I’ve been thinking recently about preparing for a new baby.When I was pregnant with Menininho, I couldn’t buy much or set up a nursery because I knew we were moving across the country just weeks after he would be born. I bought a yellow blanket and a frog rattle, and that was it until we were settled in our new home.When J came we were in a tiny apartment, so he slept in our room. No nursery....more
Cute room. Fun post!more

Isaiah Austin Diagnosed WIth Marfan Syndrome

Unless you’ve been away from all social media the past couple days, you’ve probably heard that Baylor University basketball player, Isaiah Austin, was just diagnosed with Marfan syndrome. Austin was projected to be a late first round pick of the NBA draft....more

Alias and Nostalgia

We've been snowed in since Friday. There's nothing good on TV on the weekends and I've just wanted to zone out a bit, so I decided to re-watch Alias from the beginning (thanks, Netflix!). As I write this, I'm nearly halfway through season 2....more

It's Not About Inclusiveness

Tonight, my mom and I were watching the Olympics, and I was excited to see Oscar Pistorius competing. I'd read about him a few weeks ago and was hoping to catch one of his races. For those who don't know, Pistorius (South Africa) is the first amputee runner to compete in the Olympics (as compared to the Paralympics). He's an amazing athlete, and, as a person with a disability myself, I think it's particularly awesome to see him competing alongside able-bodied athletes. ...more
Yes! Words do matter! That's why I'm not giving up!   Inclusive means to include. I don't think ...more

The 'Dark Knight' Shooting in Colorado and the Danger of Assumptions

Last night, a gunman killed 12 people at a screening of The Dark Knight Rises in Aurora, Colorado, just outside of Denver. When a tragedy like this happens, it’s human nature to try to make sense of it and place blame. ...more
@BlogHer Great link! I will pass it on to my followers and repost on Facebook..thank you for ...more

Understanding My Son's Pain

I knew because I have Marfan syndrome too. I knew that any children I had would have a 50% chance of inheriting the disorder. My husband and I went back and forth on having children, weighed the pros and cons. Would it be selfish? I wondered that sometimes. But I also believe that motherhood, however you come by it, is one of the most selfLESS things a woman can do, so maybe wanting to be pregnant wasn’t so bad....more
i'm so sorry that you are going through this.  i had to look up marfan syndrome, i didn't know ...more

The Battle Over IUDs

Dear Rep. Wachtmann,...more
@xtremeparnthood @BlogHer thank you! :-) it is some scary, scary stuff going on right now in ...more

Alcohol at Teen Parties: Where Is the Line of Responsibility for Parents?

Anyone catch the Today Show yesterday? Matt Lauer interviewed a couple from my neck of the woods: a Stanford professor, Bill Burnett, and his wife, Carol. The Burnetts agreed to host a party for their 17-year-old son and his friends to celebrate a football win, under the condition that no alcohol be present. The Burnetts were home when the teens arrived and brought them snacks, but allowed the teens some privacy (kids were in the basement, parents upstairs). At 11 pm police arrived, responding to an anonymous complaint that there was alcohol at the party. Although the Burnetts assured the police that no one had brought booze, the officers found that some had been snuck in....more
With this case, ridiculous. They laid down the rules, and a gathering of any size can easily ...more


The Menininho has been having a lot of difficulty over the past week. He's been in a different time zone, away from therapies, away from Mark and me much of the time we were house hunting, around 40-some extended family members he doesn't see often, and now that we're back at home one of my best friends from college ("Aunty K") is visiting. Like most people with autism, M doesn't handle changes in routine well....more

If I Didn't Have Marfan Syndrome

Usually I’m pretty rah-rah-rah about Marfan. I love the Marfamily, I think Marfan has brought some positives to my life, you know the drill. But these past couple of weeks, a few hard things have happened within our community. I am, once again, reminded of some of the unfairness of this syndrome. So, today I’m indulging in a little (rarely played) game of “what if I didn’t have Marfan?"...more