I have one request. Have compassion.

Advance apologies – I’m going political on you. But long-time readers of this blog know that this topic hits very personally to me. I was listening to NPR the other day, and a story caught my attention. The story was about a just released documentary entitled, “After Tiller.” Created by pro-choice advocates (so I’m sure it has quite a lot of bias), the film attempts to communicate the reasons why doctors and clinics who perform late-term abortions make the decision to continue doing something that is so clearly fraught with danger. From what I understand (and I should note that I have NOT yet seen it), the film also looks at the people who get late-term abortions for both medical and non-medical reasons. The part that struck me was this statistic: Today there are only FOUR doctors in the US who perform late-term abortions. To get to them, it seems you often have to be pretty desperate.

This is the box that Carrie put together for us to memorialize Baby Girl. Filled with pictures, blankets, hats and footprints, it's something we cherish.

This is the box that was put together for us to memorialize the life that wasn’t. Filled with pictures, blankets, hats and footprints, it’s something we cherish.

Six years ago, my then husband and I were presented with an almost unthinkable “choice.” Continue reading

In Pursuit of Happiness

A couple months ago, I had dinner(ish) and drinks (more of this) with a friend, and in the course of our conversation we spoke of many things – “of shoes and ships and sealing wax, of cabbages and kings.” We talked of opportunities passed by and wasted potential – and ultimately, whether they mattered when considering one’s overall happiness. Continue reading

October 15th

Thanks to my friend Jade for posting this.

For more on my story, read here.

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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Where Medical, Political and Educational Worlds Meet

…Or do I really mean “Collide”? On Sunday, Jamie and I attended the annual Neurofibromatosis Symposium conducted by Harvard’s Center for Neurofibromatosis and Allied Disorders (CNfAD). As many of you know, K was diagnosed with NF1 just a couple months after she was born. To date, her condition is relatively mild, and with luck it will remain so.

There is something strangely compelling about taking a peek into the health care sausage factory (I’m sure my buddy Paul could tell you a whole lot more on this front). At this Symposium, there was a microcosm of the health care industry. Physicians, clinicians, social workers, advocates, not-for-profit organizations, parents, patients, educators, lobbyists – with the exception of actual honest-to-goodness politicians – I think we had every category covered, with many people present who filled more than one of those roles. It’s hard to know exactly how many people attended, but at a shot in the dark guess, it was probably about 100 people.

Let’s accept as true that everyone there had an ultimate goal of helping people with NF. The manifestations of how best to reach that goal, on the other hand, varied widely.

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