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Normalize This!$%#*!
Two hospitals, two IVs, two legs, four paws, and a tail. That is the short version of the last 2 weeks. On the morning of May 15th, a few days after a week of intense finals, I drove Meghan to the...
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My (Unsolicited) Advice…
I remember sitting at my computer in early 2004, sensing that things were not right with my then 4-month-old. A tumultuous birth was followed by months of colic. I was sure I was doing everything...
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Dirty Little Secret
Remember that killer headache you had last week? Or the time you fell off your bike? Or the day you slammed your finger in the door? What about the time you had a gallbladder attack and you ended up...
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Dragon Scales
Art on Instagram@vic.ink_ A dragon? That’s what I thought to myself when she first told me. That, along with a million other mom thoughts that happen when your 20-year-old declares that a new tattoo...
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Dark Days/Finding the Light
I am a March-August kind of girl. I love warm weather and lots of sunlight. Long walks are my favorite. There is nothing that soothes me more than putting on a pair of sneakers, putting my music on,...
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…in the basket of the shredder
The primary care, a title he earned through the path of least resistance, abruptly left the practice in December. There was no notice, and I found out quite by accident. But, none of that surprised...
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Let’s talk about PTEN
… said almost no one except us. Ever. That’s why it was intriguing and exciting when Kristin Anothony from the PTEN Foundation contacted me last spring and asked me to share my story on a podcast....
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Have you had any surgeries?
It’s an actual question people ask. And I guess it is a fair question for most people. But, we aren’t most people. We are 1 in 200,000 tumor growing Cowden’s Syndrome people. The question makes...
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Recovery Room- The Waiting Place
The recovery room is the land of mixed emotions. So grateful to see her on the other side of another surgery, yet so terrifying to see her pulse ox dip as they race to get her on oxygen. Gutting to...
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Agony
Last night was the kind of night I never talk about. My girl tells me I let the world off easy because it makes everyone else uncomfortable when we talk about our pain. She insists it’s not my job to...
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Tuck and Roll
Somewhere in the middle of Tuesday night when they were pulling blood pressures like 68/37 I started to adjust my head that we were not headed home Wednesday. I had hoped, planned and packed for...
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Narcan?!?!?!
We got home from the hospital late Friday of last week. After 5 days and 4 nights-her longest hospital stay since she was a toddler, we trekked from Long Island to Staten Island, a 35-mile journey...
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Status Update…
We met with the surgeon for Meghan’s follow-up visit yesterday. He was so pleased with her, and with how incredibly hard she is working to recover. He is amazing, her orthopedic surgeon. He is humble,...
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No Rest for the Weary…
I have found when I am just exasperated by life, I get really quiet. Like hide in a corner, under a table in a dark room kind of quiet. And if you’ve been looking for me, that’s where I’ve been since...
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Just Let Me Know if I Can Do Anything….
Spoiler alert… If they are messed up enough from something, a loss, a trauma, or literally ANYTHING that prompts you to ask that question, they are likely INCAPABLE of figuring out what they need, let...
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My Letter to the CEO of Disney
This is not the way I intended to talk about Meghan’s next surgery. However, as I have told her so many times before, we know ours is not the only story that needs telling, but who are we to complain...
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The Glider- from Birth to Bilateral Mastectomies
The glider I added to my baby registry in 2003 was arguably the piece I cared the most about. I am not big on stuff, and am unimpressed by “fancy.” I am all about practical functionality. That glider...
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“I Support The Girls”
Years ago when we went to have Meghan professionally fitted for a bra, Tina was kind, helpful and just a wonderful human. She fitted Meghan a few times through the years and at one point the...
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Today Was a Difficult Day
There is no longer a need for pain meds. At least not the ones that heal your physical pain. The pathology, all nine pages of it, has been sent to several places for “additional review” due to the...
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Red Flags and Butterflies
It’s really a dizzying vacillation between the two. So much time is spent at the red flag, laser focused, all hands on deck stage, that when there is a pause to give some time to breathe, and maybe...
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