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Showing posts from May, 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…

Pebble In Her Shoe

Brings discomfort,
Brings fear,
Brings a hunger for simplicity.
A thorn in her side,
A pebble in her shoe,
A pea under her mattress.
Reveals strength,
Discovers courage,
Unearths the unsung hero within.

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

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

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.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 fel…

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

“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 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...

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 signifie…

Going Gorilla~WAGR Wednesday

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 5/7/14). Because…

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...

2 Good 2 Be 4 Gotten ~ Favorite Fridays

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 can you?
This past month and a half we got c…

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...

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.  NIVAs 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...

Wrestling with God ~ When Letting Go Would Hurt Less