Tuesday, June 10, 2014

Tried and True Tuesday: To Blog or Not to Blog

Did you know that this entire mission was inspired into existence by a small group of kids across the globe who have never spoken a word and their parents whom most have never met one another? That just be simply "being" and "believing" together, they created the foundation for what would become this very nonprofit organization.?

Incredible when you lay it out like that, right?

I started blogging in 2009 after having found great solace in sharing Brayden's story on his CaringBridge page; where it still serves a the written story of his journey, and ours, with hydranencephaly. You can read it HERE

Essentially, writing became the greatest therapy.

When asked by Terri Mauro, About.com Children with Special Needs, to tell about my special needs parenting blog; this was my answer shortly after having jumped on the blogging trend:

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: 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 will develop a strong connection with... even if you never meet in person! Sometimes they're the closest people in your life.

This blog-stuff all started with the one mentioned above, "Small Portion of a Life's Journey" in mid-summer 2009. Up until just a moment ago, I thought it no longer existed on the web since transferring over the "relevant" posts to create this blog. Much to my surprise, a quick Google search discovered that it still very much exists through various other outlets. 

I forgot how  much I love the quote I had shared in the header:

"Hope is a state of mind, not of the world. 
Hope, in this deep and powerful sense, 
is not the same as joy that things are going well, 
or willingness to invest in enterprises that are obviously heading for success, 
but rather an ability to work for something because it is good." 
-Vaclav Havel

When I started blogging, I never realized the impact I could have with my written words. When I started, I never thought twice about who would read it and how they would feel about the information I had shared. I also did not realize, until this very moment, the impact my decision to delete the blog would have on others. Sifting through blogs that had shared my words, I now find the remnants of broken links or pages redirected to an empty blog url now taken over by some random name. 

if only I'd known that there really was an audience of support out there... 

Post courtesy of Riley's Smile on May 3, 2011: "From Small Portion of a Life’s Journey: Why I Haven’t Posted Regularly: “I still have in my possession an overflowing computer folder of information to share, but recently I’ve kept a huge secret that I have let e…” I share this because Ms. Harper deserves recognition for her amazing efforts and a strong future for her new Foundation, The Brayden Alexander Global Foundation for Hydranencephaly."

This very post started as a rambling about a year ago... discovered today as I am researching whether to continue blogging. From the original post, "I write what comes to mind as I go. I don't have a plan for what to write and I rarely will edit my words. Whatever goes on the blog, or on the paper, or IN the publication I'm working on is what comes out the first time (with minimum proofreading beyond spell-check)."

Somewhere along the line I think I started worrying too much over who was reading and how my writing would be interpreted... instead of blogging with a purpose, I began blogging to meet some unrealistic expectations that came out of nowhere. Without feedback, I started to feel like everything was going out to a nonexistent audience.

Add to that realization the fact that my little investigation this afternoon shows HUGE benefits to anyone with a business, for or non-profit, and I think I have found my answer to the above:

"To Blog or Not to Blog"

The final game-changer, since I was nearly 100% ready to pull the plug on the blog, was this from Martha Spelman, a branding and marketing consultant and expert in small business...

"Your blog is the “must-have element” of an effective and vibrant content marketing strategy.  A blog can provide much of the content that will filter into other formats: articles, ebooks, webinars, podcasts, videos, newsletters, social media channels, and more. Not too long ago, I was chatting with a marketing colleague, discussing social media, and she said, “The first place I look when I go to a website is the blog.”  Why? “Because it’s where I can really find out about a company – who they are, how they work, about their expertise and experience and frankly, whether I want to buy their products or services.”  As I’ve said previously, content you create – well-crafted and properly promoted —establishes credibility and builds trust."

So, the attention that needs to be given to our blog will begin.... and I have to say I'm now happy to dive back in, reenergized and reminded of the reasons why this all began! Be on the lookout for some big changes and while you're waiting, check out our new and improved website by clicking HERE

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