Musings of a Marfan Mom

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?

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?