October 19, 2010
by marfmom
5 Comments

A Call for Posts

A large part of the reason I started this blog was to provide women with Marfan and related disorders a place to get a realistic story of pregnancy/motherhood and to allow us to connect with each other. As I get closer to the time to deliver Smudge I’ve been spending some time reading birth stories online. However, none of them really seem to apply to me. They’re all either beautiful stories of unmedicated homebirths (which I’d love to have but personally can’t) by able-bodied women or super traumatic stories of emergency c-sections (a little close to home). Where are the stories of the births of mommas with disabilities? Or of great epidural births?

That got me thinking. I’m obviously going to need to take a short hiatus from writing once Smudge comes, but I’d like the blog to still have new content during that time. Guest posts could solve that. So, I’m opening:

A Call for Birth Stories From Women With Disabilities

Whether you knew about your diagnosis ahead of time or not, whether you had a vaginal birth or a c-section, medicated or not, I want to hear your story. Positive birth stories are awesome, but if yours wasn’t what you hoped please feel free to submit it too because I want to keep this blog real and the reality of having a disability is that sometimes our deliveries are complicated. I’m going to leave the term disability open-ended, but I’m basically looking for high-risk pregnancies (or what would have been if you’d known your diagnosis). You don’t need to have a connective tissue disorder.

If you’re interested in having your birth story published here, email me your story at marfmom@gmail.com. You can post using your own name and a short bio, or you can post anonymously. I’m due in 7 weeks, which means I’ll probably be having the baby in the next 5-9 weeks. So, the sooner you can submit your post the better, and I’ll take as many as I can get. If you have any questions, let me know. Feel free to submit a picture as well.

Spread the word!

October 18, 2010
by marfmom
8 Comments

Tonight: Marfan on Discovery Health

Tonight, on Discovery Health, the show Dr. G: Medical Examiner will feature Marfan syndrome. Medical examiners work on the deceased, so as you might be able to tell, the storyline is going to involve someone who has already passed away.

The patient in question is a 22 year old woman who died suddenly while pregnant. The episode will show the medical examiner learning the cause of death was an aortic dissection from Marfan syndrome.

Obviously, this is a sensitive subject. I plan on DVRing the show, but I haven’t decided whether I’m going to watch.

There are a few things to keep in mind. One, there are many different ways to spread awareness of Marfan syndrome. We need to use all of them. Who knows what type of segment will reach out and touch a person, in what type of piece they will recognize their own story? Although the National Marfan Foundation doesn’t have final control over what information gets put into a show, they do work very hard to make sure key messages are presented so that viewers are getting accurate information.

Two, please keep in mind that this is the story of a woman who did not know she had Marfan syndrome. Her story is not the norm for pregnancy in Marfan. As with any aspect of Marfan, early detection and consistent monitoring is the key for living a long, happy life. There is research to show that healthy pregnancies and deliveries are possible for us and I’ve heard so many beautiful success stories both through my involvement with the NMF and this blog.

If you decide to watch the segment, I’d love to hear your thoughts. If I do watch, I may post here about it later.

October 15, 2010
by marfmom
1 Comment

Friday Favorites

Welcome to Friday Favorites! If you’re new to the blog, here’s how to play along. Every Friday I devote my post to showcasing awesome blog posts by other bloggers that I’ve read over the past week or two. Then, I invite you to do the same and link up. This is any easy way to share the love and find great new blogs.

This week I’m only showcasing one post, and I think you’ll understand why.

A woman named Jill lost her beautiful baby boy, Joshua, recently. While she’s not someone I’ve ever conversed with, I knew of her through the congenital heart disease community and had read her blog a couple of times. Without going into detail, Jill and her family are having a particularly rough time right now, even beyond just handling the death of their son.

Loralee, a blogger I respect very much, has teamed up with Kristine (a friend of mine) to do a Letter of Love campaign for Jill and her family. Loralee is inviting anyone who would like to to write an encouraging letter for Jill’s family. Loralee is collecting them all and then Kristine will print and bind them so the family will always have them. Even if you don’t know of Joshua or his family, please consider writing them a short note and sending it to Loralee. Loralee is asking that all notes be sent to her by this Sunday. Details are here.