Sunday, March 27, 2011

Just Like Summer Camp

Our first year at conference we were able to attend as a family, David, Cooper and I. We were a bit apprehensive, nervous to meet the other families, yet wanting to learn every angle and possibility of what we could do for our son. That first conference was like jumping into uncharted waters feet first surrounded by lifeguards at the ready. We are eternally grateful for support and insight provided by NTSAD staff, parents, and presenters. It was overwhelming to say the least, but more like learning a foreign language though emersion, actually visiting the foreign country rather than taking the 16 week course from an instructor who's never walked the streets. Still, I am enlightened everyday by NTSAD family checking in on each other, sending words of encouragement, and sharing information. 
NTSAD Family Conference 2009
Boston MA

Last year we did not plan on going to conference at all. It had only been 6 months since Cooper passed away, and we couldn't bear the thought of attending without him. I knew I would be a mess with every hug, touch or smile and the commemoration ceremony, unfathomable. I was afraid to fall apart in front of everyone, afraid I wouldn't know what to do with myself. Though the day before conference I quite literally felt knots in my stomach knowing that I may regret missing out completely. We mustered together a last minute flight to Florida making it possible for me to attend one of the four momentous days. As feared, I did fall apart, however; I was not alone. I was engulfed by a mutual love and understanding that made it more than okay. I was so glad to have been there even if only for 24 hours. No regrets. 

NTSAD Family Conference 2010
St. Petersburg FL

Needless to say I'm hooked, I'm in. Come Thursday I will be Boston bound for the the annual NTSAD family conference; anxious to hug old friends and connect with new ones, to celebrate the lives our children and remember our angels. Here, friends easily pick up where they left off as if there is no time or distance between them, forever tied together through experiences. Just like summer camp, only we are all too aware of time. It ticks by with each new diagnosis and is marked with every pair of wings, our allied diseases both progressive and fatal. It has been said many times that this is a club no one every wants to be a part of, yet we're all so thankful it's here. This year I am eager to hear news of research advancements, clinging to the hope that time can soon be redefined. No longer a sponge soaked newbie or stumbling through the thick fog of grief, ready for conference to unfold.


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