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Happy Birthday to my boobs!
Remember where you were a year ago? I do. A year ago this evening I was pacing the floors. Making sure Meghan was packed for school. Triple checking my hospital bag. Planning my last meal by...
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Our Digital Footprint
Tomorrow Felix and I will be married 13 years. While in some ways 13 years seems like a long time – in other ways I sparsely remember that there was life before I married my best friend. And as...
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Puzzle Piece
I remember being much younger and loving puzzles. We would set them out on the table at home and everyone would take some time trying to get it going. They were big and had lots of pieces and were...
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Getting out of my own way…
I am actively, consciously, deliberately, trying to get out of my own way. I have hopes, goals, dreams, aspirations. I love my daughter, my husband and God and my family and friends. I want to be...
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Hope…
“Hope” is the thing with feathers “Hope” is the thing with feathers— That perches in the soul— And sings the tune without the words— And never stops—at all— And sweetest—in the Gale—is heard— And sore...
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And the body says… SLOW DOWN!
So it’s almost 2 AM on Sunday. And I have to say, I didn’t see this one coming. This is the part where I remind people over and over that just because you CAN live without a body part, doesn’t mean...
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Rare Disease Day 2014 – Through Meghan’s Eyes
Yesterday, our local paper published an article about Meghan and Rare Disease Day. http://www.silive.com/news/index.ssf/2014/02/post_738.html Today, the Borough President came to our school about a 4th...
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Kid of Achievement!
Today I turned 41. And while I am incredibly grateful for the gift of life, and for “More Birthdays,” as the American Cancer Society once put it, my birthday holds all sorts of emotional challenges...
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Twelve Surgeries in 11 Years: Living With Cowden’s Syndrome
http://blog.silive.com/gracelyns_chronicles/2015/01/twelve_surgeries_in_11_years_l.html The content of the article is pasted below. Please click on the link above to read the story in full effect....
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Meghan’s Rare Disease Day Video 2015
More about a successful event later. For now, news that we’ve raised over $10,000 to share between the Global Genes Project and the PTEN Foundation is plenty while we rest. PLEASE, spend 7 minutes on...
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To the Middle School Girls Who Doubt My Daughter…
July 20, 2015 To the Midle School Girls who doubt my daughter’s medical conditons: I want to start by telling you, I know it’s not your fault. You are generally healthy. You were raised by people who...
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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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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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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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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 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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Choose Positive….
The day after Christmas in our house is reserved for a blissful amount of peaceful rest. A few loads of laundry, a simple meal, late sleeping, playing with some new “toys,” recovery, and reflection...
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Inspirational Staten Islander 2016
An inspiration provokes a desire in you to be a better human. An inspiration can be any age, race, gender or creed. An inspiration speaks to your soul through their actions, and their behaviors....
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Rare Disease Day- Video Recap
World Rare Disease Day is February 28th. People all over the world will work to raise funds and awareness for over 7,000 Rare Diseases worldwide. In our house things are buzzing, as we prepare to...
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Rare, Invisible, Real – Jeans for Rare Genes 3
We were worried. Attendance was at an all-time low. We had picked a bad weekend, but it was too late to change it. We took the event off “eventbrite” this year, looking to take the fees they collect...
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