Donate

Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

Have you ever signed up for something you felt you were not quite qualified for, but went ahead and did it anyway? I have, and I’m preparing to do it again.”

Several years ago, when I first heard about Washington Days, I never imagined myself actively engaging with legislators.  For most of my life, I have found politics and governmental jargon beyond my scope of knowledge or interest.  For years I have blindly voted in each election, relying on my gut notion after months of redundant staged television ads and nail-biting debates.  I purposely avoid in-depth political discussions and prefer talking about mindless current events and weather.   Washington Days, I initially assumed, was specifically reserved for the members in our community who could convey sophisticated conversations, oozing with political brashness.  That all changed after I attended my first Washington Days in 2013.

“Oh boy, what did I get us into?!” kept echoing between my ears as I picked up our registration materials and headed to the first time attendee training.   I had so many questions, and was really hoping to leave feeling a lot more confident than I felt right then.  Cautiously, we entered the ballroom wearing our NHF lanyards.  Our names were printed in bold black letters with our hometown and state underneath on one side, and a small stack of matching business cards stashed in the plastic sleeve.  After a quick glance around, hoping to see a familiar face or two, we sat at the first open seats.  It was comforting to know we were not the only first timers.  Pens in hand, we did our best to soak up every word, making notes of important points and tips.  Despite the amount of information being discussed, I Morgan remained engaged for most of the training.  When we were addressed as constituents, a sense of importance and belonging amplified inside me.  As we sat there and listened, the nerves settled and I started to feel notably valuable in a patriotic sort of way.  By the conclusion of both the first time attendee and regular training sessions, my previous insecurities were thankfully replaced with a sense of determination and better understanding for the next day’s events.

Moms Blog_Destinee Early the next morning, with Morgan by my side, we joined four other constituents from our home state of New Hampshire and navigated our way to Capitol Hill.  As we made our way to the Russell Senate Office building, it was impossible to avoid being mesmerized by all the time-honored architecture and historical significance encompassing me.  Map and itinerary in hand, we began en route to Senator Kelly Ayotte’s office for hot coffee and donuts.  Although this particular type of meeting was somewhat less intimate than the remaining private appointments we had scheduled, it was a tremendous honor to be able to meet the Senator personally.  The setting allowed us to have a few minutes of her attention as she made her rounds, greeting each of her guests and taking formal pictures.  Throughout the day, the six of us did our best to explain pressing issues facing our community, each of us passionately adding a relatively personal flare to the same concerns at hand.

In the beginning, I found letting the more experienced constituents in our group lead the way, until the time felt right to engage in the dialog.  It was helpful that we already knew each other and our schedules permitted all of us to stick together for extra support and encouragement.  When it was her time, Morgan did an outstanding job delivering her own story, making me extremely proud to see her act so grown up and poised.   As the afternoon closed, and the day’s events resonated inside of me, I could not help but smile and appreciate how lucky we are to live in this amazing country where our voice can be heard no matter what your background is.

I’ve always been up for stimulating opportunities that can open my children’s lives up to new and rewarding experiences.   Impulsive by nature and with the mindset that things will find a way of working out for the best, I try not to let fear hold me back and practice positive paranoia.  One of the upsides to having a child with a bleeding disorder is that it has trained my family to overcoming fears and obstacles. This has carried over to things that once paralyzed us and held us back, creating new life lessons and unexpected character builders.  Over the years we’ve ended up in places and met people I would have never imagined.

Although I won’t be signing up for any riveting political debates anytime soon, I will continue my advocacy journey actively encouraging my children to do the same.  Soon I’ll enter those gleaming marble halls again. This time with both my daughters beside me, proudly representing our local hemophilia chapter and state, doing our best to tell Congress about the issues that affect us personally and the bleeding disorder community as a whole.

Destinee lives in New Hampshire with her husband, Ken, and twin daughters, Madison and Morgan (15).

__________________________________________________________________

*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.

 

 

 

Facebook Comments

Sign up for E-mails, Dateline Newsletter, and other ways to stay connected.