Tuesday, May 25, 2010

On the Hill

The American Heart / American Stroke Association along with the Pediatric Stroke Network and CHASA (the parents support/information/advocacy group we belong to) sponsored a briefing on Capitol Hill today. As many of you know my only jobs prior to working for Lily and Imogene were in politics, so I jumped at the invitation to CHASA parents to attend. I went with my friend Erica, who lives just a mile from us, whose 6 year old daughter is also RHCP. Admitedly, my expectations were low. I remember these sessions being advertised when I was working in the Senate, and they were almost always attended for the most part by interns and low-level staffers. Erica and I also wondered if it would just be parents! We were wrong! For starters, the meeting took place in the new US Capitol Visitors' Center. It's a gorgeous building built underneath the ground in the open space between the Capitol and the Supreme Court. The meeting was well-attended by staff and there were even some media there. The "panel" included the chief of pediatric neurology at Nationwide Children's Hospital, Dr. Steve Roach(http://www.nationwidechildrens.org/neurology-team) -he also was the lead author on a 50 page study on pediatric stroke that you can read at http://www.newsroom.heart.org/index.php?s=43&item=470.  The next speaker was a board member of CHASA - mom to a 3 year old who had a stroke in-utero and has hemiplegia. Then was a 12 year old stroke survivior, also with right hemiplegia, who has spoken on Capitol Hill 4 times since she was 8 years old. I would have sworn this girl was in college. She was very well spoken, almost too grown-up - the way she was dressed and the way she spoke. The final speaker was the mother of a stroke survivor with hemiplegia who has started her own advocacy group. I really admire her for the gumption to do that - and to devote her time to that in additon to all that goes into having a child with cp/hemiplegia. She was just really angry at son's doctors for not figuring it out, and not listening to her concerns. I cannot imagine what that would have been like - especially if you believe, as she does, that those 19 months before his diagnosis were costly in his habilitation. We were so lucky to get such an earnest and quick response from Dr. Baldrate and Dr. McClintock. I imagine we're lucky, but I also think bashing doctors isn't exactly the way to get people to hear your message about pediatric stroke awareness. So at the end of the question and answer I felt compelled to share just two sentences about our experience and thank people like our pediatrician and neurologists like Dr. Roche. I just felt like people there needed to hear that some of us got the best, and quickest diagnosis we could have, and are still dealing with all that goes into dealing with a child with hemiplegia.
So anyway, I wouldn't say I learned anything ground-breaking about stroke or hemiplegia. I didn't know that more children have strokes than have brain tumors. Yet of all the millions of dollars spent on pediatric brain tumor research, only a single percentage of that is spent on pediatric stroke research. Dr. Roach told me afterwards that when he began writing a book in the 80's on pediatric stroke that most of his colleagues actually questioned who would need to read it. Certainly, times have changed, but more awareness is certainly needed. He made an interesting point about the difference an adult who survives a stroke at age 65, and a child who survives one as an infant. That adult may only deal with the resulting disabilities for an average of 10-15 more years. That child is looking at more than 65 years of disability. (Kind of reminded me of the mom at therapy, upon learning why IBS was in therapy - "OH YOU"LL be coming here for a long time huh?" gee, thanks lady.)
There's a lot more that I thought about today more than really learned. I couldn't really grasp how I got there. It felt sort of out-of-body. How did I end up at a pediatric stroke briefing on Capitol Hill? How am I the mom standing up talking about my daughter who has cerebral palsy? Seriously, whose life is this? It's my life. I'm so blessed by this amazing baby who is such a doll, and was giving out tons of kisses today - who gave Miss Patty (Maggie's mom) a high five with her right hand! Who is so tickled to see her reflection in the rearview mirror while she's face-forward in the car that she screams da-da-da-da (her version of baby I think.)  And her sister who loves her to pieces. That sister, who makes me laugh every single day. In a way, perhaps this is just where I should end up. The CHASA board member, upon hearing that I'd worked in politics, asked me if I'd be willing to work with CHASA on the lobbying/political aspects of what they are trying to do. It sounds really daunting, but I'd love to be able to take my former work-life and combine it with my current work-life. As PT Susan said, the best kind of job is the kind you can put your heart into.

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