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Showing posts from February, 2014

Favorite Fridays~Mt. Horeb, Relay for Life

The last weekend in July in Mt. Horeb is one of the best weekends of the year...It's Relay for Life, a fundraiser benefiting the American Cancer Society.
Once Evie became a cancer survivor, I knew that we would participate in order to give back to this amazing community what they gave to us during Evie's battle with cancer.  Mt. Horeb, as a small town, gave our family love, support, and a light in the darkness. A fundraising walk, which includes walking through the night, the Mt. Horeb Relay for Life continues to be one of the most successful, per capita, in the nation.  
I'm honored to have served on a the committee a few years back, and our family team, Evie's Green and Speckled Frogs, raised well over $30,000 in 6 years of participation.Relay was always exhausting and always rewarding.  Each year, as we would take down our tents, and pack up our campsites, I would think, "I'm not going to do this again; it's just too hard."  But, after I would catch …

WAGR Wednesday~Why Care that We are Rare?

Guest Blogging Day~

It's another day of guest writing for Comfort in the Midst of Chaos.  Please visit there to read my piece titled Take Rest in the Cave, as well as the contributions of the other talented writers with whom I'm blessed to write.  Tomorrow, right here, it is WAGR Wednesday...I'm going to write about Rare Disease Day 2014, and why it's important to recognize and celebrate the day on behalf of all our families with WAGR/11p Deletion Syndrome and other rare diseases around the world.

Words from a Lunatic who Believes

Favorite Fridays~"It's a Great Day for Hockey" (Badger Bob Johnson)

Tomorrow afternoon, at 4 o'clock, we'll see the puck drop at a Badger Hockey game for the last least the last time holding our season tickets.  No doubt about it, one of the things I will miss the most about living in Wisconsin will be Badger Hockey.  I had never been to a hockey game until I started dating Jeff.  We both lived in Milwaukee; I was a graduate student, and he was a producer for the weekday morning news.

Hockey was in Jeff's blood...for as long as he can remember, he and his brother would each get a night~if I recall correctly, I think Mike had Friday nights with Dad and Jeff got to go on Saturday nights.  Jeff and Mike grew up playing hockey, being driven to Madison in the wee small hours of the morning since there wasn't a team in Mt. Horeb.  The basement of the house in which Jeff grew up was nearly floor to ceiling Badger; and the majority was Badger Hockey.

I fell in love with the game the minute I stepped into the Kohl Center for the first t…

WAGR Wednesday~Four Pics, One Word

Have you ever played the game Four Pics, One Word on your smart phone or device?  It's pretty addicting and quite the mind-bender.  The object of the game is to find the one word that each of the four pictures has in common.
As a response to Rick Guidotti's Positive Exposure project, I thought I'd do my own version and  incorporate a little bit of Four Pics, One Word...You see, whenever you start searching "WAGR" or "11pDeletion" on the internet, you get bombarded with medical literature, and that medical literature does NOT paint a pretty picture of WAGR, (neither do the medical photographs.)  
That's why I love Facebook so much; I can bombard MY page with the beauty of Evie; of her smile, of her dimples, or her glowing joy.  THAT'S what WAGR Syndrome is 95% of the time.  So, here's what I'd like to do.  I'd like to challenge those out there, who are up to the task, to put together their OWN Four Pics, One Word~WAGR collage.  I'm …

Reflecting on Some Deep Dark Nights