Saturday, March 19, 2011

Reflections on our trip to Congress

Earlier this month, Sarah and I woke up ridiculously early on Tuesday and began a fantastic, whirlwind journey to Washington DC to bring our story to those whose job is to represent us. Sarah and I went to tell her story, a story about a little girl without a care in the world. A girl who loves to dance, and sing, and play boardgames. A little girl like so many who just love life, love living, and who inspire smiles wherever they go. A little girl who woke up a year ago and found that the world isn't fair, and that serious illnesses aren't only for the elderly. A little girl with type 1 diabetes.

Wednesday morning we woke early and spent some time preparing for our first meetings with the American Diabetes Association. Sarah was so excited! We ate breakfast in our hotelroom (bowls of cereal from the pharmacy down the street) and wandered the shops in the hotel until it was FINALLY time to check in with the American Diabetes Association. Sarah and I checked in and were provided with a t-shirt, a lanyard, and an over the shoulder bag stuffed with paperwork.

Sarah went right to work, opening the bag and previewing the contents.

In the afternoon, the real work began, and we found ourselves in a conference center full of men, women, and children of all ages, all races, all sizes. Many had diabetes, either type 1 or type 2, others were in the healthcare profession, and others were there to honor a loved one. The speakers were inspiring, and simultaneously heart-wrenching. One fact stuck out to me above all the others.

A focus group at the capital surveyed our lawmakers and found that overall they do not see diabetes as a serious issue.

I ask myself, how is this even possible? Diabetes, in its various forms, takes a tremendous toll on families. It's an immensely costly disease, requiring constant and ongoing medical treatment, and when complications arise, much more.

The thing about diabetes which is similarly wonderful and terrible, is its invisibility. I know, and have known, a lot of people with diabetes in my life - and until my own daughter was struck with diabetes, I have to admit, I didn't think it was that serious either. My grandpa had diabetes. He always had a meter on his table, I was told he took insulin (I don't remember ever seeing this), and candy and sugary drinks were always present. To me it seemed a small part of his daily life. Now I am consumed with learning and managing Sarah's diabetes. I even had a dream last night that she took her insulin pump off to take a shower, and then couldn't find it. Have you ever had a nightmare that locks your jaw, tightens your muscles, and ultimately wakes you from sheer terror? I felt that, over a missing insulin pump. How crazy is that?

But far beyond my own experience is the stone cold facts about diabetes. Over 26 million children and adults in the US have diabetes - about 5% of these have type 1 diabetes, like Sarah. The cost in 2007 to treat diabetes related complications in the U.S. was over $2 billion!

So we went to Capitol Hill. We talked met in Senators Diane Feinstein's, Barbara Boxer, and Dan Lungren's offices and told our story. Sarah told Diane Feinstein's aide how she was "afraid she was going to die" when she was diagnosed (pretty much ripping my heart out). We walked to several other offices and dropped off material, taking a few moments at each to tell our story and explain why we were there. Representative Tom McClintock heard me speaking to his chief of staff, and came out to introduce himself and give me a few moments of his time. He even brought us into his office for a few pictures.

Though the day was tremendously rainy, nothing could dampen our spirits. We were on a mission!
It was an amazing journey and we met so many wonderful people, including Marianne, who writes a blog called, which is dedicated to strong women dealing with the challenges of diabetes. What an amazing role model for my little girl!
In closing, this was a remarkable experience. Sarah and I both had a wonderful time, and an opportunity to share with our representatives the seriousness of diabetes. Sarah and I both came away energized and ready to begin preparing for further advocacy in California. We registered for the ADA's annual walk and Sarah is planning a variety of fundraising opportunities. Please visit our Step-Out page and donate generously, or better yet - come with us! We'd love to have you join our team.