Monthly Archives: March 2014

Beauty can be seen best by the blind.

Recently my family and the Foundation we co-founded (Curing Retinal Blindness Foundation) were honored with the “Spirit Award” at the Miss Philadelphia pageant, a component of the Miss America Organization.  The award was given to our family because we “embody the very Spirit of Philadelphia and all our great, beloved city stands for”.

Miss_Philadelphia_2014-4911My family was so proud… but if you look at the picture of us with a few crown holders, my oldest son was perhaps the proudest of all.  To folks that don’t know us, this picture looks like a 14 year old young man is so proud to be standing with beautiful young women… but the beauty he is proud to stand with is the best kind of beauty that everyone seems to talk about but little achieve: inner beauty.

My 14 year old blind son, as well as his 10 year old blind brother, cannot see facial features or details of perfect hairdo’s, clothes or figures… not even brilliant tiaras on the heads of beauty queens.  What they can see is a person’s true features… through mannerisms, voice inflections, and other cues, my boys have a window into the souls of the rest of us.

From the time my guys were very little, they have been able to sense if a person is warm or cold-hearted, they can sense joyful hearts and sorrowful ones, and they know when to have their guard up with some folks and let it down with others.  And they can do this in the first minutes of meeting and engaging with someone.

Sometimes I feel my guys have the advantage over us sighted people in that they make no judgement on outer beauty, just what’s on the inside… something so many preach to do but rarely can deliver.

We are so proud to be honored by the Miss Philadelphia/Miss America organization as they are teaching young women that outer looks are not what defines beauty:  rather, it is the radiance of important soulful qualities like compassion, kindheartedness, generosity and confidence that render a person beautiful.  When your soul radiates true beauty, the world, blind and sighted, sees a beautiful person.

Pictured above is my Family (Smedley) with Miss Philadelphia 2013 (Francesca Ruscio), Miss Philadelphia 2014 (Diamond Edmonds) and Miss Pennsylvania (Annie Rosellini) at the Miss Philadelphia 2014 pageant.

Smedley Family on NBC10 Philadelphia news!

 

 

 

 

 

 

nbc10 front

 

Our family had the wonderful opportunity to sit down with NBC10 news broadcaster and former Philadelphia Eagles player Vai Sikahema to chat about our Curing Retinal Blindness mission and our big event, Cocktails for the Cure coming up on Friday, 3/21!  See the interview by clicking here.

You can view the event details and order tickets by clicking here.
all with vai

during interview

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

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 🙂