The least I can say is that the Tay Sachs and Related Disease Family Conference was eye-opening, and as I process through all I saw and experienced and learned, most likely I will say it was life changing. But today I am so tired and emotionally drained that nothing is settled. I knew that meeting 17 new angel babies would be an experience not to be taken lightly, but one can't imagine until you have soaked it all into your soul.
I must first thank Sarah Mattingly for standing strong throughout the conference. She shot alongside me every step of the way. I am encouraging her to start her own foundation on the East Coast.
I again salute Conner's Way Foundation for their monetary support. This foundation has fully funded the work we accomplished at the conference, and that is no small thing. Conner's mom Desiree also scheduled all the shoots and made sure all the releases were signed, which made the days flow so beautifully. Sherri, Dylan's mom and founder of DJ's Foundation for Tay Sach's, was also amazing. Both Sherri and Desiree are talented shooters, and I so look forward to them sending me photos of myself with the incredible families of the conference. I foresee these two moms not only helping fund research and conferences but also recording these precious lives in meaningful and lasting ways. I picture both Conner and Dylan here today. Sarah and I hope that the legacy we are helping build for other families will always be thought of as a tribute to these little boys.
I think that the conference's biggest surprise, of which there were many, was the fact that Tay Sachs can have late onset and affect adults. I also didn't realize how many families come to the conference after the loss of their children, some as many as 22 years later. The related diseases were many and they seem to run similar courses and are all genetic in origin. All those affected have to be the offspring of two carriers of the particular gene for that disease. I also hadn't realized that there is juvenile onset of Tay Sachs. Just the numbers of people attending seemed more than I would have imagined when I knew in advance that there would be approximately 17 children with the diseases attending. Grandparents, nurses, sibs, family friends and aunts and uncles all were represented.
It was such a pleasure to get to see Elise again. She always brings her extended family and a nurse and her husband that are such a part of Elise's life. I hope they know how moved I am by their unconditional love, and that I feel a small part of Elise's entourage. Maybe I shouldn't presume to think I am included, but now that they have been with me for a third time, I bet they know that I am just going to be with them whenever possible. They are also special to me since they don't seem to mind my offbeat approach to life. When confused or a bit sorrowful by all that was around me, I would look to find Laurie, her parents or Linny and just get their amazing advice and support.
Over the next weeks I will be sharing all of the children of the conference, but we have to wait a bit for prints and scans to be available. To any attendee who might stumble upon this blog, I send my heartfelt thanks for your welcoming ways and I send love as you travel a path of love and hope.
I am sharing a couple of photos of my pals Miana and Emily from their recent visit to my studio. Now you can all see why it was such a special morning.
I close tired and weary to the bone, In love and peace, Lynette