I’ve been trying to think of one word that describes the SBA conference 2016 that I just recently attended out in Minnesota. One word that can best characterize my feelings toward all the sessions, people and the crucial roles they each of them play in the bigger picture we call â€śSpina Bifidaâ€ť and I havenâ€™t been able to. I believe the SBAâ€™s conference theme, â€śBeyond all limitsâ€ť says it all and says a lot. So much!
It’s hard for me to even gather my thoughts to write this. However, I know that from experiences is how we help others and each of us with Spina Bifida has been given a great responsibility to teach others, without us even realizing that we are. From our lives, doctors learn how to push boundaries and take risk, to help us reach our full potential. Medical professionals work tirelessly since the day we are born, trying to make our lives as rich as possible. And most importantly our families, since day one have been on our side battling every single battle, so we can have a chance to win the war. I canâ€™t express enough the importance my family had and still has in my life. I canâ€™t thank them enough for the long nights, stressful days and sacrifices they have made just so I can be here.Â There is so much power in that. I truly believe that being born with spina bifida has strengthen my family in every way. It has made us into critical thinkers who always look for solutions. Spina Bifida gave us an attitude of never holding back, always moving forward at all cost and giving up is not an option. Some phrases used extensively in my family.
If the conference did anything to me, it made me think back on my life pretty hard. Each session I attended had something that I could easily relate to, but a couple stood out from the rest. The Power of Story: A Dramatization of lives of adults with spina bifida by Diane Glass, was one that hit home. Made me see how our lives can shape not only us, but everyone around us with the power of our stories. It taught me how I can use my story to reach a wider and broader audience. A goal that I will be fine tuning in the next coming months.
Another one that stood out was Brothers and Sisters Speak out. This session truly moved me, hearing brothers and sisters talk about their sibling with spina bifida brought me back to the days of when my brothers and I played, fought and shared smiles. I couldnâ€™t leave the room without telling the board of siblings, how important their role is in development of a child with spina bifida. If it wasnâ€™t for my little brothers, I would not know where I would be today. I would be a totally different person.
Donâ€™t get me wrong, every session at the SBA Conference was unbelievable. The gathering and organization of all the sessions, speakers and everything that went into it had to be a tremendous undertaking.Â I forever will be thankful to everyone involved, and will make the SBA Conference a place to be in the future. I want to thank Karen Allen and my Spina Bifida Chapter for letting me represent Central Florida. Also, for given me the opportunity to better myself so I can help others along my path.
P.S. – I will be developing a small video from the recordings I took so stay tuned for that in a couple days. As you guys know, I love the creative part!