Thursday, August 28, 2014

Quit Yur Belly Achin'~Guest Blogging Day

Photo Courtesy of PinkBlue/
Let every person be loyally subject to the governing (civil) authorities. For there is no authority except from God [by His permission, His sanction], and those that exist do so by God’s appointment.  Romans 13:1 AMP
I wonder if God is trying to tell me something?

He seems to be continually reminding me lately NOT to complain, but to honor and respect those in authority.
Being the parent of a child with a rare disease, it becomes difficult to stay humble and submissive when I have to be the "expert" on my kid.  Many times, the doctors, therapists and teachers WILL look to me for some ideas, information, and suggestions; but not always.  How I handle myself with our leaders, those in authority over our different areas of care, is critical to how I reveal God to the world.   

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

Wednesday, August 27, 2014

First Ever #WAGRzebrachallenge Final Results


First of all, I apologize for not posting earlier today...were you all waiting with bated breath???

Here are the results of the first ever #WAGRzebrachallenge:

Total Facebook photos posted:  (by my human investigation and findings) 112

Total Tweets:  3

IWSA Facebook Page:  +150 % in New Page Likes for the Week
                                      +287% in Total People Reached (the number of people who see our things in their news feeds)
                                      +181% in Total People Engaged (people liking, sharing and commenting on our page)

Total $ in On-Line Donations to the IWSA over the past week:  $465

Total # of Views of my #WAGRzebrachallenge Blog Posts: 1,040


I can't begin to tell you, from this mommy's heart, what it feels like to see this kind of support, love, encouragement and enthusiasm for our kids.  Everyone who participated in any capacity gives us the strength and courage that it sometimes takes to be the parent of a zebra.  

As I mentioned, that was an un-planned challenge...I hope, seeing the success of this, to put together a much stronger campaign to celebrate Rare Disease Day 2015 with all of our families around the world.  

Keep checking in on Wednesdays for my (usually weekly) WAGR Wednesday posts that highlight just one of the many nuances that we find with WAGR Syndrome, and watch for our monthly newsletter which is published around the 5th of each month and posted to our IWSA Facebook Page...or, you CAN sign up to get it sent straight to your inbox by clicking HERE!

The thing that this challenge has shown me is just how strong the friends and families of our WAGR families are!  I found a quotation that sums up how rewarding this challenge has been for me:
"The greatest good you can do for another is not just share your riches, but to reveal to him, his own."  -Benjamin Disraeli
Thank you for showing me just how richly I am blessed...

Tuesday, August 26, 2014

The Foothills

On the front pages
We read about the lives of others, 
The headlines draw us in,
But never share the volume of their days,
The vastness of their reach.

On the front pages
We realize that we know nothing about their fears;
The fears that stretch beyond the foothills,
And while we fight to reach the mountain,
We get swallowed at its base with fallen rock and sifted sand.

On the front pages
We read about victory one day
And terror the next.
How do we ascend from these foothills?
How do we reach the summit?
How can we climb when we feel shaken inside?

On the front pages
We deny our own demons while pointing at theirs,
Without a thought that our demons
Will ever break loose.
And still the demons run rampant here in the foothills.

On the front pages
We don't read of the Mountain;
We deny it exists and only look here on earth.
We look for answers in the foothills, 
But answers live on peak.
And that's why we have pain.
And that's why we have death.
We try to make sense of life in the foothills,
Yet  were created for life on the Mountain.

Climb, and don't look back.
Climb, and do not fear.
Climb, and know there's a perfect life on the Mountain;
Where you'll look down on the foothills, 
And see Truth through the eyes of God.

Written in response to Sunday Scribblings Writing Prompt:  From the Front Pages 

Giddy Up~You've Found a Zebra

Tammie, why is it called the #WAGRzebrachallenge ?

Last Wednesday, I wrote from my heart about how I felt regarding the #ALSicebucketchallenge and challenged my zebra lovers around the world to take on a challenge to promote awareness of WAGR/11p Deletion Syndrome.

I must say, I'm thrilled with the results, as are many of our WAGR families.  I received e-mails from families that have brought tears to my eyes.  This has served as an amazing way for our families to FEEL the love and support of their friends and loved ones just by posting a picture and taking the challenge to share.  

Many families have asked me though, why zebras?

Have you ever noticed how, when you "know" the language, you don't even realize what parts of a language might be "slang" and unknown to others around you?  I didn't even think about the fact that not EVERYONE knows why we call our loved ones with WAGR zebras!

Here's where it stems's actually a term frequently used in the rare disease community...

In the late 1940s, a professor at the University of Maryland School of Medicine coined an unusual phrase to describe unexpected diagnoses. “When you hear hoofbeats behind you, don’t expect to see a zebra,” he said. The phrase stuck and today, medics commonly use the term “zebra” to describe a rare disease, usually defined as one that occurs in less than 1 in 2000 of the population. (accessed on the web at MIT Technology Review on 8/26/2014)

So, when our kids have a raging stomach ache, and are in excruciating pain...a doctor might think "food poisoning" or "stomach flu"... but people with WAGR are at risk for developing, you might have to look for the zebra and not the horse.

When Evie gets a bug bite, and I get a little anxious and people think, "It's JUST a bug bite..." I can say, "Yes, well...those have turned into staph infections and cellulitis more than once in her life..."  I have to watch that bite and even draw a circle around it to make sure it doesn't grow too much bigger or we will be on our way to the doctor.  I'm looking at a zebra...not a horse.

So, tomorrow is the day that I'll write about how our little week long #WAGRzebrachallenge turned out.  I didn't have plans to do this, but I am loving the results.  Seeing that Rare Disease Day 2015 is just a few months away, I think I'll get my mind twirling and see how we can do this again in a well planned and executed manner.  

But for now, keep those posts coming on Facebook and Twitter#WAGRzebrachallenge ... call out your friends to take a picture wearing zebra print, with a zebra at a zoo, or just even a picture with one of our favorite zebras with WAGR.  

We love to feel all the support!

Thursday, August 21, 2014

Congratulations, Loser! ~ Guest Blogging Day

Image Courtesy of ImageryMajestic/
Have confidence in your leaders and submit to authority, because they keep watch over you as those who must give an account.  Do this so that their work will be a joy, not a burden, for that would be of no benefit to you.  Hebrews 13:17 NIV

How many of us have been passed over for a promotion, or an elected position, or a job?  How many of us believe that someone bad mouthed us, or told a lie about us, or is spreading false rumors about us; and it seems like the “people in authority” believe THOSE people rather than us?  How many of us KNOW that we work smarter and harder than other people who make more money and gain more glory than we do?  How many of us just want to crawl under the covers of the bed, or call in sick to work, or lock ourselves in a closet?

I have good news and bad news.  If this were an interactive blog, I’d ask which you want first.  Since it’s not, I’ll start with the bad news and then really raise your spirits with the good news.

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

Wednesday, August 20, 2014

#WAGRzebrachallenge ~ WAGR Wednesday

Some people are annoyed by it…some people wonder if it’s really doing any good…and others, like me, marvel at the brilliance of a simple call to action and how it’s taken the world by storm.  What is it?

The #ALSicebucketchallenge.

If you haven’t heard of it, then you may need to check and see if you’ve accidentally taken up residence under a rock.  (Or, you may not have internet access, which could significantly hinder your exposure to this media blitz.  I do not judge you; on some days, I actually envy you.)

Here’s the premise…in very general, short form:

You challenge a number of your friends (by tagging them on Twitter or Facebook) to follow your example, and someone records a video of you either dumping a bucket of ice water on yourself, or you having someone else dump a bucket of ice water on you. 

When you challenge your friends, some have been mentioning that you should donate $10 or so to the ALS research; others have been noting that if you don’t accept the challenge you should donate $100 to the ALS research.  According to several sources, there are a number of groups who have benefited from this awareness movement, including, but not limited to:

Do you know how awesome the ice-bucket challenge is?  

I’m not talking about the money.  I’m not talking about the entertaining value of seeing hundreds of thousands of different spins that people are putting on their videos to make it fun to watch.

I’m talking about awareness.
I’m talking about knowledge.
I’m talking about making ALS important in the research community, and making it better known.

But what I’m really talking about is WAGR Syndrome.

In science, in research, the big question is often “probability”.  Probability is how likely something is to happen.

There is no real known probability for the incidence of WAGR syndrome.  Why?  Because it is THAT rare; because we are talking about only a few hundred documented cases in the ENTIRE WORLD.

So, we know that 50% of the people who have WAGR will get Wilms Tumor.  Okay…that stinks.  Cancer sucks, we all know that.  But, translate that to your OWN personal family.  If 50% of your family got cancer, how would you feel?

Now, let’s look at recurrence of Wilms Tumor.   That’s a very LOW incidence.  We’re talking 1.5% to 3% (with one tumor on one kidney and another later developing on the other kidney) according to an article abstract I found on-line  This research doesn’t appear to include specifically those who are genetically pre-disposed to Wilms Tumor though, like those with WAGR syndrome.
But let’s play with that number!  Let’s do some math with  3%.  

Three percent means, if we have 100 people with WAGR syndrome, and 50 of them develop Wilms Tumor (which is statistically supported), then we say 3% will have recurrence, that is 1.5 patients.  Between 1 and 2 of our WAGR families would have a recurrence.  If we know 200 families with a patient with WAGR, then 100 of them will receive a Wilms Tumor diagnosis, and 3 of them will have a recurrence.

Mind you, those are low-ball numbers, because we know that people with Wilms Tumor are pre-disposed to Wilms so they will be pre-disposed to recurrence.

What does this have to do with the ice-bucket challenge? 

We need to raise awareness of WAGR syndrome around the world. 
We need to find more families with WAGR in order to gather the data we need so we can produce the statistically significant numbers that make doctors take notice.

Doctors won’t typically recommend 3-6 months kidney screenings after age 8 for a risk percentage of 3%.

Doctors MAY make a recommendation of 3-6 months kidney screenings after age 8 if there’s a 20% recurrence.

My daughter is at the age where the typical recommendation from Wilms Tumor protocol would say to screen the patient just one time each year.  But in WAGR syndrome we know Wilms has been found at 12 year and up to as late as 25 years old.

When doctors say, “The odds are small that she’d develop a recurrence now at this late age…” I want to say, “Oh, and were the odds small that I would have a child with WAGR syndrome?” 
Microscopic odds.
Don’t talk to me about odds.
I’m a mom who has a child who defies odds.
So, the fact is, I would be OVER THE MOON if I saw a bunch of people hash-tagging #WAGR something or another.  Would it be great to see a bunch of donations to the International WAGR Syndrome Association?  Sure!  Here’s the link:
But that’s not my motivation.
I’m sending out a call to action to raise awareness of WAGR syndrome through the #WAGRzebrachallenge.  Simply post a picture of yourself with either:
  • A person with WAGR syndrome
  • A live zebra
  • A stuffed zebra
  • A person dressed as a zebra
On whichever social media networks you prefer!   
Don’t forget to use the hashtag #WAGRzebrachallenge, AND most importantly, don’t forget to challenge your friends and family to do the same.   

You could something as simple as:
I’m showing my support for people with WAGR/11p deletion Syndrome by posting a picture of myself with a zebra!  I challenge ________ to do the same in the next 24 hours!  #WAGRzebrachallenge to learn more!
I want to see how many posts we can get over the next week.  Next Wednesday, I’ll report back to you on how effective this challenge was.  
What are the odds that I can find 300 posts with the hash tag #WAGRzebrachallenge?
 What are the odds that YOU will do this and make a difference?
My guess…the odds are in our favor…

Thursday, August 14, 2014

The Source of Our Joy~Guest Blogging Day

Image Courtesy of Evgeni Dinev/
You always show me the path that leads to life.
 You will fill me with joy when I am with you. 
Acts 2:28 NIRV

New school pencils, new markers, new crayons.  New teachers, new schedules, and maybe new shoes. 
Sounds great, doesn't it?
But then there's also:  new worries, new challenges, new fears of new unknowns.
New locker combinations.
A new flu strain so we have to get a new shot.

A fresh start, like the one my family and I have experienced in moving to Nevada, can be exciting and invigorating.  But I look at my daughter and realize that the newness of it all isn't quite as pleasant for her.  The start of a new school year for any child can be overwhelming and stressful with all the changes and new things to which one must become accustomed.  So, tack on to that stress the fact that my daughter has nothing old and familiar (except maybe us), and I think, "Oh my does one process it all?"

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

Wednesday, August 13, 2014

Our Mess is the Best~WAGR Wednesdays

As I sit in our new home...well, we've been here for about 2 months now...I look around and am so pleased to be in a cleaner, less cluttered environment.  But it's not easy to do.  Not with a child with WAGR syndrome.  I'm sure my fellow moms and dads can support me when I say that many of our kids can create the best mess around.

It seems reasonable to say that having a child with a vision impairment would lead to more messes...spills, dumps, difficulty in picking this up that have been left around.  But, I actually think it's Evie's sensory issues that create the worst mess of all.  From what I've observed, throwing books, scattering dolls, flinging doctor kits and projecting plastic food and kitchen utensils is an unchallengeable talent of Evie's.  

I can clean her room up every day, but later that same day the books are all out of the book shelf and every toy has been removed from the clear plastic toy box.  (I note that it's clear because I once answered the theory of a therapist that Evie may throw all her toys out because she needed them to be visible.  "Get a clear plastic toy box and I bet that behavior will cease."  No.)

Evie also LOVES to rip up and crumple paper!  Oh joy!  I just finally had to dig out her construction paper because there was an epidemic of tearing and crumpling my good card stock.  At least the construction paper is less Christmas present idea, everyone!!!

I had heard the suggestion of saving catalogs and phone books to enable Evie to tear those pages.  I did that for a little while, but found that she still would find a simple notebook or, worse yet, her OWN books to tear pages out of.  (I have become quite the book-repair genius, I might add.)

The great thing about our big move is that it gave me a chance to purge a lot of the "flingables" that aren't really played with.  As a matter of fact, I just got her "toy box" put in a closet had been stacked under boxes and was still taped closed by the moving company.  Yes, two months here, and she had never once gone looking for those toys.  

I can tell you that Evie, and possibly Jeff as well, are not too thrilled with my innate desire to keep our new house "clean."  Although, I have found that helping me with things like vacuuming and swiffering floors seem to be favorite activities for Evie.  But, I will typically become quite stressed at the end of the day when I survey the floors in the each room and see scraps of paper, books on the floor, clothes spilling out of closets and the rest of the "art" that Evie has created during the day.  

It's a balancing act.  Do I fry myself each day trying to clean up behind Hurricane Hefty?  Or, do I take a deep breath, tell myself that we'll do the same thing tomorrow and not to waste my time that could be spent doing other thing?  

I roll the dice and let fate decide...

Thursday, August 7, 2014

The Interview~Am I Qualified? Guest Blogging Day

Image Courtesy of Marcolm/
Jesus answered, “I am the way and the truth and the life. No one comes to the Father except through me."  John 14:6 NIV

I sit anxiously in the waiting room...the administrative assistant is clicking away on her keyboard, and the phone seems to be ringing non-stop.  I feel the sweat pools forming under my knees creating an inability for me to sit comfortably on the pristine couch in the corner of the room.

The door to his office swings open.

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


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