On Saturday, I acknowledged an anniversary of sorts. One year ago, on December 4th, 2009, I received a phone call revealing my amniocentesis results were positive for Down Syndrome. I literally thought that life as I knew it was over. I woke up every morning for quite some time, cracked just one eye open and hoped that someone would say to me, "Don't worry. It was all just a bad dream. This didn't just happen." Instead, when I managed to pull myself out of bed, I started trying to find other people who have been in my shoes. They didn't say, "I'm so sorry." They said, "CONGRATULATIONS!!! It will be a better journey than you could ever imagine." I somehow began to feel early on, that everything would be alright and that maybe something good would come out of this." Turns out, that is true on many levels: First of all, if nothing else came out of this, I got Elijah.
But, I did get something else. I got a more personal understanding of what a life's challenge might entail...and how it moves people to act, to Do...to Improve. A few months ago, I volunteered to be a part of a committee that puts together an annual fundraiser to benefit an organization called Down Syndrome Research and Treatment Foundation (DSRTF) and it turns out that the benefit evening was held this year, on December 4th. I couldn't help but feel some irony in that. The event from a committee-member's perspective went VERY well. A lot of companies and a lot of people really stepped up to make a commitment for a worthy cause. (Extra special thank yous go out to Sandra at Royal Events, Julie and Ernae at Blue Cupcake, and Rocky and Mike from Rock Star Entertainment!) I got a chance to "play" with the floral decor and had a blast making the semi-empty residence that it was housed in, feel cozy. Putting aside my "event mode", as a new Mommy of a baby with Down syndrome, I was blown away. Because of my son's condition, I am getting to be part of a generation where science is making groundbreaking progress. Never before in the history of Down syndrome, have these kind of miraculous discoveries been unearthed. As one of the world's leading researchers on Down Syndrome, Dr. Lynn Nadel said, "Down Syndrome is finally cool." And Cool is good. Cool is important in the world of science. Because Cool gets you noticed. And Noticed means that other researchers are willing to band with you in the name of a major breakthrough and pharmaceutical companies suddenly see dollar signs and are willing to take you seriously and begin the courtship, accordingly. The very short, layman's understanding of it all (which is all I have!) is that the treatments that are already working in their mouse models, significantly improve cognition. There are also potential treatments in the works that will be able to freeze and reverse the memory damage that occurs in Alzheimer's patients. (Something like 99% of all individuals with Down Syndrome, end up with early onset Alzheimer's.) The event for the DSRTF was called "One eXtra reason to live, love and hope" and I can tell you how perfectly suited that name really is. I have a good amount of hope that one day my son will not have to worry about Alzheimer's disease. I have a good amount of hope that there will be options and possibilities for improving cognition for my son and others like him. I was really blessed to be a small part of this event, especially so, on the anniversary of the scariest news of my life. I was surrounded by my parents, my best friend, and a room full of other parents who know my story, because theirs is nearly the same. It was quite a juxtaposition from last year.
Some of the "Beautiful Minds" involved with DSRTF:
From left to right: Dr. Michael Harpold (CSO of DSRTF), Dr. William Mobley (UC San Diego), Dr. Ahmad Salehi (Stanford School of Medicine)
Na'eem Salaam (DSRTF), Dr. William Mobley, Dr. Lynn Nadel (University of Arizona)
And a little bit of my hard work for the event:
Even though the Peonies and Lilies didn't open as they should have, it looked beautiful...
It was a chalk-full weekend where I didn't get much of a break, but it was the kind of weekend that leaves you feeling pretty high on life. I'm ready to crash but still need to do one more feeding (the dream feed, for those of you who have been there) with Elijah before I can completely crash.
But, I'll leave you with this: (Thanks to my photographer brother-in-law, who fit us into his busy schedule. Thanks, Jake!)