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Six Wheels and a Boot
At any given point during our 10 days in Disney, our party of three also had six wheels and a boot. We must have looked unusual to anyone who passed us by. I traveled with a virtual pharmacy in my...
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Forced Pause…
My sister had a series of hamsters when we grew up. I don’t remember how many. I actually don’t remember much besides the smell of the cage, and the wheel they used to run in. They never seemed to...
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Check in…
“The grass is always greener…” Blah, blah, blah. One of those phrases hard to hear, yet typically true. I woke for work so many days wanting an extra day off, to do nothing. A break from it all. A...
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Desperate times…
I took the knee scooter to the mall. I brought my husband. Well, technically he brought me. And he lugged the giant contraption down the stairs and into the back seat of our “big enough for most...
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PTSD is real…
I catch the judgments when I mention PTSD to even those closest to us. I have the utmost respect for our military, and our servicemen and women. They are the front lines, defending us and keeping us...
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Don’t give up on a (limping) Zebra
You know that person in your life. The one who always has a dramatic tale of woe? The one who you tire of hearing from because all they do is talk about their health? Because honestly all that...
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Show Up
It was three MRIs in two days that week in November. That’s too many, in case you were wondering. One was an extension of an August MRI, which had been a knee follow up. If you’ve been following –...
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“…What is essential is invisible to the eye.” Antoine de Saint-Exupery
“You don’t LOOK sick.” Like all things your perception changes over time. When I was much younger if someone asked me for the most hurtful thing someone could say to me – it would have been something...
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Rare Disease Day- Video Recap
Rare Disease Day Video Flashbacks… This year World Rare Disease Day is Saturday February 29, 2020. As we prepare to do what we can to raise awareness of Rare Diseases… I’m reblogging this post with...
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Pandemic Got Your Tongue?
NYC #COVID19 NYC #Covid19 There are things you could do without ever experiencing. Clearly #COVID19 is one of them. I live in NYC. I have lived here every one of my 46 years. I was born and raised...
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Connected…
I was staring at the screen looking at 14 other mothers. Women who have at least one child with the same PTEN mutation my girl and I have. A quick scan of the “room” on this Zoom call showed me newly...
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What about the crayons?
The questions were simple enough. “What about basic supplies? What about the laptops? What about the crayons? What about the things multiple hands touch over a short period of time every day?” The...
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I’m not afraid of the dark, and other COVID-19 revelations…
For Cowden’s Syndrome patients, there are surgeries. There are different kinds for different people. But, inevitably there are surgeries. When most young people talk about being afraid of the dark,...
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Blessings and Sorrows….
Blessings and sorrows are not mutually exclusive. Disappointment can exist alongside gratitude. You can have hope while being grounded in reality. Faith doesn’t mean you’re never sad. Laura Story wrote...
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What will your verse be?
“…That the powerful play goes on and you might contribute a verse.” -Walt Whitman (O Me! O Life!) “What will your verse be?”- Robin Williams (Dead Poet’s Society) I couldn’t sleep last night. This...
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Seventeen- The Days Are Long But The Years Are Short
August 9, 2020 Dear Meghan, HAPPY 17th BIRTHDAY my girl! This is not the birthday we planned, but it will be amazing in its own way. These last few months have been a lesson for the world, that plans...
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Meghan Needs Your Opinion
Below is the essay my daughter Meghan wrote and is planning to submit with her college applications this week. She is planning to pursue a career in the medical field. She wants to “do better.” Please...
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4th Grade, Zoom, and Searching forBalance
I sat on my couch Thursday for the first time since September. It was an odd feeling to sit somewhere other that the desk chair that seems to have a permanent imprint of my bottom. I sat down after...
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Here. We. Go.
It’s just after midnight on Sunday, January 17th. I should be sound asleep, but instead I’m propped up in my bed with my iPad in hand. There are suitcases in the living room and a cooler of food and...
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Easy is for Amateurs
I knew it wasn’t going to be easy. I did. I just didn’t realize it was going to be THIS hard. I mean, maybe I should have. Easy is for amateurs after all. But, I didn’t realize it. And as a direct...
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