I saw this today...
"SENATE RESOLUTION 204--DESIGNATING MARCH 31, 2010, AS ``NATIONAL CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS DAY'' -- (Senate - June 24, 2009)"
This resolution was submitted by Senator Vitter from Louisiana yesterday and was referred to the Committee on the Judiciary. I knew it was in the works, but to actually read it in the Congressional Record was exciting. Kudos to those working on this (who shall remain nameless here, unless they reveal themselves)! You can read the full resolution in the Congressional Record
here. Let's hope it passes! You can keep an eye on S.RES.204
here, and I'll post a link somewhere in the sidebar on the blog.
I'm disappointed that my excitement about this resolution was overshadowed by my anger after reading a thoughtless post on a website called Irregular Times, which carries the tagline "News unfit for print".
During an online search for this resolution in the Congressional Record, I came across an article titled, "
No Time for Equality, Congress Has a Hernia" on irregulartimes.com. Of course it caught my attention, so I read on. Being a democrat with left-of-center ideals myself, I had no qualms until I reached the last paragraph, in which the author randomly picked a seemingly frivolous thing to belittle - CDH.
My blood is still boiling.
Every day I look at Sofie and realize how lucky we are to have her here with us. But if I were to be very honest, some of those days, I want to put CDH behind us. I want her to get on with her normal life and not be the poster child for CDH. I feel like we've served our time, and we are entitled to move on.
And just when I think maybe I should be less active in the fight against CDH and maybe not so involved with CDH Awareness, so Sofie can just be a normal kid, something about this monstrous defect drags us back in. She has another recurrence, or I read of another parent losing their innocent child. These things make me realize it's my obligatory responsibility, not my choice, to advocate for families affected by CDH. I didn't pick CDH; it picked me.
As I said earlier, my blood is still boiling. But I'm not angry at the author of the article. I can't help it that people don't adequately research what they write about. It just makes them look stupid. I'm angry because of all the relatively unimportant things the author may have considered to pit against the cause in this article, CDH stood out as egregiously unimportant. That makes me angry.
For parents that have watched their child fight CDH, who realize that victory isn't usually an easy road, and for parents that have watched their child lose the fight, who have held their dying baby in their arms, I'm angry. How can so many people NOT know of something so horrific as CDH?
So to this author, I'm thankful for the burst of hot air that reignited my passion to fight against CDH and for the families affected by it.