I OWN CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS

Disclaimer: This is not a happy post. This is a pissed off mom who needs to vent. If you don't want to read it, DON'T! Normally I don't bring any of this crap into my personal blog.... but since tomorrow has been marketed as Congenital Diaphragmatic Hernia Awareness Day, which should be something positive, something good.... but unfortunately it has gone terribly wrong-it pisses me off and I need to vent about it. Sooooo, I am just going to apologize in advance to anyone I may offend or upset. I know there are some amazing, wonderful CDH mommies who are supporting this day and the good it SHOULD represent, and I respect that-I really do. I just hate how tainted it has all become.

Background to those who may not understand:

I have a son who was born with CDH. It was undiagnosed until after he was born, although it probably should have been picked up on one of the many ultrasounds I had. Because it wasn't diagnosed prenatally we were not prepared. We had him at a small county hospital who was not prepared for him. We had no idea what to expect or the severity of this defect. My doctor gave me a bunch of misinformation about CDH and what caused it after he was born. My own DOCTOR, who was in charge of my babys care while I was pregnant, had no idea and very little actual knowledge about this defect that affects 1600 babies in the US EVERY YEAR.... We relied on the little bits of information we were given by doctors and nurses and started to have to make life altering decisions without any real knowledge of what the hell we were doing. We were forced on to a rollercoaster ride where all we could do was hold on and pray.... and in the end it crashed and we had to pull our baby boy off of life support.

2 years ago (shortly after Gabe passed away) I was actively involved in 2 CDH groups. I was depressed and hurt over loosing Gabe and wanted support and wanted to get to know others who had walked a similar path. I did not know any of the previous drama that had gone on before with the CDH community, and I didn't want to know.

One of the hot topics that is constantly discussed within the CDH community is how little is known about CDH....how few people know about it. If more AWARENESS was raised for CDH could benefit everyone affected by CDH, so that maybe someday better treatments and more information would be available to those who need it.

When one of the groups started to plan a CDH Awareness Day, I thought it was a great idea! What a wonderful day to unite our efforts to raise AWARENESS to the public. What an amazing outlet to use to work towards something I was so passionate about.... but I had no idea!

I had no idea how screwed up this day would become. I had no idea how counterproductive their campaign would turn out to be. So here is the irony of this Congenital Diaphragmatic Hernia AWARENESS Day.... It is an AWARENESS day (which by definition should mean that the entire purpose is to spread AWARENESS to all) that is open by invite only. No other groups or organizations may participate unless they report to and have permission from the president of Breath of Hope Inc. But the best part (said with tons of sarcasm) is that this AWARENESS day campaign is being used to TRADEMARK Congenital Diaphragmatic Hernia AWARENESS!!!!! Not just the day itself, but the phrase Congenital Diaphragmatic Hernia AWARENESS! This means that no other group, organization, or person may use this phrase without asking for permission. WTF???!!!!! How the hell does that further the goal of spreading CDH AWARENESS, if it is trademarked so that others may not use it?! I think the president of Breath of Hope has made it clear what her true motives are by doing this.... not to help CDH families but to hurt other groups that she does not personally get along with. This is sad. This is all very very pathetic, and sad.

I've got one more thing I would like to say before I end this pissed off post.....

I OWN CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS! MY SON WHO DIED DUE TO THIS HORRIBLE DEFECT OWNS CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS! MY DAUGHTER WHO WILL NEVER PLAY WITH HER BROTHER OWNS CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS! MY HUSBAND WHO WILL NEVER WATCH A PATRIOTS GAME OR THROW A FOOTBALL TO HIS SON, OWNS CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS! TO ALL THE PEOPLE WHO HAVE FOUGHT AGAINST THIS HORRIBLE DEFECT, WHOSE CHILDREN/GRANDCHILDREN/FRIENDS CHILDREN WHO HAVE DIED FROM CDH OR STILL FIGHT TO OVERCOME CDH..... WE ALL OWN CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS. WE MAY NOT HAVE PAID TO TRADEMARK IT BUT WE PAID FOR IT IN BLOOD AND TEARS!