MarfMom : MyBlogHer Profile

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Understanding My Son's Pain

iv pole

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.  Read more >

The Battle Over IUDs

Dear Rep. Wachtmann,  Read more >

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

alcohol

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.  Read more >

Helplessness

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.  Read more >

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My life as a mother to two boys with special needs, while having Marfan syndrome myself

Information

Full Name
Maya
Member Since
December 2009
About Me: 

I'm a 20-something outspoken Latina with Marfan syndrome. I blog about being the mother of two sons with special needs while having a genetic disorder myself. When I’m not chasing my toddler or volunteering with the National Marfan Foundation, I love writing, watching medical dramas on TV, and playing Mastermind with my husband (I always win!).

Profession: 
Public Health
Location: 
OH

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