Name of Blog or Site
Small Portion of a Life's Journey
Address of Blog or Site
hydranjourney.blogspot.comHow Long It's Been Online
Since mid-2009
Why I Started
My son was diagnosed with hydranencephaly, a rare neurological condition deemed terminal by "medical professionals". I was blessed in meeting others online that gave me a glimmer of hope to fight for my 'lil man and after receiving many comments in regards to what the texts said when people would "google" the diagnosis, I set out on a plight to inform as many as I can about the true nature of this condition. Although the prognosis is scary, every moment is a blessing. I find comfort in reading about every aspect of this condition, from a medical perspective and meeting with other parents who have experience.
How I Do It
I blog at least once a week, but am trying to get better about it. Although I am a mommy to three, my youngest having hydranencephaly, I keep it pretty general in terms of my feelings as a parent, details of the condition, knowledge I have found in regards to this and similar conditions....since I am at peace with finding more and more about facing this condition, I want to share it with as many as I can in the hopes that somewhere along the way someone will read it and know that there is hope when most of the time the diagnosis is given with a death-sentence. There is light in the dark, there are miracles in every moment...
I am fairly new to the blogging world and am still trying to figure it out myself. I love to write, and blogging definitely helps me to get my thoughts out there...it is just a plus that I have been fortunate enough to network with people and help a few along the way.
Advice
- Knowledge is power, the more you learn and share, the better!
- be prepared for anything...some people live with the motto "ignorance is bliss" and have their own opinions to share
- know that the people you connect with you develop a strong connection with, even if you never meet in person...sometimes they're the closest people in your life
