks the moving truck will pull up outside our house and pack our memories up in a whirlwind of bubble wrap and newspaper.  
It seems like I just started my Favorite Fridays post, which details the things that I will miss about this Madison suburb in which we have lived for the past decade-plus.  
But time continues to tick by, and soon we will be settling into our home out west. Before we go, I have a few other "favorite things" to chronicle about the Mount Horeb, WI area;
The Grumpy Troll, New Glarus Brewery, Botham Vineyards, and Wollersheim Winery.  
These four destinations, all close to, if not in the center of, Mount Horeb have become favorites of my family.  Their uniqueness, quality of product, and memories that they've brought to us are unmatched.  Whenever we have out of town guests, you can rest assured that we will bring them to at least one of those stellar places, if not more.
While The Grumpy Troll may be a microbrewery, with my favorite brew being the Spetnaz, my favorite thing there is the Grump Chips.  All of the food, actually, at the Grump is, is out of this world.  As a rule, , when Jeff worked on the road, I would call in our take out orders and he could pick it up on his way home.  They recently added a gourmet pizza parlor upstairs, and as good as that is, I'd choose to eat downstairs any day of the week.  
We made up the game "Evie Trivia" when we were there once...they have trivial pursuit cards on the table, and we'd draw the card out and make up our own questions..."Who calls Evie Jo 'Sunshine'?"  She'd say, "Grandpa Dick."  "Correct!"
New Glarus Brewery is perched atop a hill on the outskirts of the Swiss town of New Glarus, WI.  Being in New Glarus, or at the brewery is like being transported to  a little town in Switzerland.  As a matter of fact, the weekned that we move is the celebrated Polkafest in New Glarus...one of our favorite events.  
The most popular of all New Glarus brews is Spotted Cow...however my favorite is Moon Man.  Moon Man, in my opinion, puts Blue Moon to shame.  
The brewery, which recently completed a rebuild, is worth a trip in and of itself...often hosting live music, and always worth the cost to "taste."

Wollersheim, I'll admit, is somewhere that I haven't been lately; but after THEIR reconstruction, I found that I could enjoy time on the terrace, with Prairie Fume and some cheese, while Evie played quite contentedly in a sandbox just next to our table!  I recall it being one of my most hopeful days of her young life, because her sensory issues were at their height and I rarely could relax for even a half hour without having to keep her entertained.  Put her in a sandbox, however, and she could play for an hour without complaint.

Finally, Botham; much smaller in distribution than Wollersheim, but actually more my style.  We have enjoyed concerts in the barn on brisk fall days, warm days overlooking the rolling hills of the countryside on the terrace, and personalized Evie-Jo shows on the stage when live music wasn't available.  
My favorite of the Bothem wines?  Probably the Finis or the Riesling. 
I plan to pick up a few bottles for mom and I to enjoy each night as we road trip out to Nevada.  I'm hoping that Norm and Rita will ship us some bottles as birthday or Christmas gifts too.  *hint, hint*

My Cup Lifted, the name of this blog, originated from my love of wine, and my love of the life with which  God has blessed me.  I lift my glass to Him, to this beautiful town, and to all our friends and family say proudly, as the Hefty family has taught me:
Gsundheit!

   


 

Thursday, May 29, 2014

Pebble In Her Shoe

Image Courtesy of Thepathtraveler/freedigitalphotos.net
Change...
Brings discomfort,
Brings fear,
Brings a hunger for simplicity.
Change...
A thorn in her side,
A pebble in her shoe,
A pea under her mattress.
Change...
Reveals strength,
Discovers courage,
Unearths the unsung hero within.

Written in response to the writing prompt Pebble In Her Shoe ...

Wednesday, May 28, 2014

You May Have a Child with a Rare Disease... WAGR Wednesday


Celebrating Evie's Surviving Cancer
  • If you think every occupation ends in "ologist," (chefologist, cashierologist, mechanicologist...) you may have a child with a rare disease.
  • If you've driven through a blizzard to get to a specialist appointment, you may have child with a rare disease.
  • If a comment from a stranger didn't bother you yesterday, but today that same comment made you want to punch a wall, you may have a child with a rare disease.
  • If you've ever been asked what your child's life expectancy is, you may have a child with a rare disease.
  • If you've ever been reimbursed for travel to a place like the Mayo Clinic, or the National Institutes of Health, you may have a child with a rare disease.
    Sleep Study at the NIH
  • If you've ever had to "fire" a specialist who cared for your child, you may have a child with a rare disease.
  • If you have files labeled:  IEPs, Medical Bills, Insurance, SSI, Eyes, Kidneys, Cancer...or other similar labels, you may have a child with a rare disease.
  • If you've ever felt like you're in a three ring circus when you take your child to the ER, you may have a child with a rare disease.
  • If you've ever felt so close to an on-line support group that you consider many of them family, you may have a child with a rare disease.
    Me and My Gorilla Sister, Julie
  • If you've looked at your child's milestones as tiny miracles when to other parents they might be "just part of growing up," you may have a child with a rare disease.
    Evie, blazing her own trail


Tuesday, May 27, 2014

How this "Jacked Up" Mom Found Freedom at Bratfest~Guest Blogging Day

Evie and I are in the photo on the lower left, I have a cowboy hat on...right by the gate...
“Do not store up for yourselves treasures on earth, where moths and vermin destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moths and vermin do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also."  Matthew 6:19-21 NIV
 
Have you ever had one of those days when God gives you a very clear message?  It's actually more than a clear message; it is a repeated message told to you over and over again.  It's so clear that you want to throw your hands up and say, "Okay, okay!  I get it, already!"

That happened to me...this past Memorial Day weekend...at a festival founded on the celebration of...

Bratwurst?
Let me set up the story a little for you first.

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

Friday, May 23, 2014

Saturday Morning Coffee~Favorite Fridays


One of the Hefty Traditions, dating further back than I know, is gathering for Saturday Morning Coffee.  
Every Saturday morning, even in sub-zero temperatures, Jeff's parents, uncle and our family get together at one of our houses to chat over a few cups of coffee.  On special Saturdays we even might have other aunts and uncles join us! 
Pre-children, Saturday Morning Coffee was pretty much filled with discussing topics of importance in our lives:  work, homes, plans, politics, and headline news.  Once we had children to entertain, we incorporated some games like wii or eureka into the mix.  
The food at on Saturday mornings is always delicious.  I sometimes make scones from scratch, or there might be breads, muffins and rolls....but a really great treat is to have a yummy Kringle.  (Will they have those in Reno?  I don't think I'd even heard of a Kringle until moving to Wisconsin.)
Whatever we do, and whatever, we eat is not as important as the tradition and what it signifies.  
Saturday Morning Coffee is one of the things that makes moving to Reno a difficult decision.  Jeff and I wanted to live in one of our hometowns so we would have family nearby.  The close relationship that Evie has with both sets of her grandparents, and even her great-grandma, is evidence of that closeness in proximity.  
But there are a couple reasons that making this move is also important to us and to our growth as a family.
First, as amazing as both our families are, God is the ultimate priority in our hearts.  As much as I used to say we could never leave Madison because of the wonderful doctors, educators and our families, I realized when this opportunity presented itself that our faith must be bigger than our fears.  If we have the strong faith we say we do, then we need to show it by going where God sends us.  
Jesus asks that we take up our cross and follow him...and sometimes that means leaving the comfort that we have built around us.
Second, this will take our marriage, our family, to another level.  Jeff and I need to see what we, as parents, partners, and individuals can do for our family.  When Jeff's parents first wintered in Florida, I'll admit that we were a little scared to see how we could handle things without our built in "back up".  We would need to find a sitter for hockey Saturdays, and we'd need to figure out how to always pick Evie up from daycare on time.  That first winter, when we accomplished all of this, and when we saw that God provided all of the answers to those questions... I think we realized for the first time that we ARE good parents!  
We never knew what we were capable of because we never had to try anything different.
Saturday Morning Coffee is proof that family values still exist.  It's about coming together at a given time each week to catch each other up, and build each other up.  We are sure to FaceTime in whenever we can (although the 8 o'clock CST start time will be a challenge).  And we will always look forward to it when we are home for a visit.



Wednesday, May 21, 2014

Going Gorilla~WAGR Wednesday

Photo Courtesy of Photokanok/freedigitalphotos.net
Some of the most amazing people I have ever met are Gorillas...

But what does that mean?

This is a question that comes up usually after a new family has joined our support group and has been interacting with our WAGR support group for a few months.  What is a "Gorilla Mom" or "Gorilla Dad"?

We, the parents of children with WAGR/11p Deletion Syndrome refer to ourselves as Gorilla Moms and Dads.  This stems from the Disney movie Tarzan  (1999) where the gorilla mom, Kala, fights ferociously to protect her infant. Disney was pretty accurate in terms of how far gorilla parents will go to protect their young.
Because they are sociable animals, gorillas try to protect one another from potential danger. Adult gorillas commonly risk their lives to defend their young from poachers and other dangers, and often die in the process.(accessed at http://saveagorilla.org/60-Questions.html 5/7/14).
Because we are protecting our children who are quite unique, and because we often have to educate doctors, teachers, and therapists; and also family and friends...Because we are often the "experts" on our kids; we have to protect them and will often do that at the risk of "losing" some of our own dignity.  

It may be that the school isn't allowing our child in the mainstream classroom as much as they should be.  It may be that the doctor says, "No, we don't DO antibiotics for 14 days...we'll do 7."  It might be that the county has denied our child for services that will help him or her learn to process sensory input better.It might be that the nephrologist has said that the 80th percentile for blood pressure is fine; why increase the medication when the blood pressure is elevated if it's in the 80th percentile?

As a Gorilla Mom, I have wept in front of the Circuit Judge when pleading our case for services.  As a Gorilla mom, I have written letters about getting better standards for the bus that carriers our children with special needs to school.  As a Gorilla Mom I have switched doctors, and I have requested appointment documentation to be re-written so as to reflect the correct information.  As a Gorilla Mom I have tried to explain to people WHY the "R" word is hurtful, 

I can't tell you the number of times that the Gorilla Moms and Dads in our WAGR support groups have solved problems with one another, shared information that has led to tremendously positive outcomes for another child with WAGR, or just shared tears and prayers for one another.  When Evie was diagnosed with Wilms Tumor back in 2005, (Facebook was not around yet)...I sent a message to our WAGR Yahoo Group, here's what it said:
Subject:  The bad call
I just got the call that Evie has Wilms.  I don't know what to do.  I don't want my baby to go through this.

We were admitted to the hospital that night.  A day later, when all the responses I got were printed onto paper, I think I counted the number to be in the 30's.  They were things like, "(Insert Name) had it when he X months old and he's X years cancer free."  Or, "(Insert Name) had X chemo and X chemo for X weeks and is now X years cancer free."  

You see, our Gorilla Moms and Dads, while many are thousands of miles away, and we may never ever meet them face to face on this earth; we have a bond that is indescribable.  Our bond knocks out language differences, rises above political or religious affiliations and tackles any socio-economic separations that might exist in "real life".  That's why I can never wait to get to the next WAGR Weekend; so I can hear their voices, see their faces and hug them in person.  

I'm so blessed to be a Gorilla...

Tuesday, May 20, 2014

Hey, Jude?~Guest Blogging Day

Last week I wrote about my wondering if my daughter understands how much Jesus loves her, and if she truly “gets” that he is her constant companion and shepherd; loving her and protecting her at all times and in all circumstances.  I hadn’t necessarily intended to carry on with that “theme” this week, but I sort of stumbled into it.

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

Sunday, May 18, 2014

2 Good 2 Be 4 Gotten ~ Favorite Fridays



There are so many parks in Mt. Horeb that I can’t even begin to tell you about all of them.  In fact, I can honestly say that there are likely some parks that I don’t know about and haven’t visited.  Still, on this Favorite Friday, I would like to write about a few of my favorite parks.

One of my favorites is Grandma Foster Park on Main Street.  
There was one summer that Grandma Foster’s was our park of choice.  There wasn’t a huge hill to go up or down and that was beneficial considering Evie was riding in a wagon at that point in time.  The slide was often in the shade, and that helped it stay cool as opposed to heating up in the late afternoon sun.  There weren’t too many challenging ladders or bridges at Grandma Foster’s as there were at other parks, and that helped considering Evie’s delayed walking and unpredictable clumsiness.  Grandma Foster’s was a simple solution for the days when we just needed to “get out” and break up the monotony of a day.
Another of our favorite parks is Boeck’s Park by the Mt. Horeb pool.

When Evie was REALLY little we called this park Green Park because the play structure has a lot of green parts to it.  There is a steering wheel atop the structure and Evie used to pretend she was driving a bus.  We would sing either “The Wheels on the Bus” or “Get on the Bus” (by the Dooblebops) as she steered her way through her town. 

There’s also a little “window” with a ledge underneath the play structure; we’d often pretend we were shopping and checking out at that window, or we’d pretend it was the window at a fast food restaurant.  We stopped going to Green Park once Evie got old enough to want to swim at the pool.  It was just too difficult a fight everyday to be at the park and have her want to be in the pool.
Of course, our number one park in Mt. Horeb is the ever popular Grundahl Park.


Not only is it the largest park in Mt. Horeb, but it boasts some of the greatest summer activities.  Relay for Life is at Grundahl each year, our family reunion is always at Grundahl, Summer Frolic takes place there, and I’ve held many a birthday party for Evie at Grundahl Park over the years.  Another awesome activity at Grundahl is the Wednesday Night live music in July.  It’s like a mini-version of Concerts in the Square at the Capitol in Madison, only without the crowds and without the parking nightmare. 
 
In addition to the large play structure (complete with a twirly-whirly slide), Grundahl also has an AWESOME couple of hills to roll down, and enough wide open space that we could fly kites there without too much danger of getting our kites caught in trees.  Sometimes, when we had enough energy to do so, we would even “run the bases” at the softball diamond.

I know that Reno, (and the suburb we will live in called Sparks) will have parks.   

Somehow, though, I know that they won’t seem as wonderful because they won’t have the memories attached to them of flying Sesame Street kites and watching all of Evie’s first “independent” climbs up ladders and stairs.  If I weren’t opposed to defacing public property, I would gladly carve into each of the play structures at our favorite Mt. Horeb parks:

2 good 2 be 4 gotten

Wednesday, May 14, 2014

When Life Doesn't Stop for WAGR - WAGR Wendnesday

I just lived through one of my biggest fears; having a cycle of migraines while also being a full-time Mommy.

Having a child with high anxiety (a fabulous WAGR trait), I knew that my being "down and out" with a migraine head ache would not be easy.  I was right!  *shocking!*. 

In the past month and a half we have:  bought a house, sold a house, moved part of our family to Reno while part of the family stays behind to wrap things up, seen oncology, endocrinology, ophthalmology, nephrology, and cardiology, had Evie's ASD repaired, packed boxes, had Evie's IEP, therapeutic horseback riding...I'm getting anxious just READING all of this!

The MOST difficult part of WAGR is that the world doesn't stop spinning when your child has WAGR ( I actually think it spins faster, and that's why there aren't enough hours in the day!)

So , how do we handle it?  People say, "how can I help?"  Well, I don't know...how can you?

This past month and a half we got creative...and I kind of "enjoyed" thinking outside the box.  For example, Evie is motivated by BOOKS...some people reward with food (don't do that with a kid with WAGR!), some are motivated by TV time or iPad time...well, for Evie, it's books.  But reading 7 stories at bedtime when I was in the middle of a migraine just didn't work.  Instead, we typed out a few of Evie's favorite books (God bless Peppa Pig) and e-mailed them to Jeff so he could access them and read to Evie over Facetime!  

I also had to say "no" to some things and realize that getting healthy was more important than being a volunteer outside of my home.  I cut out blogging for the most part, had to say "no" to some requests to take someone into Madison who I sometimes took grocery shopping, and I stopped packing for our move all together.  I even scaled back my exercising!!  I had to really prioritize what was necessary to get through this medical setback for me.

Did I get Evie's follow up appointments scheduled yet in Reno?  No...that is apparently something that I'm meant to do later.  Did I pack a bazillion boxes as I had been ?  No...instead I realized that I needed to rest and conserve my energy for the time I needed to be with Evie.  So, I put in my notice to leave work permanently this Friday so I could give myself "room to breathe".  

So, sometimes, when the world feels like a heavy burden, we as parents need to say, "I can't do this; I must take care of that."  We need to be okay with not being "superwoman" or "superman" for a while, because that's not what all of this is about.  

Have you ever heard the story about how geese fly, and what happens when one is hurt or tired?  You can read it here:  The Goose Story .  The leadership team for the International WAGR Syndrome Association knows this story well.  We are all busy people who have all the other stuff going on in our lives besides "just WAGR".  We understand that and we "honk" to one another when we need help. 

It's hard, but I've learned to "honk" for help in my own personal life too.  Do you need some help to stay aloft with the rest of the geese in your life?  Do you feel like you need some time to drop to the back of the V-formation and ride on the "lifting power" of those in the front?  Then HONK!  The first time you "honk,"  you might feel awkward about taking the break; but you'll start to recognize those "honkable" times, and you'll start to see and identify the co-pilots in your life a lot easier.  The others around you will learn more about you, and you'll learn more about them as you start to take turns helping to lead the gaggle of geese. 

No, life doesn't stop for WAGR; but hopefully we will find the support we need which will help us coast through some of our roughest days.

Tuesday, May 13, 2014

One of those "Never-Forget to Always-Remember" Moments~Guest Blogging Day


Follow the pattern of the sound words that you have heard from me, in the faith and love that are in Christ Jesus.  By the Holy Spirit who dwells within us, guard the good deposit entrusted to you.  2 Timothy 1:13-14 ESV
It was a little over a year ago that we were driving down the highway in Florida.  We had rented a car for our trip down there; it was a convertible.  Evie and I sat in the backseat together while Jeff drove.  We had the radio cranked up so we could hear the music over the rushing wind.  That's when I had one of those moments; those "Never-Forget to Always-Remember" Moments.  A song by Chris Tomlin came on the radio and Evie and I sang along at the top of our lungs

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

Friday, May 9, 2014

How Many Times Do I Have To Tell You? ~ Guest Blogging Day


John 6:35 ...I am the bread of life; whoever comes to me shall not hunger, and whoever believes in me shall never thirst.  NIV
John 6:41 ...I am the bread that came down from heaven. NIV
John 6:48  I am the bread of life.  NIV
John 6:51  I am the living bread that comes down from heaven.  If anyone eats of this bread, he will live forever.  And the bread that I will give for the life of the world is my flesh.  NIV
As a mom, I know what it's like to have to repeat myself.  Whether it's calling her to the dinner table, hurrying her to get dressed and ready for the bus, or asking her to turn the TV down; I have to repeat myself all the time with my daughter.  

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

Thursday, May 8, 2014

Wrestling with God ~ When Letting Go Would Hurt Less



Throwback Thursday!  I decided to share something that I wrote back in 2010 about blood draws and how we chose to wrestle with God...



Evie had a blood draw yesterday.  As much as she tries to be brave, I could see her face go pale when I picked her up from daycare early.  She said in her breathy, weak voice, "Are we going for a blood draw?"  

"Yes, Sweetie, we are." 
 "And we'll get ice cream after?"   
"Yes, we'll go to culvers."   
"And we'll take it home and watch Newsboys?"   
"Absolutley."

We get to the Mt. Horeb Clinic, and the real fear sets in.  She walks her way back to the room, and I feel as though I'm ushering my five year old down the plank to uncertain doom.


As the door closes she crosses her arms, clasps her hands around the inside of her elbows and screams, "No, No blood draw."  Her teeth are clenched, her eyes pinched shut, her body trembling with her effort to prevent the inevitable draw to occur. 
 

As the lab tech presses around feeling for a vein, the other nurse and I try to keep Evie still...I'm secretly wishing the tech could just jab the needle in and go for it.  Meanwhile, I'm trying to sooth Evie with a calm voice, singing, "I was walking outside it was a quarter to three and I heard my popcorn calling me..." (Laurie Berkner).  Evie's screaming too loud though...how can I soothe her if she can't even hear my voice?  However, I can't yell the song, it will loose all potential for creating a soothing sound. 

The tech says those dreaded words, "I can't feel anything in her arms.  You'll need to take her into Madison to Mineral Point Road."   

Ah, Mineral Point Road.  The Urgent Care.  We know it well. 
 

Reluctantly I pack up our things.  Evie, of course is believing that her 12th hour pardon has come in!!!  "All done, Mommy?  Go for ice cream?"   

Oh, Sweetie, we have so far to go...


Let's make lemon-aid with our lemons, I decide.  We make the 20 minute journey to Madison, all the while singing to our Newboys, raising our hands to the Lord and singing our praises.  We check in to the urgent care, and I say a silent prayer that all the masks the people are wearing in the waiting room can really protect us from whatever ailments they are suffering from.   

Evie and I wind our way back to the lab and sign in.
 

One of techs looks out at us, "Diane, before you go, can you help me with this one?"  The tall, slender blonde swiftly re-cloaks herself in her clean white lab coat.  We sit down and peal back the second set of band-aids with emla cream on them that Evie has worn for the past hour.  


Evie begins to cry again.  She's not wrestling as hard this time, but still is tensing her muscles and struggling for control of her arms, her self, her body. 
 

The tech had a little difficulty finding the vein, but not much, as I saw her pivoting the needle one, two, three times, I started praying to myself, "Oh, Lord, find it, find it, find it...."  

I started singing to Evie, "Here's my Devotion, all that I have, to give..." (Newsboys)...but she was still too loud, she couldn't hear me...it was no use.   

The techs were busy collecting the blood that had finally been tapped.  It made me consider how one might feverishly collect  oil as it finally pooled forth from a well. 

"Evie, if you stop struggling, this won't hurt so much..."


Wow...Let's think about this...how often do we do that with God?  How often do we push, and struggle and fight--and all he wants to do is calm us, and hold us, and comfort us?  How many times is He trying to sing us a love song, or trying to speak gently to us...and we just continue protesting and screaming and yelling?


Don't fight God...don't wrestle with him.  He loves you, he wants what's best for you.  Just be silent...sit still.  It might be uncomfortable while he works, but he's holding you...he's rocking you.  Don't force him to pin you in order to make His will be done, rather let him be victorious and show His glory through you. 


Jesus went to the Garden of Gethsemane to silently ask his Father not to lead him to the cross.  He cried out to him, "Take this cup from me, but not my will...yours."  He surrendered his will.  He let God hold him in that moment and gently rock him in that Garden.   

What a beautiful surrender it was...open armed, pouring out his love for us. 

Remember, in your next moment of testing, to remain still.  Listen to God move, listen to him sing.  I promise, it will hurt less if you choose NOT to wrestle. 

The faucet hasn't dripped in months...

Nori and Jinx at our hotel at Lifest Five months have passed, We've seen it snow, We opened gifts,  We miss you so. We t...