Musings of a Marfan Mom

2012 in Review


2012 was definitely a busy year for our family! Here’s a recap of what went down on the blog.

January: We had to say goodbye to the Menininho’s school. It was incredibly difficult. We bought a house in Ohio and found new specialists for Baby J.

February: M turned 3 and J was hospitalized with RSV. I finally lost the baby weight from my pregnancy with J, and J lost his sleep apnea.

March: My friend Danielle, a pharmacy tech, guest-posted about how to choose a pharmacy. I was honored to be featured in WebMD magazine. I also wrote a letter to parent advocates about how we discuss the murders of disabled people by their parents. The month closed out with So Your Child Just Got Diagnosed with Marfan Syndrome, a post about getting connected with resources.

April: My friend Neo guest-posted about her feelings on Autism Speaks and their blue lightbulb, in light of it being Autism Awareness/Acceptance Month. I shared a special bedtime moment and recapped the National Marfan Foundation’s Heartworks Gala.

May: We heard the sweet, sweet question “cause why?” from M. My brother got married and M served as ring bearer. Baby J tried out AFOs but it was a rather short-lived experiment. We stopped them after about a month. We also decided to try putting M in a Montessori preschool for the summer.

June: We took a trip to see our out-of-state specialists. I wrote a sleep study social story with pictures in anticipation of the Menininho’s first sleep study. I also wrote a piece about how special the Marfamily is to me.

July: I added some new sections to the blog. Unfortunately, the Montessori program didn’t work out and we had to remove M. I also brought up J’s GI issue, which brought about an ER visit and an endoscopy.

August: August was a fun month! We had the Marfan conference, which was a blast. While there, I gave a workshop on preparing for college when you have a disability, which included links to scholarship opportunities. The kids and I went to visit my mother, and came back in time just for M to start back up at preschool. The drama that’s been J’s GI issues took another turn too.

September: After a birthday party, I had conflicting feelings about the line between accepting your child for who they are and pushing them to be the most successful version of themselves, then switched it up to muse about the idea of different versions of ourselves. I argued against the idea of Suicide Prevention Week. Finally, Mark & I were excited to announce our adoption plans!

October: Busy month on the blog! I shared what I was learning about adoption ethics, we went to the apple orchard (which I’d really missed going to while we were living in California), and of course visited the pumpkin patch too. My friend Vicky shared her experience with breast cancer anemia, surgery, and genetic testing in the hopes of helping other people with Marfan syndrome. This kicked off a new section to the blog as well. And on the special needs parenting front, I asked whether readers parent their typically developing child differently than their child with special needs and shared the hardest thing for special needs parents.

November: This was the month for playing catch-up and doctors’ appointments! I finally got around to writing about my October hospitalization and Halloween. I shared some tips for knowing when it’s time to fire your doctor, J had a hydrogen breath test, then he and I traveled for his echocardiogram and to meet with a connective tissue disorder GI specialist.

December: Frustrated at some of the responses we’d received to our adoption plans, I wrote about the different types of adoption and why you should never presume to tell someone what type they should choose. I shared photos from J’s Chicka Chicka Boom Boom themed birthday party and published parts 1 and 2 of the Marfan/RD Gift Guide.

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 2013 has to bring!

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  1. Thank you for writing your blog! Happy New Year


  2. I have Marfan and just got the results of the genetic tests of my son yesterday, finding out that he has it too. today is his 1st bday. I look forward to reading you blog.


    marfmom Reply:

    it’s nice to meet you, robin!


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