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I don’t know anything about “Cowden’s Syndrome…”
After last night’s late night strep diagnosis, there was no way I could send her to Bible School this morning. But, I had an appointment with the breast surgeon – a routine follow-up that I knew would...
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Keeping It Together
When it’s all about to fall apart, what is a mother to do to hold it all together? Anything she possibly can! Months ago I wrote a blog about how Cowden’s Syndrome changed… my phone. And its true. I...
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STUPID CANCER show!
I am absolutely high on adrenaline right now… In August the husband of a friend from High School asked me to be on “The Stupid Cancer Show.” https://www.facebook.com/stupidcancer I said yes, not quite...
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I wish cancer got cancer and died!
Today was rotten. And it is Saturday. I hate it when Saturday is rotten. And I am tired. And worried. And my heart is heavy. I guess that makes me in the same boat as most people. And then there was...
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Disconnected
Breathe in… Breathe out… Breathe in… I looked up at my Christmas Tree this week and was struck with the incredible sense that I would love to take it down. Now. I know that’s wrong for any number of...
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Today
In the spirit of one day at a time… today she feels well. Today homework is already done. Today her stress level is low. Today she swims in the water like the fish she longs to be. Today as I sit...
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Happy Birthday Dad
** I rarely go off the topic of Cowden’s Syndrome, but this is just so necessary. Tomorrow April 18, 2014 my Dad would have been 66.** Dear Dad, It’s hard to imagine a year has gone by since you sat...
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State of Mind – Part 2
There is something about sitting in a room full of pediatric cancer patients that numbs you, amazes you, and astounds you all at the same time. There was a time when the little superheroes, the...
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Champions of HOPE
It’s no secret that we have been followers of “The Global Genes Project” since our diagnosis in 2011. Meghan fell in love immediately with the denim ribbon, and their slogan, “HOPE it’s in our Genes!”...
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Scars…
There are days I forget. I forget that it’s not just Meghan, but also me with this rare disease. As a matter of fact, it’s actually uncommon for me to remember. Maybe it’s survival. Maybe it’s...
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Three Year Old Memories
It was about 4 in the morning on March 5, 2012. I was laying on the bathroom floor, vomiting the contents of my “nothing to eat or drink after midnight” stomach. I was dizzy, lightheaded and weak....
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“Cancerversary- a celebration of life BEYOND cancer”
To some people the idea of celebrating a “cancerversary,” or the anniversary of the day you became a “survivor,” is silly. But, to someone who is date obsessed, it makes sense to celebrate the...
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Dear Cowden’s Syndrome,
I’ve wanted to talk to you ever since you rudely introduced yourself to my family in 2011. Actually it wasn’t even a proper introduction. It was more like, “I’m here. I’m staying. What are you...
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Mortality
The awareness that one day we’re not going to walk this earth anymore. Not exactly dinner conversation, but, for lack of a more gentle way to say it, mortality is everyone’s reality. We face this...
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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 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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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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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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