Friday, January 30, 2015

The Importance of Being Fit ~ Guest Blogging Day

"Pilates Training" Courtesy of Marin/
Open my eyes, that I may behold wondrous things out of your law. 
Psalm 119:18 ESV

I could begin with a laundry list of the current fad diets.  I could begin with a diatribe of fitness regimens certain to contour and shape your body in under ninety days.  Or, I could just begin with a simple thought that I had the other day when some friends and I were discussing our difficulties with carving out time to dig into God's Word.
What's our damage?  (A.K.A. What's our problem.)
I manage to carve out time nearly EVERY day to do my workout.  Some days it's twenty minutes, and others it's forty.  I manage to do my volunteer work for the International WAGR Syndrome Association.  I even manage to carve out twenty-five minutes a night to watch How I Met Your Mother with my husband.  (I had never watched the show when it was on television, but now that it's on Netflix, I can watch it on MY time.)
So, why WOULDN'T I be able to carve out time for God?
Wait, let me re-phrase that...

Why DON'T I?

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

Wednesday, January 28, 2015

The Ticking Timebomb They Sent Home from the Hospital

I'm sure no one thought that when they stuffed the folders at the hospital to send home with new parents they were placing in those folders a time bomb.  


A free ninety days (or something like that) of a life insurance policy for your baby named after a popular baby food brand.


We took our folder and our baby home, having just learned that she had something wrong with her eyes called aniridia (lack of iris in the eye) and that she might have a rare disease called WAGR Syndrome.


WAGR...W~Wilms Tumor (Kidney Cancer), A~Aniridia (Possible Glaucoma, Cataracts, Blindness, and more...), G~Genitourinary Abnormalities, R~Range of Developmental Delays.


We were told by our doctor that babies normally eat, sleep, and poop.  If our little girl was doing that, we were just fine.  In the meantime, we were waiting for the results of her genetic testing to confirm or lay to rest the theory that our lives were about to change dramatically.


One day, I decided to go through the folder from the hospital.  My maternity leave was filled with fear; I was learning to be a mom for the first time, but at the same time, I was afraid that our baby wouldn't grow old enough to even wear an 18 month sized dress we had received as a gift.  I kept myself as busy as I could, and even filled out the flimsy leaflet that was the application for the life insurance plan with a perfect baby face on the front of it.
"List any health conditions the baby has..." it said...

"Aniridia and possibly WAGR Syndrome" I wrote...
Wasn't I naive?


A letter arrives in the mail with a perfect baby face on the front, and the perfect baby lips shaped so naturally I could almost hear the coo.
"We regret to inform you that your baby doesn't qualify..."
"This by no means is any indication that we don't believe your child will live a healthy life..."

...This is life with a rare disease...
...This is life when you feel you may be the only ones...
...This is life before we found the International WAGR Syndrome Association...
...And this is why I, from that day forward, refer to the "anonymous" company's insurance policy as the "Blankety-Blank Throw Up Plan"...

BTW, Blankety-Blank Company, she's 10 (and a HALF) now!

Telling Your Story

If you've never written about receiving a rare disease diagnosis for you or your child, now is a good time.  Rare Disease Day is just a month away, and you can share your story to a large audience and put rare disease on center stage for a day. 

  •   Start by identifying your theme.  Do you want to talk about receiving the rare disease diagnosis?  Handling appointments with doctors, therapists, etc?  How your friends and  family responds to a rare disease diagnosis?  Difficulty in accessing good medical care?
  • Draft a timeline.  This helps to get your thoughts in a chronological order and will help you recall details that you might otherwise forget to include.  The timeline could be your child’s life up until now, or could just be a specific timeframe like infancy, school years, Wilms Tumor treatment, etc …
  •   This is the step I call:  Throw-up on the paper or the screen”.  In other words, just start typing or writing now that you have laid out a timeline of the events surrounding your theme.  It’s much easier to “tweak” your writing once you have something written out.
  • Read through what you’ve written.  Have you made it personal by writing “I” and “we”?  You want to when you are sharing your story.  Have you used all your senses to describe events you wrote about?  Sights, sounds, smells, and the feelings they generated within you.  Have you identified who, what, where, when, why and how?  Be sure to keep privacy for doctors and others by either saying Dr. S or using alias names if you haven’t asked their permission to write about them.
  • Have another person read and make grammatical corrections and other suggestions for helping to expand or condense your story.
  • Make sure the first paragraph and the last paragraph engage the emotions of the reader, and also point to the theme of your story. 
  •   Ex.  Our daughter’s rare disease diagnosis came on the third day of her life.  We had all of our dreams and securities ripped from our hearts.  Suddenly our lives; rather than filled with plans of visiting friends and family to show off our newborn, became filled with doctors appointments, therapist visits, and a scramble to obtain additional insurance to cover our new medical costs.
  •   Ex.  While we are 10 years into our journey, we still wrestle with fears of the unknown future for our daughter and her rare disease.  We rely on researchers and lawmakers to take notice of the rare disease community to grant us more security here on earth and to help point us toward and brighter tomorrow.
  • Share your story!!!  There are a number of ways to do it, but first visit and click on the “write your story” icon…you can copy and paste your story and share it with the world.  Post your story on Facebook in your Notes section.  Send your story to your state and national leaders-e-mailing them is easy off of your government’s website.  Be sure you use #raredisease #rarediseaseday and #NORD if you are sharing your story on social media.

Saturday, January 24, 2015

Her World, My Mystery

What is it like to live there?
Lying down and staring up,
Watching Full House or singing with K-Love, 
Rocking back and forth, 
Creating a rat's nest to brush out later with tears.

What is it like to live there?
Knowing enough, but not knowing enough,

Knowing you're different, not just unique; 
But very, very different from your friends.
Knowing that your health has never been good, 
And that this will never change.

What is it like to live there?
Trapped behind eyes that don't hide the light,
In a mind that struggles to find her senses;
The senses to make sense of it all,
In a body that struggles to run, jump, and play,
With a mouth that can't say for sure how you feel.

I want to know what it's like to live there, 
In your own world, in your own struggles, in your own thoughts.  
It is a mystery to me...a painful mystery I try to solve,
Taking one clue at a time, as they come, 
And piecing them together to be a better mother for you every day.

Written in response to Sunday Scribblings 2 Prompt:  lost in her own thoughts

Friday, January 23, 2015

The Ultimate Ambulance Chaser ~ Guest Blogging Day

Photo Courtesy of Nitinut/

Don’t overlook the obvious here, friends. With God, one day is as good as a thousand years, a thousand years as a day. God isn’t late with his promise as some measure lateness. He is restraining himself on account of you, holding back the End because he doesn’t want anyone lost. He’s giving everyone space and time to change.  2 Peter 3:9 MSG

Lawyers are often irreverently referred to as "ambulance chasers;" as though they go chasing down people who may have a reason to hire a lawyer and seek some sort of justice for whatever put them in the ambulance to begin with.  

But I think the true Ambulance Chaser; the Ultimate Ambulance, Chaser is God. 

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

Saturday, January 17, 2015

The Hot Mom~Guest Blogging Day

Photo "Flames" Courtesy of Arztsamui/
I know your works: you are neither cold nor hot. Would that you were either cold or hot! So, because you are lukewarm, and neither hot nor cold, I will spit you out of my mouth. 
Revelations 3:15-16 ESV

I want to be the hot mom...

No, I don't mean "the attractive mom".  Nor do a I mean "the fit mom."  I mean, I want to be a hot mom, just like I want to be a hot Christian.  

I want to be radical, uncomfortable, hated, loved, convicted, elevated, rich, and poor
Revelations tells us that God does not love the lukewarm...the ones who accept Him and his Son when it's comfortable and trendy; the ones who acknowledges God, but don't pursue God, the ones who want God's presence when they feel alone and afraid, but who would rather He not show up when they are in a comfortable "worldly" place. 
I think the same can be said for parenting.
We see a lot of lukewarm parenting these days.

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

Friday, January 9, 2015

Did I Mess Up When I Left the Party? ~ Guest Blogging Day

Photo Courtesy of Imagery Majestic/
He who walks with wise men will be wise,
But the companion of fools will suffer harm.  
Proverbs 13:20 NASB

Just a couple of days ago, my friend Barb wrote about the "pity party" and about our responsibility as Christians to lift one another up and not to abandon those who need us the most.

Boy, did that ever strike a chord with me.

I couldn't stop thinking about, nor talking about her post!  I recognized that, while I have at times thrown my own pity-parties, I have also been the one guilty of "avoiding" certain places or people when I just didn't feel like "lifting them up" again.

I really started to feel convicted by the Holy Spirit to evaluate a variety of situations I have been in, and whether I left them against God's will, or whether I had left them in accordance with God's will.

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


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