Rare Disease Day wrap up… a Mom on a mission is, well, a Mom.

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momWhat a week 🙂  Rare Disease Day/Week is one of those bittersweet kind of things for me.  I love all the publicity and support and collaboration that happens around this day, this global effort.  It’s a little daunting, though, to realize just how much work needs to be done.

The networking surrounding Rare Disease Day (RDD) is fantastic for me as I am blessed to know folks that started their path to rare disease research long before me, and they are able to guide me to resources I need for my mission.  I couldn’t attend the conference for RDD at the National Institutes for Health (NIH) this year, but it was wonderful to still be able to connect with the presenters and organizations that participated via email, phone, and good ol’ social media.  It was a hard choice not made lightly to miss being physically present at the conference, but I spent 2013 traveling all over the country finding folks to help our mission, and looking ahead at 2014 there needs to be more of that as well.  So at this point in the year, I had to find a different way to participate in the networking and advocacy so I could be what my number one job is: a full time mom 🙂

A couple of weeks ago I realized the big dilemma: my oldest son was scheduled to perform in the school play on the night before and the night of the RDD conference.  The organization President in me figured I could go to the Thursday show, sleep for a few hours, drive from my home near Philadelphia to Maryland the next morning, participate in the first half of the day, and drive back home to be at the show by 6pm (and run the bake table fundraiser we were  scheduled for at the show.)  I spent all last year doing stuff like that.  many times that works just fine… but this time, Michael had a special role in the play, and  it’s his last year at this school, and the Mom in me realized that after all the weather issues, and the sports schedules and the long work hours,  this time,  our family needed a little less stress and a lot more calm.

So what do you do when faced with the dilemma of doing your job well when you have two jobs and there is a choice you have to make? You compromise, sort of.  I made a choice to stay home… but  I also pulled up the agenda for the conference at 2 o’clock in the morning (who can sleep with such a dilemma?) and looked at who was presenting and who I needed to connect with.  I spent a few more hours that night/morning sending out emails to the folks I needed to talk to… and within a few days I was having phone conversations and email chats with people I had hoped to connect with.  I don’t know if it was divine intervention that led me to a particular group or the good karma from adjusting the priority on this one (I am guessing a bit of both!), but let me just say that you will have to stay tuned to find out just what is in store as a result of those connections 🙂

It isn’t always easy to make the right choices with work and family, nor is it easy meeting the different needs of each of our kids… but every once in a while I get it right… and this one I got perfectly right:  Being at Michael’s performance on opening night was magnificent!  The energy, the excitement, the nerves… it was incredible.  And then when he nailed it… when he sang like I have never heard him sing… and he brought chills down my spine and tears in my eyes… I knew… this was where I was supposed to be.  I wasn’t worried about train schedules, or traffic jams or weather.  I was 100% in the moment, with my family right by my side 🙂


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