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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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Appreciating the Rainbow AND the Storm
Let’s be real. Plain. Honest. Real. Sometimes we all want to throw our hands up. Sometimes we want to quit. Sometimes we want to hide in the closet or under the table alone. For a long time....
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“She’s so unusual…” and Other Ironies
This is quite a garble of thoughts… good luck! ** This blog was written over 2 days. The BLUE type was written today, Sunday July 19th, and the BLACK type is from Saturday, July 18th.** I’ve been...
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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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Invisible Illness – Stuck in the Middle with You
I don’t actually fit the “stereotype” of a middle child, as I was a younger sibling to my sister, (three years older) for 15 years, before my little sister and brother came along a few months apart. I...
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And then THIS happened…
And in the middle of the summer that wasn’t, Meghan’s drama teacher was out doing her thing, inspiring my daughter to step out of her comfort zone and reach new heights. I LOVE the drama teacher. And...
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“There’s nothing wrong with THAT girl…”
To the Young Couple on the Bus this Morning, You should know that I heard you. I heard what you said as you glared at my daughter. I saw you shake your heads in disgust and say, “There’s nothing...
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Pause…
Sometimes we need to pause. We pause only briefly, with hope of it lasting the whole week, and the reality that there will be interruptions along the way. We pause, knowing that pain is ever-present,...
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Anticipation…
Funny how things creep into the mind. Then there was this Heinz commercial from the 70s. Anticipation – is making me wait… Tomorrow we do it again. Surgery 13. Vascular malformation, left palm....
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Repetition
It never gets easier. No matter how sure I am about how fortunate we are, and no matter how much time I spend praying for those other mothers- the ones who are waiting through surgeries beyond the...
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Losing Count…
In school I count children. Religiously. Especially in September. I count them in, and out. I count pencils, to pacify my OCD. 12 to a table. I count days until appointments, special occasions, and...
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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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Do What You Love
It was almost 8:40 last night as I drove down Grymes Hill with Meghan. She hadn’t been home since we left for school at 7:20 that morning. She was facing a shower, dinner, homework, and a later than...
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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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“An Accumulation…”
I once read a story where a special needs mom described her daughter’s seemingly “over the top” fear of needles to a phlebotomist who had no frame of reference, compassion, or desire to understand. The...
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Recovery – Everything is Relative
recovery (Merriam – Webster) Medical Definition of RECOVERY : the act of regaining or returning toward a normal or healthy state Recovery. Is it a place? A state of being? A state of mind? Who...
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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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“BE the Change You Wish to See in the World”– Ghandi
With another fall season upon us, life is in full blown crazy mode. And, to be honest, we wouldn’t have it any other way. Yesterday, my 12 year old FINALLY throughly enjoyed a Halloween. It was such...
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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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