Musings of a Marfan Mom

2011 in Review


As we prepare to say goodbye to another year, here’s a look back at some of the major events/favorite posts of 2011.

January: January was a packed month. M had his 2nd IFSP meeting and Baby J had his first echocardiogram. i reflected on J’s Marfan diagnosis, our birth experience, and how we talk about mental illness in the US when tragedy occurs. I was also diagnosed with lymphedema.

February: The Menininho turned 2 and transitioned easily to his big boy bed. I started treatment for my lymphedema and complained about non-Marfs labeling us as victims.

March: It felt great to reflect on some of M’s progress! Even as I celebrated that though, I was still beating myself up over setbacks. I realized I needed to give myself permission to parent. We also said goodbye to our trusty car.

April: Early in April I insisted we take a mini vacation to Half Moon Bay and it was certainly an adventure! Speaking of aventures, I felt like a true mom after M exhibited a very typical behavior before school one morning. After the dentist gave me a hard time about M’s autism diagnosis, I wrote out some sarcastic comebacks I’d love to say. And, I can’t forget about our trip to find a vibrating teether!

May: What a month! Definitely my busiest on the blog this year. Early in the month I tackled the idea of looking normal, then moved on to the child harness debate (tip: don’t make fun of my child wearing one). We traveled home for a wedding, so M’s behaviorist and I wrote a social story for flying. May was also the month of the Chase Community Giving Contest, and many readers shared their personal Marfan stories on the blog to help garner votes for the National Marfan Foundation, who ended up winning $40,000 in the contest.

June: Coming home from visiting family was so awful it’s laughable. Baby J had his first sleep study and the month marked a year since M’s autism diagnosis. M developed a talent for memorizing logos and what started off as a video for family became a lot more popular than we’d expected.

July: Our family adapted our 4th of July plans so that we could show the kids fireworks. While at the National Marfan Foundation conference, I received the results of J’s sleep study. About the same time, Baby J was evaluated for Early Start. I also wrote a letter to bathrooms everywhere.

August: In August I got to attend the BlogHer conference, something I’d wanted to do for a couple of years. M made a pretend play breakthrough and I wrote about recognizing the beauty of Marfan syndrome.

September: Autism was on my mind this month (ok, is it ever not on my mind?) when I wrote both about not caring what may have caused M’s autism and what I thought of Glee’s portrayal of Aspergers. Baby J had a fluoroscopy this month as well, and I wrote about what every mom should know about aspiration.

October: After Steve Jobs died, I was able to coax Mark into writing a guest post in tribute to him. I learned about the importance of crawling, especially for babies with connective tissue disorders, and discussed the importance of Marfan role models for the young Marfs. And of course, no October would be complete without a trip to the pumpkin patch!

November: Very rarely, I think about what would happen if I didn’t have Marfan syndrome and I wrote about all the ways my life might be different if I wasn’t a Marf, for better and for worse. Baby J finally started using his CPAP, and then he celebrated his 1st birthday a little early.

December: It took two attempts to get J’s follow-up sleep study. I theorized about speech delays in Marfan syndrome and created a gift guide for kids with motor delays. Perhaps most exciting, I opened my own Marfan-themed CafePress store.

Thank you to all of you who take the time to read and comment on my blog. I love getting to know you and learning from you. I wish you the happiest of New Years and look forward to what 2012 has to bring!

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  1. Great post! Thanks for sharing your summary of the year. Sounds like you have been really busy.
    Off to check out some of your links. Have a Happy New Year!!


  2. You have had a very busy year, but here’s to hoping for lots more fun for you and the family in 2012 and I hear you’re moving back to Ohio :)


    marfmom Reply:

    I am! :-)


  3. I had missed your post on Lymphedema. That was so helpful . I spent the last 3 years fighting my doctors to get a diagnosis of my leg and we finally got in 4 months ago and now I’m fighting to get some sort of treatment. It’s already irreversable and severe. I might have missed your post but that was so helpful. What type of doctor was the lymphedema specialist and how did you find him?

    Good summery .


    marfmom Reply:

    While once you have lymphedema you have it for life, I would not assume you can’t do anything about it. The cardiologist who diagnosed it referred me to a lymphedema clinic. There was a therapist there who worked on me twice a week or 6-8 weeks…I think she was a physical therapist who specialized in lymphedema. She wrapped my legs and they’d stay wrapped for 3 days. She also taught me a full body massage to get other lymphnodes to take on processing the fluid of the lymph nodes that died. My legs/feet look almost normal now, though I have to wear compression socks for good. If you have other questions, just send me an email! :-)


  4. Um, just when I thought I had a busy year, look at you!!! I hope 2012 brings lots of wonderful… and hope to see you at a conference. Until then, see you in blog-land. !


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