It has been 7 years since I first wrote to welcome my family, friends, and the community to my personal blog. At the time my motivation was to share our journey, Dawne and mine, down Discovery Road as we searched for answers as to why and how I had been born with a very rare congenital syndrome called Klippel-Trenaunay Syndrome. As I wrote my mind drifted and my heart pounded as I met others who also were born rare. I found my voice. I found a family that I did not know I had, a worldwide community that too lived each day wrestling with questions, seeking treatments, and at times grieving the loss of companions with rare syndromes. We immediately volunteered our time and energies to help with Support Conferences, sharing experiences in email and other social networking Support Groups, and pursuing medical institutions and research organizations and articles. We traveled to meet with future companions who were born with the same or associates rare syndromes as mine, parents and caregivers, and siblings. It wasn’t lost on us that we had been on this journey since 1997, 13 years prior to me starting to journal about our travels, things learned, things still to learn, and most importantly the human connections that truly can’t be explained in paragraphs, rather it takes being with us as we meet, share, cry, and dream about easier days and nights.
This last week an ever-changing world caught up to us, we were dropped from a private Facebook group that we had participated in, if you include it’s legacy start-up presence, since around 1997. It was a wake up call about the wild and crazy cultural dynamics that seem to be infecting the entire world these days. It also spoke to our dreams and the balance of our lives. There truly is a time for everything under the sun. Today, it’s our time to revitalize and recommit to the things that make us happy, that feed our passions and bring constructive experiences and warm hugs. To that end, what started as a rookie project – Seen, Yet Not heard – is now several very real and personal endeavors. These are me. These are my Renaissance. This new age journal is my electronic book, a scrapbook of writings, photos, references, and tidbits so that when I get to old to recall I have something to remind me of how wonderful it is to be human, to pursue dreams of individual sovereignty while standing with those I love, respect, and learned from.
I’m leaving my original writings in place as much as these still make sense in light of decades of experiences. I’m adding new material. I’m building a larger network of digital data and links to netter navigate my constant distractions and passions. So with that said, Welcome to my revitalization. Next up is my original Welcome. Hopefully it will shed light on who I was and who I am.