Musings of a Marfan Mom

If I Didn’t Have Marfan Syndrome…


Usually I’m pretty rah-rah-rah about Marfan. I love the Marfamily, I think Marfan has brought some positives to my life, you know the drill. But these past couple of weeks, a few hard things have happened within our community. I am, once again, reminded of some of the unfairness of this syndrome.

So, today I’m indulging in a little (rarely played) game of “what if I didn’t have Marfan?”

If I didn’t have Marfan syndrome, I’d be a runner. I wouldn’t have my long legs, but my brother runs and he’s not all that tall, so I think it’d be doable. I’ve always admired runners, plus you don’t need to lift weights or do a million crunches to run. I wouldn’t run in the cold though. I’d either have a treadmill or use one at a gym. Some people might think running in place is boring, but I like both TV and music, so I think either of those would occupy me well enough while I worked out.

If I didn’t have Marfan syndrome, I’d have more kids and I’d try to have water births, or at least drug-free in the hospital.

If I didn’t have Marfan syndrome, then Baby J wouldn’t have Marfan either. That means I wouldn’t have an oxygen tank, cpap machine, or pulse oximeter in my bedroom. I wouldn’t have had to check J’s oxygen levels yesterday when he started screaming out of nowhere to make sure his lung hadn’t collapsed (which can happen spontaneously with Marfan). We’d also have a lot more time during the week to play because we wouldn’t have his therapy or specialist appointments.

If I didn’t have Marfan syndrome, I’d be a music therapist. It wouldn’t have mattered that music therapists are self-employed and therefore have to get private insurance because I wouldn’t have a pre-existing condition that makes getting private insurance impossible. So, I wouldn’t have had to make the decision to switch majors in college to something more Marfan-friendly. It’s not that I didn’t enjoy my major and subsequent career path, mind you, but if Marfan hadn’t existed I probably wouldn’t have left music.

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. I know my son would say ” If I didn’t have Marfan Syndrome I would play football and be a Marine when I grow up!”


  2. Couldn’t you be a music therapist in a school? Wouldn’t your medical be covered then?

    I know you are going through some rare changes but if you could make just 1 of those dreams come true, wouldn’t it be worth a shot?


    marfmom Reply:

    I personally don’t know of a school that employs a music therapist full time, which is what would be needed in order to get benefits. Some hospitals are starting to, but even the therapist I met with from one of the local hospitals had to supplement by doing some contracting. Once the kids are older though, maybe that will be something I go back to school for, since I have another degree to fall back on should we ever not be able to get benefits through Mark’s work for some reason/he goes out of a job.


    Michelle @Special Mom Space Reply:

    Well hopefully things will change in the school and/or hospital system. This way you can further pursue one of your dreams :-)


  3. If I didnt have Marfan, I would run track. If I didn’t have Marfan, my mom would most likely still be alive. If I didn’t have Marfan, I wouldn’t be in pain all the time. If I didn’t have Marfan, my spine would be straighter, I wouldn’t be hunched over, and I would be much more confident.

    Don’t get me wrong, there are ways that Marfan has blessed my life, but lately it hasn’t been my best friend!


  4. If I didn’t have Marfan Syndrome, I wouldn’t be so slow (in motion), “lazy” (I get tired very easily), pensive and insecure due to my body’s imperfections. I would have studied medicine or architecture and stayed in my home town in Italy and not lived abroad for 13 years. I would not have had a reason to not-accept my condition and escape my reality for so many years. My son wouldn’t have Marfan Syndrome, 2 minor and 2 major operations and some more likely in the future
    I find it difficult at times, but I’m pretty determined to achieve the stuff I want no matter what! :-)


  5. If I didn’t have marfan, my father wouldn’t either. And I’d have grown up with a dad instead of faded photographs.

    If I didn’t have marfan I wouldn’t have put my body through hell to prevent my sons from having it. And they probably wouldn’t have been born three months early and would be healthy.

    But, if I didn’t have marfan I wouldn’t be me. And I like me.


  6. If I didn’t have Ehlers Danlos Syndrome I would still be barrel racing, and just plain old horseback riding like I used to. I’d be able to garden without agony, bend over and know I was going to be able to get back up, and walk around a shopping center without needing to sit down or pass out. I wouldn’t be in a doctors office or at PT 3x a week. I’d go surfing, and join the Military and serve my Country like I always wished to. And maybe most importantly, I wouldn’t have to constantly be worried that I am a disappointment and burden to my family.


  7. If I didn’t have Marfan I wouldn’t be in pain so often. If I didn’t have Marfan I wouldn’t have dropped out of college and would have been a Marine Biologist. If I didn’t have Marfan my daughters wouldn’t have it either and I wouldn’t spend countless days at their bedside on a hospital. If I didn’t have Marfan Nikki could have been a professional figure skater and Meli could have won martial art tournaments all over the world. The reality is that I do have Marfan and that I hurt both physically and emotionally because my girls will never be what they dream because I chose to take the risk of passing them Marfan. But if I didn’t have Marfan I would probably not be so thankful for every day of life, for being able to hike on a sunny day even if I will hurt for the next three and I wouldn’t have met such wonderful people as the one’s I have met over the years.


  8. If I didn’t have ADHD, I’d have graduated with a masters by now, and been better at making friends.

    If kekito didn’t have Autism, he’d be easier sometimes, or I wouldn’t be AS stressed about his future, or therapy, or have as many fights and arguments with my husband.

    But like you, I don’t let myself go down that road much, because it’s not what IS. And as it IS, I focus more often on the amazing things that I would not have w/o autism/ADHD. But it’s a trade off. And somedays you can’t help but play what if!!!!!


  9. I didn’t know you wanted to be a music therapist. So did I! If I didn’t have Marfan, my husband could be his own boss or take a job without worrying about healthcare. If I didn’t have Marfan I could drive my kids fun places. If I didn’t have Marfan I could dance more strenuously. If I didn’t have Marfan, maybe I wouldn’t be so tired. If I didn’t have Marfan I wouldn’t have to go to the doctor so often or worry about finding specialists.


  10. i know how you feel about being a constant disappointment to family and friends.


  11. If I didn’t have Marfan, I would do more with my kids and wouldn’t be so “lazy”.. I try so hard but I am just so tired ALL the time. As I sit here right now, I am soo tired. How can I change this??

    If I didn’t have Marfan, then neither would my brother, who died 2 months ago at age 38 from it.

    If I didn’t have Marfan, then neither would my son, who is now 5 years old. My heart aches because I know the hardships he will experience because of this syndrome. He doesn’t yet..

    If I didn’t have Marfan, then the two people in my family without the disease, my mom and sister, wouldn’t think that I am tired all the time because I am lazy.. They assume that because I am alive that my life if the same as theirs. They have energy so why don’t I?? I never have. They feel so distant from me.

    If I didn’t have Marfan, I wouldn’t be sitting here now, in tears.. Wondering when I too will die..


  12. I don’t like to think about the what ifs and I’m just sitting here praying I don’t die from having my first child n hopeing he doesnt have to live with this condition I’m the odd one out in my family no one else has marphansyndrome except me so I’m kinda hopeing it was a freak thing n my baby won’t have it n I’ll live thru it to get to hold him thank you for giving me hope i needed I can’t imagine having to give up on my baby when no one gave up on me


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