A Stranger to Change Starts a New Chapter

I’ll come right out and admit it. I’m not a big fan of change. I like what I like. I get comfortable. Maybe complacent. I’d like to call it “committed.” I’ll let you decide which definition of that term that you feel best suits me. Continue reading

Neuro-what?

Last week, I talked about one aspect of the 180-lb tumor story. But besides the Flight, Fight or Fright conundrum, I was also struck by something else:

Of the 200+ articles I found on the web, my trusty Google News search suggests that only eight actually named NF as the cause of the tumor. 8. Out of more than 220. The rest merely referred to a “rare genetic disorder.” What’s more concerning is this: the CEO of the hospital where the operation took place told CNN that it was the same disease as that of “The Elephant Man.” Except the latest research suggests that Joseph Merrick, popularly known as “The Elephant Man,” is suspected of having Proteus Syndrome – a completely unrelated disease. If the medical community doesn’t even understand NF, and the press doesn’t report on it when provided an opportunity to educate, it’s no wonder that so few people have ever heard of the condition.

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Keeping Perspective: Flight, Fright or Fight

For you news junkies out there, you may have heard about the 180-lb tumor that was removed from a 32-year-old Vietnamese man, Nguyen Duy Hai, in Ho Chi Minh City. If you saw it, you probably had an “oh my god,” “gross,” “wow that’s incredible” or a “can you imagine?” moment. I’ve had those moments too. I’m embarrassed to admit that I’ve also had the “I’m so glad it isn’t me” reaction. I think all these reactions are perfectly normal. It’s one way that we remind ourselves that despite all our complaints, there are still many, many people who have it worse than we do in some way, shape or form.

But for me, this story was an unpleasant reminder of what could happen to my little girl. Just six short weeks ago, I talked about the struggle for calm in the face of my daughter’s neurofibromatosis (NF type 1). Because it turns out that this Vietnamese man also has NF1.

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NF? What NF?

A couple weeks ago, I talked a bit about the NF Symposium I attended a few weekends ago and how I was struck by the conflicting agendas of the program participants. That was the cerebral side of things. In this post, I’ll be talking about the emotional aspects.

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Life’s Lessons: Looking at Wake’s 200th

There’s a funny thing that happens to some people when they become parents. I’m sorry to say that I’m one of them. And let’s face it – after some of my confessions, you, dear reader, aren’t really that surprised when I go all sappy and analytical on you, are you?

A champagne-soaked Tim Wakefield

Anyway, this week Tim Wakefield, a 45-year-old knuckleball pitcher on the Red Sox, recorded his 200th win. This was a cause for much celebration. Wake is beloved by Red Sox Nation, and rightly so. He’s been with the Red Sox for 17 years, and while his pitch might be unpredictable, the man is not. And while I was rejoicing in his win on Tuesday night, after six long weeks and eight failed attempts, it occurred to me that there are a number of life lessons that Tim Wakefield could teach my daughter: Continue reading

A fiery hot day

There’s something really amusing about an air conditioner being held up by firestarter bricks.

A Penny Saved…

I love piggy banks. I don’t know why, but I’ve been obsessed with getting K a piggy bank for ages, but I haven’t gotten around to it yet. So when my friend Laura suggested we drop by Made by Me to pick up some coasters she had made the previous week, we decided to stay and do some more painting. Three plus hours and a week in the kiln later, and here’s K’s new piggy bank. She’s already looking for coins constantly to put in her new pig.

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