Musings of a Marfan Mom

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It’s been awhile, but today I’m writing as part of Mama Kat’s Writers’ Workshop. I’ve chosen prompt #1: In what way were you labeled as a child and how did it affect you?

I was diagnosed with Marfan when I was 8 years old. The cardiologist painted a grim enough picture and provided such little take home information that my parents were understandably quite frightened. The natural consequence of this was that they became overprotective.

From that time on, I was labeled as the weak kid, the beanpole, the one to be careful around. The teachers, I’m sure, thought they were doing me a favor with their speeches. One had kids in the class list ways they could treat me well. Another cautioned to my fellow students that if I fell down the stairs, I’d get really hurt.

Everywhere I turned, this message of being fragile was reinforced. And kids? Some kids can sniff out weakness a mile away. I was bullied for years: taunts, threats, and physically being pushed around (yes, even into a trashcan). I wasn’t sure what to do. Part of me retreated into my studies, part of me was depressed, and part of me was angry. I reacted by trying to pretend like there was nothing wrong with me. Since those with authority over me wouldn’t let me do the kind of tasks that were safe for me to do, I began to engage in activities that definitely were not safe for me: carrying heavy containers, playing dodgeball, running till I couldn’t catch my breath.

It took me a long while to see myself as strong and capable. The comments from the teachers, the bullying from the students…they forever affected who I am. It’s not who I am anymore, this weak, passive person, but the memories will never leave me.

So parents: please be very conscious of how you label your children with special needs/chronic illness. This doesn’t mean you ignore their limitations or push them to disregard their restrictions, but that you allow THEM to define how their illness defines them. Make sure your children’s teachers, friends, and extended family are focusing on what they do well instead of any negative that their illness brings.

These days, I’ve proudly labeled myself a Marf. Instead of meaning one who is weak and fragile though, it stands for one who is strong, creative, and able to go with the flow.

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15 Comments

  1. I never would’ve thought of you as weak, because you are so strong now. So strong, you stand up for others. Thanks for letting us get to know you a bit more, and where you’ve come from. <3

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  2. Yay, Maya, you are in the three before me so I ended up at you! Small world here in the blogosphere! You wrote a very candid and moving post. In ways, we have come a long way as far as helping kids understand other kids (and helping adults understand kids), but I can see how at that time in your life all of that feedback/special treatment did impact you so deeply.

    I don’t remember if I have shared this w/you, but my family has Long QT syndrome (heart arrhythmia) in a significant amount of members (husband’s side/genetic, so not me specifically). My sister in law died at age 30 but we didn’t know it was because of Long QT; it was my other sister in law’s determined sleuthing that identified the issue. THEN, there were lots of little, active kids in the family being diagnosed. I remember my niece (daughter of Ann, who died), jumping into the pool and swimming all the way from deep to shallow end without taking a breath, and her dad (Ann’s widower) getting so anxious because she had to hold her breath so long. Over the years, the kids have for the most part handled it great; there were some sports that were contraindicated, but several of them became beautiful dancers and somehow it all worked out. But I think living with the spectre of a “cardiac condition” when they looked just fine created a different kind of sense in their heads.

    Take care!!

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  3. This is a great post. It is interesting how parents handle a disability or chronic illness. When I was diagnosed with Marfan at 12, my father and brother were diagnosed around the same time. My parents were kind of the opposite of yours. They didn’t have a lot of information about Marfan either. My brother and I weren’t treated any differently. We were told not to tell anyone we had Marfan and my parents did not communicate with our schools. I guess they were afraid of us being treated differently. As a mother to a Marfan child I kind of try to be in the middle. I am not too over protective, but my daughter’s school is aware of her illness and if she wants to tell people she has Marfan, then that is fine with me.

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  4. It is amazing what we are labled does to us. I worry about my child too – we tell her she is great, and teachers see her as a “true leader” in PRE-K!!! And I worry that maybe she is not ready for kindergarten…its all so scary.

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  5. I never heard of Marfan. Glad you don’t feel weak anymore.

    Stopping by from Writer’s Workshop. Here’s ours: http://zemeks.blogspot.com/2010/10/fat-stutterer-writers-workshop.html

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  6. Maya, again I can’t thank you enough for sharing this. As a mom of a 10 year old with MFS I have ponderd these things long and hard. Desperaly trying to find a healthy balance.

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  7. Hi! I’m a good friend of Larie and Wyatt.. My husband Sergio has Marfan’s. He wasn’t dxed until he was 31. We have 4 boys..3 with Marfan’s. Your post is very good!! Thanks for the reminder..<3

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  8. I have Marfan Syndrome, but did not know it as a kid. Diagnosed at 26. But I had rheumatic fever and other cardiac problems as a kid that caused my doctor to restrict my activities (fortunate). My folks were not overly protective, and I pushed my activities to the limit with horses and bicycling. I met Maya when she was a young teen and learned of some of her many restrictions, specifically her parents not allowing her to ride a roller coaster. That really stuck in my head and made me glad that I had not been diagnosed until later as an adult. After my first aortic aneurysm and valve replacement, I finally sold my horse (dr’s orders), then about 15 years later I adopted two older horses — not for riding, just for loving — and have never regretted it.

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  9. Hey, Maya. I really liked your post. You have so many great thoughts! I’m glad you share them.

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  10. I don’t have Marfan’s, but I do have a CHD. My parents never emphasized it or tried to keep me (and my brother, who also has one) from doing anything, but there were definitely limits to our physical abilities. I remember running nearly the longest mile in gym and feeling so ashamed of what I could do, even pushing myself.

    I also used to hate my chest scar until I grew older and realized scars can be really, really interesting and attractive. I’m always evolving in my relationship to my body, but I’m proud that I accept my scar fully now.

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  11. Oh, and great post!

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  12. I hope things have gotten better since you were in school. Parents and teachers should be trained on how to handle teasing and bullying. I also believe that instead of concentrating of what chronically ill people cannot do, you should focus on what they can do, and hopefully show kids that we all have common ground, that we are all not so different.

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  13. Let’s add “inspiring” to your list as well. I know there have been many people who have found answers and guidance from your blog. You’re doing amazing things!

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  14. Maya- you story sounds so much like mine. My parents were told I’d be in a wheelchair by my teens, so you can imagine how overprotective they became. I also stood out in school and was teased and bullied constantly.

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  15. Hi Maya. I really liked your post. You have so many great thoughts. thanks for sharing this with us..

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