Musings of a Marfan Mom

If I Didn’t Have Marfan Syndrome…Part 2


A good friend and college roommate of mine always said a 24 hour pity party from time to time can be really healthy, but never longer than that. So, it’s time to look at the other side of yesterday’s hypothetical situation.

If I didn’t have Marfan syndrome, I’d be pretty short. There would be no one in our home to reach the top cabinets, so we’d have to buy step stools.

If I didn’t have Marfan syndrome, I probably wouldn’t be a mom right now. I wouldn’t have had any time constraints on having kids, so we probably would have waited longer. I can’t imagine not having my two little guys!!!

If I didn’t have Marfan syndrome, I’d most likely still be shy. I wouldn’t have needed to stick up for myself or learn to speak in public about MFS from an early age.

If I didn’t have Marfan syndrome, I wouldn’t have met some of the most amazing people ever. I’d be missing an entire family unit!

If I didn’t have Marfan syndrome, I wouldn’t have this blog. That means I wouldn’t have “met” most of you, which is sad as thinking about not meeting the Marfamily.

If I didn’t have Marfan syndrome I, as Sarah commented yesterday, “wouldn’t be me. And I like me.”

For better and for worse, I am who I am thanks to Marfan. It isn’t the sole thing that defines me, but it’s definitely a big part of what makes me, me.

So, I’ll ask again: If you didn’t have Marfan (or insert whatever it is you might have), what might be different for you?

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  1. If I didn’t have Marfan, I would know you!


  2. Thought of another one – if I didn’t have Marfan, I might not know what it was like to be bullied and different. I’m glad I know so I can be sensitive to other people.


  3. If I didn’t have Marfan Syndrome, I wouldn’t know how to stand up for myself either. I wouldn’t be as strong of a woman as I am today either. What doesn’t kill you, makes you stronger.


  4. If I didn’t have marfan I wouldn’t recognize myself in the mirror as so many of my features are Marf features.
    If I didn’t have marfan I might have wasted too much time on useless relationships as nothing scares off timid and weak suitors like a chronic condition.
    If I didn’t have marfan I might not have pushed myself so hard to succeed in my chosen career, nor received honors for writing about marfan.
    If I didn’t have marfan I wouldn’t have met the dozens of people who safeguarded my life and the lives of my sons and who overwhelmed me with kindness and support.
    If I didn’t have marfan, my family would not have been forged in adversity.
    And if I didn’t have marfan, I might never have learned my own strength. And that would have been tragic.


  5. if I didn’t have MArfan Syndrome I wouldn’t be able to see the performers at a concert, above the rest of the crowd, I would have to get up a lot more often to get things instead of just reaching out with my long arms, or out of the car to pay motorway tolls…
    If I didn’t have Marfan Syndrome I’d be short and nobody would comment on my lovely long legs; I wouldn’t have my long slender hands and feet that I just love about myself.
    I would have to do sports and oh my… I get tired even at the thought of that! :-)


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