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A Lesson in Brave
To My Girl, This week we wait. Again. We wait to see how nasty Cowden’s wants to play, and in what ways you’ll need to show it who is the boss. Again. You have every right to be frustrated. To be...
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(Breaking the) Code of Silence
The song by Billy Joel… “Code Of Silence” Everybody’s got a million questions Everybody wants to know the score What you went through It’s something you Should be over now Everybody wants to hear the...
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Dear Stress, Let’s Break Up…
Because truly I’m getting bored of you. I’d like try to spend some time with Serenity, or Sanity, or Relaxation, or maybe Peace. I know I’m bad at ending relationships. I get attached even to things...
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I Found the Christmas Spirit, at the Grocery Store
She could have ignored the tears in my eyes. She could have beeen annoyed by my lack of focus. Undoubtedly she was tired. It was Friday night, and after 8. I would never see her again. It would have...
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The Patient or The Person?
I am sure I am not the only one, especially the only parent, who struggles daily with wondering if I have made the best choices for my daughter. Sometimes we argue, and bicker, and I find myself...
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Overwhelmed
Someone tried to steal my credit card today. Online purchase of almost $1000. We are pros at this. Text alert. Call to Chase. Charge suspended. Crisis averted. We are pros at being hacked. One...
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It’s Complicated…
I just ended a 30 minute conversation with Meghan’s adolescent gynecologist. The fact that she spends 30 minutes on the phone with me speaks to a rare spark of passion for her field, and a genuine...
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Relax, Nothing is Under (My) Control
Today I dropped my daughter’s iPad. Down a flight of stairs. With no case. I’ve never seen quite so many pieces on a screen. But, it still turns on. And somehow we all managed to remain calm. My...
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Unsung Hero
There is a hero in this war on Cowden’s Syndrome, this draining task of “beatingcowdens” that we undertake each day. He doesn’t get much attention, and he prefers it that way. Yet, I shudder to think...
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Local Newspaper Coverage
This is already all over for my local friends, but for anyone else who is interested, this article was written for our local newspaper. It will publish in print Monday, but is in the online paper...
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The Best You Can…
Friday we met a good doctor. A new endocrinologist. He is young. He is friendly. He is smart. He is ready to be a doctor to Meghan. I am grateful. Friday Mom got her second cataract done and...
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Inspiration
Mother. Father. Daughter. Son. Spouse. Sister. Brother. Grandparent. Aunt. Uncle. Niece. Nephew. Friend. If we are lucky, we connect the word “Inspiration” with one or more of them in our...
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Meghan’s Rare Disease Day Video and Speech 2016
This is the text of the speech Meghan delivered at this year’s “Jean’s for Rare Genes 2” Fundraiser. Regardless of the monetary totals, which will come in the next days to weeks, I can assure you it...
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“Super” Man
Pop brought a smile, love and humor to our lives. Superheroes are invincible. No matter what they always find a way to pull through. They make complicated tasks look easy....
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Onward…
“Onward Christian Soldiers, marching as to war, with the cross of Jesus going on before…” That was one of Pop’s favorite hymns growing up in our Lutheran Church. He sang it loud. He lived it softly,...
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This is Our Reality
Alone, in a crowded room. As I look around frantically trying to figure out exactly where, or how I fit, with anyone, my mind wanders. I can’t seem to make conversation, or to pass the time socially...
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This Matters
A few weeks ago, as we were preparing for World Rare Disease Day, my principal allowed Meghan to speak to my school. She did an assembly for the entire school, first grades 3-5 and then grades K-2. In...
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DO SOMETHING!
The story of how a New York City girl got the ear of a West Virginia Congressman is a long windy one that involves the depth of love and dedication the United States Marines hold for their own. That...
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#BeatingCowdens #NoMatterWhat
The week was tough. The pain was real. The reflux was persistent. The fatigue, bone crushing. There were three missed practices and a missed school day, simply because she couldn’t. That NEVER...
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“…plans to give you HOPE and a future.”
When you’re in the middle of it, it’s often hard to see it. You’re in the middle of it, trying to be careful, protective and nurturing. You’re in the middle of it, often wide awake hours longer than...
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