Musings of a Marfan Mom

My Blog Hop Post

| 27 Comments

Hi! I’d love to welcome all you ladies coming from the No Go BlogHer blog hop extravaganza! Pull up a chair and stay awhile! And, if you have NO idea what I’m talking about, you can get the background information here and go here to link up your post for a chance to win fabulous prizes.

1) When did you start blogging? I started blogging in 2007, shortly after my husband and I got married. I thought it would be a fun way to keep in touch with family. I became a more serious blogger after my first son was born, which is when this blog, Musings of a Marfan Mom, was born.

2) Why did you start blogging? Living with Marfan syndrome, a rare disorder of the connective tissue, is not always easy. When making pregnancy decisions I wished that I had access to more women who had been through a pregnancy knowing ahead of time that they had Marfan, so I could hear what it was REALLY like. I also realized that good medical information on the risks associated with pregnancy and delivery are hard to come by and that no one talks about what happens after the baby comes (for instance, what happens after the baby hits that “don’t lift anything over x # of pounds” weight limit?). My younger brother urged me to create a blog where I could provide information on my experiences in the hopes of helping someone else and to be able to connect with other “Marfan Moms” in my position. So, I did. :-) (Hey, every once in awhile my brother has a good idea!)

3) What is one thing you are going to do this week that is WAY cooler than going to BlogHer? We’ve got doctors’ appointments! I know all the ladies going to the BlogHer conference are insanely jealous, but I’m going to be having a blast taking the Menininho to his therapy appointments, 18 month well-visit, and my own appointments for Smudge (22 weeks down!)

4) Share a post that you think says a lot about you or is your favorite. I think that since my blog is about motherhood, it’s fitting for me to highlight a post about my 2nd pregnancy. Why I’m Having a Baby was written in response to the questions, both asked and unasked, about why I’d go through a high-risk pregnancy that has a 50% chance of my baby inheriting my syndrome.

Thank you for stopping by! Leave a comment and I’ll be sure to get back to you. :-)

Be Sociable, Share!

Related Post

27 Comments

  1. Love meeting new people and learning new things everyday! Thanks for hosting this week – following you now and hope you’ll stop by and say hi too!

    [Reply]

  2. I love your blog. I’m not going to lie – I had never heard of Marfan until I met you! And then I saw it on that one episode of Grey’s Anatomy and I was like, “MAYA!!!” lol!

    I think you’re brave for addressing questions people might have about your pregnancy. It’s none of anyone’s business, but I enjoyed reading your reasoning behind it. Yay for 22 weeks down!! That is fabulous! It seems like you *just* announced your BFP!

    [Reply]

  3. I’ve never heard of Marfan Syndrom before. It’ll be interesting to research it (I’m one of THOSE people who like to research things LOL).

    [Reply]

  4. Thank you for stopping by my blog.
    You are so right in your post about having children, the choice is up to each individual and as we all know there are no guarantees in this life. We cannot live our lives in fear, but educate ourselves and do what we feel is right. We should also not judge others, we do not always know or understand.

    I think you look beautiful and what a blessing it is that you have been able to have children You have also been blessed to have such a wonderful husband to love and support you and together love and raise your children. Each day is a gift and even if there is pain, there is also joy.

    [Reply]

  5. I am excited about exploring your blog more. Hope all the appointments go well.

    [Reply]

  6. I really enjoyed looking back on some of your blog posts, can’t wait till I have the time to read some more. Thank you for sharing.

    [Reply]

  7. Love your answers. Yay for No-Go BlogHer!!! 😉

    I’ve never heard of Marfan until now. I love your post… LOVE this —> “If we live our lives in fear of the far-out what-ifs, we miss out on a lot.” That is so very true and it sometimes makes me ILL when people think they have a right to jump in and tell us our decisions are the ‘wrong’ ones. They do it all out of fear.

    Someone told me one time that if I did something I wanted to, it would be very dangerous and I shouldn’t do it. I told that same person that going to the grocery store is dangerous. I could be hit by a car or struck by lightening. Who knows? When it’s your time to leave this Earth, it’s your time and it really doesn’t matter where you are or what you’re doing. Living in FEAR is… well, it’s not living.

    Now, 22 weeks along, I can read along with your for the rest of your pregnancy!!!

    Thank you for sharing something that you really didn’t have to to begin with, because quite frankly, it’s nobody’s business but yours.

    [Reply]

  8. i had never heard of marfan syndrome before either. thank you for educating me =)

    i look forward to reading more about you!

    [Reply]

  9. Me and my mom were both tested for Marfans back in the early 90’s but she didn’t have enough markers and since it is genetic they stopped testing me. I have always wondered if maybe that doctor was wrong and missed something in my mom. Many years after they said it wasn’t Marfans, she was diagnosed with Sarcoidosis which they originally thought was not genetic. At least 4 people in my family have it though and new research is suggesting perhaps, it is genetic.

    Me and my mom both have mitral valve prolapse (all 4 chambers leak on my mom “moderate to severe”).
    our wingspan is longer than our height.
    The roof of my mouth was so arched and my teeth so crowded I had to have a palate expander along with many years of braces.
    We are both are very near sighted and my mom had cataracts by age 45.
    My moms heart goes into A-Fib at least once a year and has to be shocked back to a normal pace.
    I have stretch marks on my hips that sort of just appeared.

    Back then it would have been wonderful to have the internet so we could research and connect with others! We were going by what doctors told us and they painted a pretty bleak picture of Marfans!

    [Reply]

  10. I haven’t heard of Marfan ever, in my entire life. Just goes to show you how small my world can be. Impulses are impulses and instinct is instinct. I’m glad you followed your instincts. As long as you know what’s on the line, I could never see someone with Marfan as being bad or evil for wanting to have children. It’s not being cruel by far. But mankind many times can be mean.

    What everyone wants is their own choice. I believe that in every situation. Now I must head to the Wiki to see what else I can find out about this.

    [Reply]

  11. Popping by from the No-Go BlogHer Blog Hop! You are an inspiration my friend!

    [Reply]

  12. Interesting blog! Found you from the N0-Go BlogHer Hop. I, too, am just learning about Marfan now. Keep on! I’m following you via GFC (crumbdonut) & look forward to your updates.

    [Reply]

  13. Hello! Stopping by from NoGo BlogHer and am now a follower. Your blog is very informative on the subject of Marfan.

    [Reply]

  14. You know, one of the things I really respect about you is your determination to share with and educate others about Marfan. It’s clear from the comments that you’re reaching so many people who’d never heard of Marfan before. I’m one of them. :)
    Thanks so much for hosting this blog hop. Can’t wait to meet a few new friends! Have a great day Maya.

    Kristi, Live and Love…Out Loud
    @TweetingMama

    [Reply]

  15. It is really great to meet you and learn about you. I’ve never heard of Marfan and I’m interested in reading the 2nd pregnancy post. I see we have some similarities in regards to when we started and a chronic illness. I’m glad I came by.

    [Reply]

  16. It’s nice to meet you! Thanks so much for sponsoring this blog hop! My only experience with Marfan was with children with visual difficulties…have you had any problem with your vision?

    [Reply]

    marfmom Reply:

    Actually, I’ve been pretty lucky in that other than wearing glasses for near-sightedness, my vision is good. A fair number of my friends have had lens dislocations though.

    [Reply]

  17. I loved your post on Why I’m Having a Baby. It is true. You never know with life. That is why when people asked me if I wanted a boy or a girl I told them I wanted a healthy baby and left it at that.

    [Reply]

  18. Thank you for starting off the Blog Hop! How fun! :)

    I loved getting to know you and reading your post on Why I’m Having a Baby… Very touching.

    [Reply]

  19. Thank you for hosting the No-Go BlogHer hop! I am new to your site and have become a new follower. I honestly did not know what Marfan syndrome was and when I saw your blog name I had no clue what is was about. I am happy to meet you and hope to get to know you more.

    [Reply]

  20. Thank you Maya for hosting this blog hop and for enlightening us about Marfan!! I’m off to read your pregnancy post now.

    [Reply]

  21. Thanks for sharing you story. I’ve never heard of Marfan syndrome before. Your determinatin is inspiring!

    I’m your new follower!

    [Reply]

  22. love your blog..im so in on your blog hop

    [Reply]

  23. thanks for hosting this blog hop…. i am going to go and read on marfan syndrome now…
    thanks again

    [Reply]

  24. Adorable!! Thanks for this wonderful blog hop!
    Nice to meet you

    [Reply]

  25. You are right, you never know with life! Good for you on doing what was right for yourself and family instead of what others thought was right! Thanks for sharing! Have a great night!

    [Reply]

  26. I know the feeling about doctors appointments and therapies!
    Hang in there and thanks for the blog hop!

    [Reply]

Leave a Reply

Required fields are marked *.