Monday, September 29, 2014

The Struggle

Photo Courtesy of Me; Setting Courtesy of God
I was out for a walk the other night and saw my mind, it was the perfect "picture" of life here on earth. 

The struggle...

The fight to become strong, and independent.
The knowledge that we cannot stand alone.
The feeling that we are pulled in all directions.

In my soul's pasture, I find peace in the security that God gives me...He holds me up and braces me against the harsh conditions in this world.  He lends support and never leaves me without the watchful care and protection of legions of angels.
Gravity pulls me down and winds bend me in all directions; but the tension, the painful training of God's love strengthens me and sets me into a right relationship with Him.

This struggle, in the end, will shine bright as the glory of the beginning...  

Written in response to Sunday Scribblings 2 writing prompt:  in the soul's pasture

Thursday, September 25, 2014

Why Was I Even BORN? ~ Guest Blogging Day

Photo Courtesy of David Castillo Dominici/
Cursed be the day
    on which I was born!
The day when my mother bore me,
    let it not be blessed!
Cursed be the man
    who brought the news to my father, saying,
“A child is born to you, a son,”
    making him very glad. 
 Let that man be like the cities
    that the Lord overthrew without pity;
let him hear a cry in the morning
    and an alarm at noon,
because he did not kill me in the womb;
    so my mother would have been my grave,
    and her womb forever great.
Why did I come forth from the womb
    to see toil and sorrow,
    and spend my days in shame?
Jeremiah 20:14-18 NRSV
Have you ever had days like Jeremiah and felt that way?  Have you ever wished you could just crawl right back into bed and cease to exist because you were weary and heavily burdened with all you had going on in your life?  Have you ever had someone say to you, "Come on, cheer up and be thankful for all that God has given you?"  
I know I have~and this past Sunday, when I was at church and listening to Chris Brown speak on prayer, and how God wants us to pray, the Holy Spirit put this message that I'm about to write on my heart.
Continue reading on Comfort in the Midst of Chaos...

Wednesday, September 17, 2014

Hallelujah! I'm Cured!~Guest Blogging Day

Photo courtesy of vongvanvi/
As for you, brothers, do not grow weary in doing good.1 Thessalonians 3:13 ESV

As a parent of a child with special medical needs, I have seen medicine work and I have seen medicine NOT work.  As a human being, I have felt medicine work in me, and I have felt medicine NOT work.  But, have you ever been in the situation where you stop taking the medicine, or you stop giving the medicine, because you think the illness is gone?  I know that I have.

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

Thursday, September 4, 2014

Like a Corroded Flashlight~Guest Blogging Day

Photo Courtesy of Gualberto 107/
I will meditate on your precepts

    and fix my eyes on your ways. Psalm 119:15 ESV

The wind is kicking up, the TV stations are all airing radar of the storms moving through the area.  Sirens are blaring, plants and chairs outside are blowing over, and cats are scurrying under the beds.  I grab a bag and start dumping books, snacks, and blankets into it, strap the baby in the car seat and head downstairs.  Tornado season in Wisconsin...always an adventure.
We get downstairs and I turn on the radio.  Boom.  Power is out.  I grab the flashlight from the cupboard above the washing machine.  Flip the switch.  A low glow is emitted momentarily, but slowly fades. my best Minnesota-girl drawl I say in a whisper, "Ah, crap."
Continue Reading on Comfort in the Midst of Chaos...

Wednesday, September 3, 2014

A Good Challenge that Doesn't End~WAGR Wednesday

Believe it or not, I've found a "challenge" that comes with WAGR that I actually ENJOY


I thought it would be "neat" to run a challenge for a "week" that would create a little excitement on Facebook to see how many people we could have posting pictures of themselves with zebras, or with people with WAGR, or dressed up as zebras...just a little something fun which doesn't involve pouring ice water over ones head.

"Neat" doesn't begin to describe it...and apparently "a week" isn't long enough to do it.

And, apparently, when the Brits and the Aussies get going, they JUST.DON'T.STOP

I'm not kidding you!  So, in the first week we had about 112 Facebook posts!  Cool.  My blog had seen a great boost in readership, and it was all about WAGR, so that's an EXCELLENT sign that we are raising awareness.  Yay!

Then I was out for the day, but saw a message from a friend in England who said, "I think you quit too soon."  Hmmm...well, when I logged in to Facebook and saw all the new tags I had in people's photos, I knew what she meant.  There was a huge response to her #WAGRzebrachallenge.  I was being tagged in photos around the world!!!  LITERALLY!

Then, there are the Aussies.  Oh my goodness...a small and mighty group Down Under.  They were just WAITING to explode with black and white stripes.  There has been a 30% increase in #WAGRzebrachallenge posts since the Aussies joined us in this endeavor. 

So, since August 20th, there have been posts from Japan, Australia, England, Scotland, Dubai, Jumairah, Greece, Turkey, Bulgaria, Hong Kong, Canada...AND MORE! We have also had pictures posted from (as near as I can track) about 28 of the 50 United States. 

The Facebook page for the International WAGR Syndrome Association has had 26 new "likes"...having started the challenge with 304, that's a pretty significant increase!

My personal blog, the one you're reading right now, usually has about 1,000 views on a busy month; but in the past month has had over 2,500 views

Truly, this has been an amazing outpouring of support.  I'll be turning this all over in my head to plan how we can recognize Rare Disease Day 2015 by doing a similar challenge (and I'll be sure not to take any teaching jobs during that time so I can sit captive to my laptop and mark down all the BILLIONS of posts.)  I'll be excited to share this story with the people I meet in November when I attend the regional conference for NORD, the National Organization of Rare Diseases!

If you aren't familiar with Rare Disease Day (RDD), you can read my post from RDD 2014 "Why Care that We're Rare?" It's always easy to remember WHEN Rare Disease Day happens because it's ALWAYS the last day of Februrary...since February is a rare month with 28 or 29 days, that makes it the logical choice!  Mark your calendars NOW!

Thank you, again, for the response to the #WAGRzebrachallenge, and for continuing to learn more about, and spread more awareness of, WAGR/11p Deletion Syndrome.  Our families are forever grateful for your love and support.


Biggest Little City in the World,      Blackjack dealers, Wild Horse wranglers,      A thoroughfare to Burning Man and Nation's A...