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Summer List
I have been walking around all day with that nagging feeling in my stomach. I have packed my bag, and Meghan’s too. I have filed, organized, and made lots of lists. There is a new schedule on the wall...
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Hyper-vigilance
Hyper-vigilance. Although Wikipedia is not my favorite source for all things – it defines this quite well. Hyper-vigilance is an enhanced state of sensory sensitivity accompanied by an exaggerated...
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The War Ain’t Over Yet…
Tonight wasn’t one of our better nights. And, as we drove home, and sorted through a few things, I offered Meghan this outlet. I told her writing helps me sort out my thoughts and get refocused. Here...
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The Story of the Girl and Her Mom
So, four years ago they diagnosed this girl with a rare genetic disorder called “Cowden’s Syndrome.” Soon after they diagnosed her, they diagnosed her mom too. And the mom and the girl read...
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Making the Most of It All…
Sunday night, coming home from a swim meet, Meghan outlined her goals. Among them included, “no surgery for a whole year.” To someone who hasn’t had 4 surgeries in the last 12 months, that may not...
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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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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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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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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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“…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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“Hey, I follow you on Facebook…”
There we were in the back of DSW looking for a pair (or two for accuracy sake) to fit the feet of my girl for “Aunt Em” in her school’s performance of “The Wizard of Oz” next week, and a woman...
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A Letter to Me as a “Mommy-to-Be”
Dear 30 Year Old Me on Mother’s Day, Listen up. Yes, you – acting as the general contractor; living through and participating in your house overhaul, while carefully moving your pregnant belly...
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Aunt Em, Arista, Albany, and (Almost) an Ambulance
THAT would be the alliteration to sum up the week that was, Thursday May 5th – Thursday May 12th. Sometimes I get annoyed at myself that this blog gets neglected. Then I realize it’s because sometimes...
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In a Dark Room…
I’m thankful that some nights she still invites me to chat with her in her dark room Late After she should be asleep I’m thankful that we can relate to each other Different – incredibly different Yet...
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N.O.S.E. an Acronym that Makes Sense!
So many things in life make no sense at all. I don’t need to fill in those blanks for you. No doubt you have a bunch of your own things in mind. The illogical is part of our existence here. What we...
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