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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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Rare Disease Day 2025
This is technically our 14th “Rare Disease Day,” since our PTEN diagnoses came in the fall of 2011, but if I am fair, the entirety of 2012 was such a blur that I feel like this is more like the 13th...
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Perfectly Imperfect- Orchids and Life Lessons
I don’t remember when I got the first orchid. I don’t remember who gave it to me or even what color it was. I remember it was after looking through droves of flower photos from my father’s images...
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