A group of volunteers gathered in D.C., as they have for several years, anxious to meet with the staffers of Legislators from across the country, hoping to convince them to support CureSearch and appropriations specifically for Childhood Cancer research.
We wish we were just tourists, that we didn't know what we all know too well.
Then again, if we weren't there, the kids who are hooked up to chemo, getting scanned to check for relapse, making appointments with Endocrinologists and other specialists to help them with long term effects, wouldn't have a voice in Washington.
That's why it's important for us to show up, no matter how hard it is for us to tell our stories over and over again.
This year, the Buchers made it a family trip, extending the celebration of Fathers' Day so that G-man and Rick could have some special manly-man bonding over planes, trains, and dinosaurs courtesy of the Smithsonian museums.
Zoey traveled with me, mostly because she's still nursing.
She was not, I repeat, NOT a prop.
Ok, I might have mentioned to a few staffers that she'll never get to meet her oldest sister. Too much?
I was impressed by the unflinching support I received as a nursing mom. Kelly Hall, Senior Advisor to Allyson Schwartz (D-PA), encouraged me to use the Congresswoman's office after our meeting. "Just peek your head out to let us know when you're done," she said with a smile. They're very friendly to us, avid supporters of CureSearch's initiatives, incidentally. Later in the day, I just used my Bon-Bebe cover up and nursed as needed, even during meetings with the staffers from Congressman Murphy's office and Senator Casey's office. There are no breaks for breastfeeding when lobbying Congress! (And yes, I say this with the same tone as Tom Hanks when he delivers the line, "There's no crying in baseball!") There's just not enough time in the day.
We visited many impressive-looking offices, some I had seen last year during Reach the Day 2009, others I hadn't. Schlepping back and forth between buildings on the Senate side (like Hart and Russell) and the House side (like Longworth and Cannon) in 90+ degree heat with a stroller bordered on the absolute ridiculous (and made me more than a bit self-conscious as my CureSearch Reach the Day t-shirt absorbed the effects of the heat.) I was very grateful for the tunnels that connected the buildings on either side. (Visitors can only go through those that go under the Capitol Building with an escort that has clearance, in case you're wondering why we didn't use those.)
Of the austere offices with fine woodwork, moldings, trim, and (in some cases) fireplaces, the one I found most impressive was actually the most plain. Instead of pictures of himself posing with prominent political figures and other celebrities (as was the decor of choice for most legislators), Congressman Joe Sestak's walls were adorned with crayon drawings by children. My heart melted as I looked over the crooked, oblong circles, the stick figure families, the rainbows, and the smiley faces. Here is our champion, a father who watched his own daughter battle a brain tumor, who is continuing to fight for greater awareness in Washington and greater sensitivity to the needs of children battling life-threatening illness. He began the Pediatric Cancer Caucus. He fought hard to garner support for the Caroline Pryce Walker Conquer Childhood Cancer act.
And we could lose him.
Sestak defeated Senator Arlen Specter for the Democratic nomination for Senate this year. He's up against Republican Pat Toomey, who has already launched a series of campaign strikes, ads trying to label Sestak as a "Liberal," assuming that to be a dirty word right now.
I hope those crayon drawings find there way to the walls of an office in Hart or Russell in January. We could really use a guy like Sestak on the Senate side.
Meanwhile, I'm writing my letters to follow up on the meetings we had and to persist with establishing connections with the offices of the legislators who did not schedule meetings with our group.
I've provided my feedback to CureSearch, which is in the process of review (and hiring, as they've lost a few members in key personnel positions.) I've been invited to convene with small group to help next year's event grow and improve (which is something I hoped to be able to do since last year.)
Internally, I'm still healing a little bit from the experience. It's hard to see our small numbers during something that is supposed to be a "rally." It's hard to keep it together throughout the day while explaining over and over again what so many of us think is obvious. It's hard to be told that "things are tough this year in Washington when it comes to appropriations." It's hard not to want to shake the sense into the young twenty-something ivy-league staffers who seem unaffected (but most likely are not; they just have to listen to sob stories like us from different lobbies all day long and quickly develop their poker faces.)
It's hard to hear awful things from a senior staffer who should know better like, "Have you all gotten tested for the Onco-Gene yet? You really should."
Yes. He really said that. At the end of our meeting, as an aside. As if he was throwing us a helpful health tip rather than tearing our already broken hearts out of our chests to juggle them.
It didn't help that this happened to be the guy from Senator Arlen Specter's office with whom I battled back in 2008 over the CCCA (which Specter finally agreed to co-sponsor after I called him out in the Daily News, then never backed when it came to appropriations when he had the power to fund it, stating that he firmly believes that only the NIH should handle disease-related funding, even though he has supported appropriations for breast cancer research, even though he is a three-time Cancer survivor himself who might have an idea of how horrible it would be for a child to undergo treatments that are, in many cases, more toxic than those to which he was exposed.) Is it obvious that I'm still somewhat bitter about it? I'm thankful that Specter has consistently worked to increase NIH funding. He just has never gotten the fact that those increases in the NIH budget never got to the kids.
What helps me heal, is what always helps me through the toughest times.
Family.
Friends.
Faith.
Seeing a hugely-successful benefit with the bright faces of people who "get it" certainly helped, too. I am so grateful for Chris and Gina Polizzi and all of the generous people who made the BBQ for Baldies such a wonderful event, adding over $6K to St. Baldrick's team 46 Mommas Shave for the Brave's total. They'll never know just how much they helped restore my confidence and strength.
Back to the business of motherhood I go. I'm already late preparing dinner.
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