A Teacher

We have started telling our friends and co-workers about the upcoming surgery.  We didnt tell too many people when we were first told that we needed to start talking to the surgeon and making decisions.  Its hard to tell people that you are having surgery when you dont have any information like when, where, and specifics about why and what the surgery is.  And so, we told our immediate family and that's it.

Now, we still dont have a firm date but we know that it is sometime between next week and December 2.  Seriously, that's all we know.  At this point, we are on the surgery calendar for December 2 but the genetics doc and surgeon are working to move that date closer.  And so, we wait for that phone call or email. 

In the meantime, we are preparing.  Dentist visits to check for gum infections.  Flu shots to prevent the family from getting sick during recovery.  Not RSVPing to any invitations because we have no idea if we can go to events. 

But most of all, I find myself teaching.  My friends, family, co-workers.  Everyone I tell about the surgery it seems.  Heart surgery - everyone gets that part of it.  But throw in a term like "Marfan Syndrome" and the glossy look spreads across their eyes because they have no idea what that is.  I think I have developed a pretty good "elevator speech" for describing the condition. 

Sometimes I get tired of explaining it.  Sometimes I just want them to already know about it and not ask me to tell them that my daughter has it too.  But most of the time, I am thrilled that I have a chance to teach one more person what Marfan Syndrome is and what to look for if they think someone in their family could have the condition.  Because the more people we teach about Marfan Syndrome, the more lives can be saved by management of the condition. 

And that is my job as the wife and mother of Marfan patients.  So teach I will.