"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.
5 comments:
Hi Jen and Miss Sofie. I too want to disappear from the cdh world but like you we have been given not only tradgedy but a gift and that is to share our story to the world and bring to light this fatal birth defect. You are right our babies DO deserve a normal life....however I realize this may never be possible. I know that we just simple have to live in the moment not knowing how long we will have together. It is so important for us to share and give hope to expectant parents. Thinking of you guys and also praying everyday.
I also was upset about that article but you know what? That guy has NO clue about cdh. So many have brought the "bad" side of cdh to the light meaning drama. It is so sad to me that they have lost focus on what is really important.
~Terri and Ava
http://avaslifewithcdh.blogspot.com
Such a great post, Jen! You are right, CDH picked you..but it picked you for a reason. I cannot believe how passionate you are about everything that you do. As a mother myself, (to a toddler now, geesh!) I understand the definition of "passion" like I never have before. I can see how passionate you are about motherhood, Sofie, and CDH. I am amazed everytime I open your blog and read about another idea that you've had or an idea of others that you are so strongly involved in. The blog in general, Sofies infospot, the letters for CDH...heck, even the research you've done for this post! You do everything 100% and it is commendable. I know it is cliche but God only gives you what you can handle and you have definitely taken a horrible and nasty defect and made the best of it. Keep up the good work.
I never knew what CDH was until I started blogging. Now I follow a few kiddo's and am just amazed with the stregnth in the parents and the babies.
I would be apalled as well. I think that unless you fully understand what these little fighters go through, maybe the journalist should keep their writing to themselves.
Goodluck in getting the word out. Remember, someone always listens to the squeaky wheel.
Jen, I am so sorry. What a jerk. I posted a response to his article as well. Unbelievable. I follow your blog through meeting little Kinley and think promoting awareness of CDH IS critical to increasing funding and such to ensure less children will die from this. You are right to be fired up!!!
Jen,
Don't let this upset you too much because guess what - I have heard from too many of those professionals in the trenches who say this is critical!
Keeping my focus on the prize in the end - which would be higher survival rates as the result of others aware and financial support to medical research and support for CDH!
So many people don't see the big picture.
We got State Proclamations, we still are working on that. We have a Resolution in Committee - we are working on that. We will write bills for Medical Research for CDH and things related to - and we will continue - this just started this not long ago - look at how far it has come in such a short period of time!
Giving credit to all the families just like yours!
Elizabeth
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