Meeting Laurian and John ScottJuly 07, 2009 by Victoria
Yesterday we had the honor of meeting Laurian and John Scott for breakfast in the French Quarter. Laurian and John are an unbelievably inspiring couple whom we greatly admire. Although this was our first meeting, I feel as if I already have a deep and personal friendship with Laurian. I began corresponding with her after stumbling upon The Olive Branch Fund, dedicated to finding a cure for pediatric motor neuron diseases such as SMA and Brown-Vialetto-Van Laere or BVVL -- the disease that took both of their sweet children, Thisbe and Noah. At the time, I was so, so afraid of what I will face after I lose Gwendolyn, of the black hole I may not be able to climb out of. Reading about all that Laurian and John have endured and seeing what they have since accomplished, gave me courage. My emails with Laurian have been an enormous help and mean so much to me. She has been so supportive, candid, and has shared wonderful ideas for entertaining Gwendolyn. They have sent Gwendolyn so many games and toys that their children loved and without fail, Gwendolyn always adores each one (the monkey game is from them).
While their darling little girl Thisbe was very sick, Laurian wrote the beautiful children's book, Thisbe's Promise. This is one of Gwendolyns favorite books and definitely one of mine. Thisbes Promise speaks to me about the intensity of a parents love for their child and I see the reflection of my bond with Gwendolyn in its pages. I came across Thisbes Promise shortly after Gwendolyns SMA diagnosis. At the time I was feeling uncertain and nervous and, although I cant fully explain why, Thisbes Promise gave me strength. Reading Thisbes Promise to Gwendolyn made me confident that Bill and I understand our daughter better than anyone else, better than any doctor or specialist, and that when I am unsure, all I have to do is look toward Gwendolyn and she will tell me what I need to know. This book has changed meanings for me as time has gone on. And now I also see the desire to always fight for my child, the endless possibilities of bringing fun experiences to Gwendolyn, the reminder that it is the simple gestures that bring the most joy to all children, the encouragement to continue to move forward... and the certainty that I will always be connected to my sweet daughter -- even after she is no longer in my arms.It was so special to meet Laurian and John in person. Gwendolyn was completely relaxed around them and she and Laurian were immediate buddies. Thank you guys for meeting up with us, for driving two extra hours to do so, and for being so amazing. It truly was an honor to meet you!!!