As many of you know, I was raised by a dad who served in the reserves and National Guard and an uncle who served in WWII, so, service runs deep in my veins. I just finished reading David Bellavia’s latest book, “Remember the Ramrods: An Army Brotherhood in War and Peace” about his life post-Iraq and receiving the Medal of Honor as the only living recipient of the armed forces who fought in Iraq. He so eloquently and poignantly describes how he deals with adversity in life and celebrates it too.
I have been at war against Sturge-Weber since October 11, 1986. Many of you have been on that battlefront for too many more years than I have. You had to figure out how to dodge and recover from the flying bullets (seizures, glaucoma, disability) without the Band of Brothers we have built through the SWF. I am in awe! We all should be so proud of what we have survived, and accomplished; improved by our service to others. Granted, on different frontlines mind you depending on what injuries you’ve had to repair and live with as you navigate SWS! David’s book got me thinking about the ghosts we live with as they relate to SWS and birthmarks. We come from all walks of life around the world and are influenced by our families, culture, and so much more. I can relate to David because his Italian family laughs in the face of adversity! He keeps his ghosts of regrets and the ill-fated deaths of his brothers in a box. The ghosts do come out though and will inevitably float in and out taking us back in time where we were on that SWS frontline to show up and battle another fight. Victim or Victor? It’s always our call and only we know if the decision is right. Identify the challenge. Strategize solutions. Decide. Execute.
Wallowing is not an option and kills more than opportunity!
I think about Dr. Ben Carson and wonder if he remembers sweet Christian Sarver who passed away on his OR table during a hemispherectomy. Dr. Carson’s frontline was critical to giving renewed life to our severely seizure-flying SWS kids. Does Dr. Jonathan Pevsner know how his research on that frontline of our war renewed our hope for a better future? So many of you have taken your personal pain and channeled it into a lean and mean fighting machine!
How many fundraisers have you held, and millions of dollars raised to provide a huge arsenal of weapons to win our war? I’m proud to be in your Band of Brothers. We each handle our ghosts our own way just as David and I do, or maybe more head-on!
I do hope though our Band of Brothers inspires y’all to never give up. You may choose to leave our frontline and join another high-profile organization or give funding elsewhere, but the ghosts will follow. United, as the Band of Brothers we have become, when you stumble there are those to help you back up and when the ghosts of regret and sadness float into your world, we help banish them.
We are Leaders of a Legacy! Thank you for being in this fight with me and I can’t wait to see y’all online and at the Int'l Family Conference next summer. See our latest Branching Out for the location announcement!
With love, faith, and hope,
CEO and Founder