Tag: Ronald McDonald House

When I started this blog just about two and a half years ago, it was to serve as therapy for me.  It took a while before I even started linking my posts to facebook.  I didn’t pay much attention to the stats of the blog, except to occasionally marvel at the random countries my blog was being read.

This week while searching the year that was, I happened to notice that this little blog has cleared over 100,000 views!

Stunned.  Amazed.  Humbled.  Grateful.

I think of the people who have reached out to me through this blog.  People looking for an ear, or a point in the right direction.  I think about the newly diagnosed who have come my way a few times, and have been relieved to learn everything can be ok with Cowden’s Syndrome.

I think of the blogs I follow, of people with and without Cowden’s, and all I have learned.  Most especially that WE are not alone.

I think that spirit of companionship, whether it comes from a country across the world, or a city nearby is a factor in what motivates me to keep writing.

But, mostly blogging is my therapy.  My free therapist.  The computer is my listener.  Where I can air my thoughts and ideas, and worries and hopes and dreams.  And then I can edit myself into the positive mindset necessary to press on.  This blog keeps me away from the negativity and the despair that can sometimes accompany this life.

And yesterday as I recapped “The year that everything broke…”  I was reminded of all the blessings that came our way in 2014.  And despite the lows, there always seemed to be someone, somewhere, with some random act of kindness, who was able to help us turn things around.  For all of these people – and they know who they are – accept my gratitude, OUR gratitude.  For really this is our story.

Although I am not much a fan of “New Year’s Resolutions,” or proclaiming that things will be drastically different in the minute it takes to pass from 11:59 PM on December 31st to January 1 at 12:00 AM…  I wanted to highlight some of the positive things that have gone on for us in 2014.

We began last year, much as we will begin this year, preparing for Rare Disease Day.  In February there was an assembly at my school.  We gave out ribbons to all the students.  Meghan and another family, two dear boys who had been affected by a different rare disease spoke.  They opened some eyes that day.

And in the midst of that assembly Meghan met Borough President Oddo.  The two struck up conversation like old friends.  Meghan immediately respected and admired him, and he has become a mentor of sorts.  They are in Email contact, she has been to Borough Hall to visit a few times.  He was really the impetus behind Meghan believing there is no limit to the difference she can make in the world.  He continues to encourage her as she plans Beating Cowden’s First “Jeans for Rare Genes” fundraiser on February 15, 2015.  I feel so fortunate for her to see such a positive role model who changes the lives of so many just by being himself.

We had a fundraiser last year as well, and raised several thousand dollars which was donated to The Global Genes Project.  Satisfaction.  “For the babies who really need it, Mom.”

In February also in the midst of what was almost a train wreck around a bad snowstorm and a carefully orchestrated thyroidectomy, I frantically called in desperation to get us into NYC the night before the surgery.  Ultimately we ended up with the greatest gift, as we were privileged to spend a few hours at Ronald McDonald House in NYC.   The facility, the employees, the organization – all phenomenal.  Our Guardian Angels were active that day!

Meghan received some awards this year that made us very proud.  In the Spring she was selected as “Staten Islander of the Week.”  At graduation, she received the “Portrait of Courage” award.  In the summer she received a nomination from the Global Genes Project for their “Teen Advocacy Award.” On my birthday she received a “Kid of Achievement” award from the Staten Island Children’s Museum.   She was starting to get the idea that SHE can make a difference.

In July the Borough President’s office arranged for Meghan to throw out the first pitch at a Staten Island Yankee game.  And this girl who had never thrown a ball before received a crash course from some great friends.  Not only was the pitch a success, but the number of friends and relatives who joined us at the game, wearing “I love someone with Cowden’s Syndrome” T-shirts, was beyond touching.  We are loved.

August saw the overcoming of a lifelong fear of roller coasters, for both of us.

And in the fall we saw the first glimmer of hope that Meghan’s dream for a denim ribbon necklace was steps from being realized.  Exciting times all around.

We capped the year off at the Stone House at Clove Lakes, with another family with a different rare disease, lighting their Christmas Tree to help raise awareness of rare and genetic diseases.  Meghan’s intermediate school chorus came out on that chilly night to support the cause.

So Cowden’s Syndrome, while it creates more than it’s fair share of heartache and obstacles, also creates opportunity when we look for it.

Just like we notch off and remember each surgery, and the milestone of overcoming the recovery, we also acknowledge, enjoy, and savor the positive milestones.

We remember that “everyone has something.”  We are grateful for the blessings in our lives.  No one’s life is perfect, and far too often we all suffer from the belief that someone else’s “grass is greener.”

May each day hold for you enough positives to counteract the negatives, and the ability to look for the good in all situations, people and places.

That is my wish for my family and friends near and far, not just for the new year – but for every day of your lives.