Thursday, July 28, 2011

Hope for the Future


I think one of the greatest fantasies when you become a parent is dreaming of what your children will become as adults.  As babies, they are a blank canvas on which there are limitless opportunities to paint a future.  Will they be smart?  Maybe even super-smart...or possibly a genius? Will they be someone famous? Will they be a good parent?  Will they be happy? We have all met (and even sometimes been) the parents for whom their children can do no wrong.  Whose children are brilliant and infallible and stunning and talented-  All at once and...oh by the way: sooner than everyone else's kid. Right?  You've met them.  Maybe you've even been them.  But it can't be helped.  We all want our children to have happy, successful lives.  I think you'd have to be really messed up or not have a pulse to not want the best for your children.  To not want them to suffer or struggle or fail.

When Charles and I first received Elijah's diagnosis of Down Syndrome, it was this aspect that I grieved about most.  I feared that the sky was not the limit for my youngest son.  I feared that the best we could hope for for him was a life as a potential grocery bagger, who lived at home with us and had no one to love (romantically).  Now...I don't think that grocery bagger is the worst possible job a person could hold.  I mean, let's face it, there are lots of people who don't even have a job at all, so I'm not saying it as if it is the bottom of the barrel, worst case scenario.  What I am saying is, you don't dream about that as the goal job for your child when they are young.  You dream: Firefighter. Ballerina. Astronaut. (If such a thing will continue to exist..) and Brain Surgeon. To name a few.

My perspective has changed over the last year. I have gotten to know a lot of families who have a child, teenager or adult with Down syndrome.  I have seen many stories and videos online of successful, beat-the-odds individuals who also happen to have an extra chromosome.  There are professional musicians, actors, teachers, mentors, inspirational speakers, models, gold medalists, and many, many more.  The real truth is that we, just like everyone, have no idea what can or will become of our youngest son (or our eldest son either, for that matter).  What is truly most important is whether or not he is happy.  A Mom that I have a great deal of respect for, Gail Williamson, has an adult son with Down syndrome.  What struck me the most, was a quote I read by Gail, paraphrased as: Out of all my kids, Blair (who has Ds) is the most content with his life.  I think of this often.  That is saying a LOT.

I want my son(s) to be happy-that is probably the most important thing a person can be.  But, I also want them both to have Opportunity.  This is the reason that the very first charity (benefiting Down syndrome) that I took part in is the Down syndrome Research and Treatment Foundation (also known as DSRTF).  DSRTF is making scientific breakthroughs in discovering what is impacting the cognition problems in individuals with Down syndrome.  It is thrilling work.  The DSRTF has a campaign called Plus 15.  The plus15 campaign funds research at major research centers, including Johns Hopkins Medical Center, Stanford University, University of California, San Diego, and University of Arizona, into how to improve the memory, learning, and speech of people with Down syndrome.  Research scientists working on these improvements tell us they are within reach.  I have volunteered my time in helping to throw a fundraising event to raise money for these worthy efforts.  Coming up on Saturday, August 27th is our annual fundraising event: Research Rocks! If you are local to the Los Angeles area, please consider buying a ticket to attend the event.  The money is going to benefit a lot of people and the event is a great evening out, with food, drinks, a Q & A with the scientists, and dancing!  Attendance is not possible for many of you reading this (and actually, this year, it will not even be possible for me, as the 27th is the evening I will be celebrating my 40th year of life. Yikes!) However, we are throwing a raffle, which includes prizes like the ipad 2, a digital camera and a Barnes and Noble gift card.  For the price of a cup of coffee and a doughnut, you could buy a raffle ticket to benefit these researchers' work and possibly take home a great prize.  You do not need to be local or present to win-- We ship anywhere!! (And HAVE!!)  Please consider clicking on this link: to purchase raffle tickets.  Your donations are greatly appreciated and could help to realize the dream and hope for the future of our children with Down syndrome! (We also hold a wonderful silent auction.  If you, or anyone you know has a business or product they would be willing to donate in order to be raffled off, please contact me via email at:

I hope my enthusiasm and belief in the work that DSRTF is doing didn't come off as a giant sales pitch.  I have hope for Elijah's future regardless of scientific breakthroughs, but the potential for my child to gain an improvement in his cognition, memory and speech could open up a world filled with even more Opportunity.  As a parent, I can't help but want that.  Like anyone, I want the world for my boys. 

I'll leave you with this recent video of Elijah... (don't forget to turn off the music before you play the video so you can hear Elijah's laughter.)


Becca said...

Okay, that boy is Beyond. Precious. :-) My thoughts for the future have definitely changed - all I want for Samantha is for her to be happy, no matter what she ends up doing, but it still sounds weird to me to say she *won't* be able to do something. Sure, there are endless possibilities, but they are not actually limitless. She will not be a surgeon, y'know? So I have learned to accept that there *are* actually limits, but there are still SO many more wonderful options open to her.

Jenny said...

Loved this post...Did my heart good to read this today! And I agree with Becca's comment as well...Our kids have endless amounts of options, and a simpler life doesn't mean a worse life. Loved the quote by Gail, thank you for sharing :)

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