Wednesday, July 21, 2010


So yeah, the neighbors church burned last week. It wasn't a total loss, as the old part of the church was the part that burnt. However, when I drove past there was water running out the foyer doors...NOT really a good sign, but running past this week the congregation was out in force armed with hard hats, shovels, gloves, and unity.
It's been awhile since my last post... sorry... This week has been extremely busy with about 10 different studies that we're attempting to follow up on.
That aside, here are a few other "happenings" from the last week.
The lilies are blooming

My families keep feeding me cookies

And I got to go shopping saturday with my "sisters" for the summer:)

Cheesy self portraits with cute babies

Penned up babies

Manly discussions about machinery, etc...

Laughter with women...

Fat, happy babies

Cousinly love

Sand and little boys

Robin Hood sword fights with aunts


and another one because she is just that cute

uncles full of great wisdom

aunts that will pick you up

Mommies that love and are involved

Daddies that protect
It was a lovely weekend, followed by a week that has been busier than any other before. The first interviews for Brittle Hair Syndrome are finished, and the blood test reports are slowly trickling into the office. This means MORE paperwork!! We are also starting on expanding the Hypertrophic Cardiomyopathy study, and let me tell you, we're up to 35+ families already. It's HUGE (actually turning into quite a monster) but all good as it's been very interesting so far. According to the doctors, they think they are on to finding another form of the gene that causes HCM when mutated. It's exciting for them and for the families, as long awaited answers are slowly trickling in. That's the "love-hate" part of this job. A lot of our families have lost sons, daughters, siblings, grandchildren to a genetic condition, and when the answer as to "why" finally comes, there is closure. And as a semi-scientist, it's extremely fascinating to be right here and watch it all play out. However, the more I get to know and work/live with these families, the more "why this one Lord??" comes up. It's a real dilemma at times, but we're all still learning how to live, laugh, cry and love together. This is not a road that has ever been traveled, no "system" for recognizing and treating these diseases is set in place; and as one of the "dawdy's" told me... "There's no path to follow here so get out your machete and start hacking!"
Happy Rest of the Week to you all!!

Saturday, July 10, 2010

I had no intention....

...of completely falling in love with this place, these people, and My God all over again...
...but I have...

Friday, July 2, 2010

I finally found them...

...have a BLESSED weekend...

Thursday, July 1, 2010


Monday was looking quite dreary
...and no amount of coffee and glazed muffins was going to help...
Until I called these lovely people and they loaded up their car with a few earthly possessions, mobility aids, a tank full of gas and a HUGE sense of adventure!
Here's to U. Daniel & A. Thelma!

Best Sweet Potato Fries in town!

Inside "Boyd's" aka the locals
"hang-out and drink too much coffee and shoot the breeze when it's raining"
place to be
Wednesday morning started out gorgeous! And so off we went to the Behalt; Amish and Mennonite Heritage Center with a Mural painted by Heinz Gaugel. It's a story of the history of the Amish and Mennonite churches beginning and ending with Christ. If you ever get a chance to see it, do. It's worth it!

Stucco impression by Heinz Gaugel showing the early settlers from Swiss background
(The humans in front are real, not stucco:)

Zink's Fabric Outlet
ladies: they had some of that really nice "Amish fabric shop" type of fabric for
drumroll please... $2.99 A YARD!!!

U. Daniel telling stories
"...I can remember when I was young..."





role model of a cheerful, giving heart

the LORD is my help and guide

"green therapy"

it's like a patchwork quilt

So far this week I have learned...
You learn a lot more by just sitting and listening, rather than talking and trying to "guide" the conversation where you think it should go.
It's okay to not be perfect, and it's okay for your family to not be perfect. Rather, sit back and relish in the imperfections and appreciate each other for who they are instead of who you think they should become.
Working with three Doctors can be hair-raising; just don't forget who's in charge...
(they are.. ALWAYS!!).
Working with families can get "sticky" but it's in the "sticky" that you get a glimpse of who they really are every other day.
It's okay to cry with your "patients".
It's okay to take a day off, and let it be known that you are taking a day off.
How to "chill out" (kind of; still not a complete success story for that one).
How to just stand there and breathe.
It's very scary when small babies have open heart surgery.
How to ask myself the same questions that I am asking everyone else in my interviews.
How to mow the lawn diagnonally and not in a "wave"pattern (sorry Ray).
That putting on bandaids by oneself with one hand bleeding and the other trying to operate a two-hand operation is quite hard... this goes to prove that we humans can't survive alone and we are VERY dependent creatures.
How to cook pancakes in a small skillet.
Fresh Blueberries are one of God's FINEST creations:)
We're all together in this, and whether we admit it or not, WE NEED EACH OTHER!
Love does not go unnoticed, neither do prayers.