06 March 2013

March On The Hill: Day 1

When I went to bed last night, March On The Hill (MOH) was still planned.  When I woke up this morning, it had been cancelled.  By the late morning, it was on again.  What's the deal?  Bad Weather! Boo!

The Cystic Fibrosis Foundation had expected about 60 people from around the US to fly in to DC to participate on the annual March On The Hill event today.  However, expectations of up to 12 inches of snow in the area cancelled flights as well as the congressional session today.  Realizing that we wouldn't likely be able to meet with our respective Representatives and Sentaors, the CFF March on the Hill team decided to cancel the event.

However, questions lingered...what about the 15 people already in town for MOH?  And what happens if the expected "12 inches of snow" turns into nothing but "ice-cold rain"?  The answer:  You pull together to make the best of it and you call it "Mini March" (as in mini-March on the Hill.)

Mary Dwight and Eric Chamberlin (see standing in picture) from the CFF's Public Policy department met with those of us in town this afternoon to train us on all things "advocacy" in the event we can meet with our Congressman's office should the federal government continue on as planned tomorrow.  (The congressional session has already let out for the week due to the weather.  Whether we will meet with staff or not is still to be determined.  But I expect we will have a chance to speak with someone from most of the offices we had hoped to meet with.  Unfortunately, we won't get the face-to-face Congressional appointment we were hoping for).

It's late and I need to head to bed so I don't have time to write what I learned today.  But it was wonderful to learn better about how Congress works, what we need from the federal government and how to tell our story effectively.  I am so thankful Bennett has such a wonderful organization advocating on his behalf.

Of course my greatest delight from attending any Cystic Fibrosis Foundation event is meeting the people.  I love it when I get to meet families who can speak CF-jargon and immediately understand the feelings involved with a child whose health is deteriorating, a child who just learned how to swallow pills or a doctor whom is very beloved.

Cystic Fibrosis is an honest disease.  So, I often find honest people behind the disease - honesty with regards to gross things (such as mucus plugs and CF digestive issues), honesty in needing community, honesty in the hope of a cure.  It feels good to not have to say anything to someone and know they just get you in this area of your life.

I look forward to another day with these folks.  I'm very proud of the organization that is helping our son.  And I appreciate so much the opportunity to be a part of it.   I hope that tomorrow I can use the training we were given today.  But, most importantly, I hope tomorrow brings laughter and honesty with a group of families going through raising a child with CF just like us.

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