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Showing posts from April, 2014

In This World You Will Have Migraines ~ Guest Blogging Day

I have told you these things, so that in me you may have peace.In this world you will have trouble.But take heart! I have overcome the world.John 16:33 NIVIt’s tough being a parent.To be a parent with a chronic illness makes circumstances even harder.I have been dealing with debilitating migraine headaches.It’s something I have dealt with for 20 years; but they come in cycles, and when I’m in a cycle, I have them daily for a long period of time. 
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Audience of One ~ Guest Blogging Day

Indeed, I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord.  For his sake I have suffered the loss of all things and count them as rubbish, in order that I may gain Christ...Philippians 3:8
God often reminds me that the world is NOT my primary audience. I am not here to become popular, famous, or highly acclaimed.  I am here to carry out his will, whatever that may be.  He most recently is reminding me of this with my current condition; daily migraines. 

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When it's Raining Shoes-WAGR Wednesday

When you first hear that your child has WAGR Syndrome, life takes a turn.  How big of a turn, how fast of a turn; that all varies, but you know that life will never be the same, and you immediately feel set apart from many of your friends who have "healthy" kids. And, the thing with WAGR is that typically your DOCTORS won't even know what to tell you.  Some may try to tell you that it's a wait-and-see; but others will say, "let's stay on top of it all."  In our case, we had doctors who wanted to learn as much as they could, and who wanted to stay ahead of anything that might come our way.

Regardless of how great a support system you may have; doctors, therapists, friends, and family...having a child with a rare disease; a disease that doesn't have enough "numbers" to really get statistical data from, a disease that rarely is found in text books other than a paragraph or two about all the "stuff" that comes with it...having a child…

What Am I Asking of God? Guest Blogging Day

The lyrics for the song Oceans by Hillsong United really hit me this weekend and I thought about how often we ask questions like:  Just how much does God think I can handle?  Well, if we're asking him to take us deeper than our feet could wander...we better be ready for his response.
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A Bowl of Flowers

Packing memoriesPacking dreamsPacking fears I'd rather leave behindPacking my clothesPacking my waresPacking the dust I'd rather leave behindPacking the photosPacking the booksPacking the things I hoard here on earthThis bowl of flowers Once held my hopesBut they have been packedIn a box that's closedSealed tight with tapeMarked          "fragile"                        "don't break"Moth and rust won't gobble hopes upAlthough the flowers will wither and dieMy truest treasure is stored up on high.Written in response to Sunday Scribblings 2 Prompt ~ A Bowl Full of Flowers

Favorite Fridays~Our Journey through Oz with UW Hospitals, Clinics, andthe American Family Children's Hospital

Ironic, isn't it, that the place I wanted to flee from so desperately this past Tuesday is the place that I write about today as one of my favorite things that I'll miss about Madison when we move?  But it the Wizard of Oz, Dorothy wanted to get home from Oz too, but she made some amazing friends there, learned a lot about herself, and did some MAJOR growing up.

When our house first landed in Oz, it was because Evie was diagnosed with WAGR...and the first friend we made was Glinda and the Munchkins...all the doctors, nurses, and staff at our own little UW clinic here in town have been amazing.  Following up on ear infections, UTIs, and wanting to ensure that, not just Evie, was comfortable, but also Jeff and I.  We have been blessed with doctors who want to learn, and want to be a part of this journey of discovery with us.
So, they showed us the yellow brick road...a path toward satisfaction in this life...a path of hope, with a promise of a future.We met our "Eye T…

All Power Has Been Removed From You~Guest Blogging Day

"Is not this the great Babylon I have built as the royal residence, by my mighty power and for the glory of my majesty?"  Even as the words were on his lips, a voice came from heaven, "This is what is decreed for you, King Nebuchadnezzar:  Your royal authority has been taken from you."  Daniel 4:30-31 NIV "You are an amazing mom."

Those words DO encourage me; they lift me up on weeks like this one, when my daughter's had her Atrial Septal Defect repaired and we got to spend the night in the hospital. Reading the virtual cheers and supportive comments on Facebook gave me energy, and helped me get the boost I needed to power through the long night.  Read More OnComfort in the Midst of Chaos...

WAGR Wednesdays~Expect the Unexpected

As I sit here in my recliner, with coffee in my hand and cats on my lap..(well, the coffee isn't in my hand right now; that would make typing too difficult), it makes sense to me that I should write about the many times that I have been caught "off guard" regarding some of the difficulties of WAGR, or the resulting health conditions.  I've decided, however, to just write about the most recent...

Evie just had her atrial septal defect repaired (a hole in her heart that never fully closed).  While ASDs use to require open-heart surgery, they are now repaired with cardiac catheterization.  From the written description and verbal descriptions of the procedure that I received, I was expecting that Evie would have a 3 hour procedure during which a catheter would be used to access her heart through a vein in her leg.  She would be left sedated for most of the afternoon, as a four hour period would be required to allow the vein in her leg to seal back up.  The literature says…

Favorite Fridays~Our House

We moved in the week after returning from our honeymoon in Quebec City.  
I got tendonitis in my arm during the move,
I felt awkward and foreign in our new home.
But then we painted, 
And soon I learned that the faucets in the bathroom turned the wrong way.
We got two black kitties.
It became our home.

Swirling staircases,
Peeling paint on the porch,
A country kitchen,
With a window to the north.

A window; right next to my coffee pot, 
The first thing I see in the morning is:
Snow flying, 
Rain pouring,
Fog rolling,
The sun or moon glowing.

An office; still painted mint green today,
We thought we'd change it, but never did.
In that office I heard dad say that Grandma Ev was no longer with us;
And years later, my mom say that my dad was now gone too.

A living room; with the grape vine stencil border~my labor of love.
I also labored there for 17 hours before going to the hospital to have Evie.
There we rocked Evie when we brought her home,
Brought her home from specialist appointments,
From surgeries, 

Sovereign and Mighty and Unstoppable

As usual, I'm studying JUST the right book at JUST the right time.  The book of Daniel is a remarkable example of God's sovereignty and power.  It has helped me stay level and calm in the midst of moving across the country, buying and selling a house, and preparing for Evie to have her heart surgery.  

Why am I so calm?

The study that I'm doing on the book of Daniel has been taking me through, not just Daniel, but other parts of the Bible that speak of God's power and might over the entire realm of humankind.  This morning it took me to Isaiah 14:24, 27:
The LORD Almighty has sworn, "Surely, as I have planned, so it will be, and as I have purposed, so it will happen...For the LORD Almighty has purposed, and who can thwart him?  His hand is stretched out, and who can turn it back?"  I have nothing to fear, for God, the Almighty, is in control. 

It is NOT up to me to find our house; God already has our house chosen.  So, if we don't get the house we want, that&…

WAGR Wednesday~Incognito

They always look so cool; styling with their sunglasses.  But, the sunglasses that our kids wear are not for fun; they are not just a fashionable accessory.  Because our children with WAGR have aniridia (no irises in their eyes), they need sunglasses in order to alleviate their photo-sensitivity.   Sunglasses are not a choice; they are a necessity. 

Evie didn't always cooperate with wearing her sunglasses.  As a baby, we had even purchased a higher priced brand of sunglasses called Baby Banz.  While these sunglasses came highly recommended, Evie's ptosis (heavy, drooping eye lids) was only aggravated by the fact that the sunglasses would wrap around her head and press the eyelids down more.  She did NOT like wearing them.  I have heard that it's quite difficult to get infants to keep sunglasses on at all; so we started with hats.

Tight hats seemed to aggravate Evie as well.  She did not like the tightness of the tiny infant baseball caps that we bought.  I found that the wa…