Monday, December 9, 2013

You've Got a Story to Share!

The best way to raise awareness is to share the real lives of the individuals living it. GHF has made it easy to share the journey of your little bee by either sharing their life journey, their "bee-ography" of course, or a smaller introduction through a "Meet the Bees" customized collage. Details are below:

Bee-ography Submissions can be sent to Ali via email. This is simply a template to help guide you along the storytelling trail, feel free to share as much or as little as you'd like. We have found that these stories tend to truly pull at the heartstrings of those reading and really are most effective at enlightening individuals to the truly amazing lives these little bees live. There is no better way to raise awareness! And rest assured that your story will be edited for ease of flow, so even those who question their ability to write will find the published version to be a beautiful tribute to their child's amazing journey...

1)      Describe your pregnancy?  Was child diagnosed in utero? Any complications with pregnancy?  Any suspensions from doctors as to what may have caused the diagnosis?  What information did you get from doctor?

2)      What type of support did you get from doctors, family, friends, social  workers, etc….

3)      After you child was born, what type of surgeries and medical interventions were needed and at what age did the surgeries occur?

4)      What impact has your child had on your life?

5)      What type of information do you wish you would’ve had after diagnosis?

6)      What activities does your child enjoy?  Do they like certain toys, eating certain foods, comfort are they comforted with certain people.

7)      Any other pertinent information you would like to include?  Include as many pictures as you would like. 

If you're not nearly as long-winded, as myself, answer a few short questions and see it come alive in a collage introducing your bee to our audience. Brings their photos to life with the things they love best... another amazing tool for raising awareness of the possibilities that exist for these children! Details are below:

SHARE YOUR BEE WITH THE WORLD, send your submissions to Katie via email.

 To submit your bee for our upcoming "Meet the Bees" weekly posts on the Global Hydranencephaly Foundation's Facebook page, please provide us with some basic information. The "Meet the Bees" post will include any child that has (or had at one point) received the diagnosis of hydranencephaly. We want to share your bee with the world, and, coincidentally, change the perception of hydranencephaly! We would love to include any and all angel bees as well! 

 -Child's name. Please let us know how you would like your child's name to appear on the collage. Nickname? Perfect! Anyway YOU would like it listed is fine with us! 
-Picture or pictures. Please include one picture of your bee to have featured. If you would like to send additional pictures, we will try our best to include them in the collage. 
-Child's birthdate and primary diagnosis. If you aren't comfortable sharing this information with the public, it is okay. If you would like to include any additional diagnoses we will try our best to include any additional information in the collage. Also, if you have an angel bee we can include their angelversary if you wish
-Child's favorite activity or toy. Again, include as many toys or activities you wish. What does your child enjoy doing? Any special memories? 
-Favorite Color. This will be the color the collage is based after. In general, we will have blue for boys, pink for girls, or a bee theme. If you wish to have a special theme for your child, please request it! 
-Child's Webpage. If your child has a CaringBridge, Blog, or webpage you would like to include please give us the link. We will incorporate it into the collage in some way.
-Anything else to make the collage your bee's. Feel like we're missing something? We will try to incorporate anything into the collage to make it perfect for your bee! 

In addition, please make sure you sign the photo/video release form, found at our family resource network on Facebook, to allow us to post the collage on the Global Hydranencephaly Foundation's sites and blog. We look forward to sharing your bee with the world!

"We are lonesome animals. 
We spend all of our life trying to be less lonesome. 
One of our ancient methods is to tell a story 
begging the listener to say-and to feel- 
‘Yes, that is the way it is, or at least that is the way I feel it.’ You’re not as alone as you thought." 

~John Steinbeck

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