I might get a little touchy-feely and there may be some triggers in this post. I apologize in advance.
Blogging and, eventually, Twitter have been a small blessing in my life. When Klaw was first diagnosed with VLCAD deficiency, I made the very dumb mistake of using Dr. Google to find out more about VLCADD.
D. U. M. B.
I read lots of stuff. Lots of clinical stuff that didn't mean a whole lot to me but there was one key point that stuck out to me. In fact, all my postpartum brain could comprehend from everything I read was that Klaw would not live past 6 months. Sounds pretty severe, huh? Well, the reason for this is that the information about VLCADD (especially online!) is so incredibly limited that a lot of the published studies are centered around the post-mortem studies that led to the "finding" of fatty-acid oxidation disorders.
My postpartum brain got stuck on the worst possible scenario.
There was, however, one tiny shining light online amidst the clinical negativity.
I finally found one blog...ONE BLOG...about a toddler with VLCAD deficiency who was doing just fine (Landon's Place). That gave me hope and hope is an incredibly powerful thing when you are facing a life long disorder with your child. That one blog gave me the courage to look for more blogs. I needed to see babies, toddlers, children, adults living with VLCAD deficiency and doing fine.
I found what I was looking for and more, but it took a lot of effort. Once things got settled with Klaw and his health, I knew I wanted to make it easier for other parents. This helped me develop a side-road for my blog. A secondary purpose that's, in my opinion, even more important than chronicling the various thoughts & ideas that come into my head.
I found more blogs about fatty-acid oxidation disorders. I found blogs about mitochondrial disorders. I found real people living with these disorders daily. Yes, there is plenty of sadness to go around in this group but there is so much hope. These parents openly share their struggles, their findings, and their joys with the rest of us...if we are lucky enough to find them. There's rarely a set way to treat these various disorders, so parents are often the first line in sharing new information, new trials, and new treatments with others. Finding these families is like finally seeing a lighthouse when you are lost at sea. Hope.
Finding hope through blogging & Twitter connections is the single greatest thing about social media.
How have you used social media like Twitter, Facebook, or blogging to connect with people?
Waxing philosophical & other stuff
Prompt 13: What 1 aspect of blogging and social media is your favorite? Least favorite?
