March for Babies

I'm happy to say that myself and a number of other Omphalocele moms are walking in the Fort Worth March for Babies event by the March of Dimes.

Our team is called Team Omphalocele, and we're walking to spread awareness.  

To help support our walk, we have t-shirts for sale through booster:
Buy T-shirts here!

We also have a team page that can be visited, and my personal page, where secure donations can be made.  Feel free to share all with family and friends! 

Team Omphalocele team page

My personal March for Babies page

Evan says "Thank You!" 

 

How much information is too much?

In the wake of the terrible and well-documented hoax involving Brad Paisley and his wife and a stranger who stole pictures of a real child with cancer... (Read more here: http://news.yahoo.com/blogs/nightline-fix-abc-news/elaborate-hoax-lures-brad-paisley-kimberly-williams-paisley-153350254.html?vp=1 ) 

I feel the need to question- How much information should I share about my child online, accessible to everyone?  It is a parent's responsibility to protect our children, but at the same time, some of us desperately want to share the beautiful story of their lives. We want to create awareness, to show mothers who are going through a terrible time that there is hope and beauty and joy that can come from their journey. We want to show that there are enormous obstacles, but in order to overcome our fear, it helps to take away the unknown factor. 

To help our children and to help families everywhere and to help others understand, we sometimes share photos that are heart-wrenching and show the worst moments. 

This isn't shared for sympathy, but because we know that if we share these images, it might help someone down the road, if only by taking away the fear of the unknown. 

You all have likely seen the images of children with cancer or birth defects on Facebook, with the message "Like= $1" or "Like if you have a heart, ignore if you don't".  

These images are most likely part of the public domain, released as part of a news story.  And someone totally unrelated to the child in question is simply using the image to gain likes on their page. 

Beyond that, there are the people that use these images for far more sinister purposes, such as the story above. 

Now, I actually have sympathy for the people who feel the need to use such images to garner attention and public sympathy.  They are sad individuals that really need help, and this is a way they are reaching out. 

However, it doesn't excuse the fact that they are fabricating a person using someone else's very real pain. 

Things like this hurt the cause of so many parents who are only trying to bring awareness to the world. To make the world a better place for their children. 

I've often witnessed mothers being told that they're lying to gain sympathy, that they're making too much fuss out of nothing.

We see this happen a lot. Sometimes because people are more prone to think that stuff like this doesn't happen to real people. So they say we're lying. 

It hurts. 

So here is my statement in regards to all posts and pictures on my blog: 

These images are mine. These words are mine. If you use any part of my blog without my permission, you will be subject to what laws apply. 

In addition to that, if I find ANYONE profiting either monetarily or emotionally from images of my son's pain, I will not let it go until I track you down, personally.  

Consider this statement my copyright. 

Omphalocele awareness

We're proud to announce that January 31st is Omphalocele Awareness Day!

Our group, the Mothers of Omphaloceles are using all our social networks to spread the word in order to spread awareness of this condition. We want to let other mothers that are being diagnosed now know that there is hope, and support for them. And also spread awareness to the general public that although a child being born with an Omphalocele has hope, it is important to support the family because the recovery isn't as easy and straight-forward as some might think.

This video is a compilation of pictures of Omphalocele children and adults. Please share!


http://m.youtube.com/#/watch?feature=share&list=FLss-1w6DO-csRBR0kuGepYQ&v=MiDHmKrtvXY&desktop_uri=%2Fwatch%3Fv%3DMiDHmKrtvXY%26feature%3Dshare%26list%3DFLss-1w6DO-csRBR0kuGepYQ