Thursday, October 1, 2009
"We don't see things as they are, we see them as we are."~ Anais Nin
Today we move from Childhood Cancer Awareness Month to National Down syndrome Awareness Month.Thus my new button to the right.If you click on it, it takes you to the National Down syndrome Society home page where you can link to tons of great info and resources.Last year I attempted to participate in the third annual Get it Down: "31 for 21",31 days in October and 21 for well,that extra little chromosome.The campaign is simple in concept but far reaching with possibility.Your asked to commit to post on your blog, at least once a day, for the thirty-one days of October. You can write about Down syndrome or not. You can have a family member or friend with Down syndrome, or not. Just choose to do it and just do it. Raise awareness of Down syndrome by taking part. It's that simple.Tricia over at Unringing the Bell is the brain child behind this great blog experience and an experience it is for sure.It is really incredible to go to all the blogs participating and check in on their posts.Some are heavy.Some are funny.Some deal with statistics. While others deal with something far beyond numbers and percentages.Last year I started out strong with the best of intentions.As the month progressed it was obvious something was up with Miss Zoey so I became a bit of a slacker and then bam ... Zoey was diagnosed and that was the end of "31 for 21".But actually,in reality, Zoey's diagnosis IS part of Down syndrome awareness in and of itself.Our children with Down syndrome are at a significantly higher risk of developing leukemia.A fact that the general population may not be aware of.A fact I so wish that myself,or my child,didn't have first hand knowledge of.But sadly and tragically, it is the case.I think for me, to commit to another "31 for 21" is a bit lofty of a expectation for me this year.But I will try and slip in a few things from time to time.Really,after all,the day to day life with Miss Zoey is Down syndrome awareness in it's very own way.It is my fervent hope and deepest desire that during this month,just one person,just one,sees Down syndrome as not an affliction,a thing to pity or fear or turn from.That through the gift of these beautiful children in our lives, that one person changes their perception of what it means to to have Down syndrome and perhaps even envy's us .. just a bit.
The picture I posted is of a beautiful necklace that I received for my birthday.Okay,not really received ... I bought it for myself.How could I resist.It came from my boyfriend.Well,again,not my boyfriend but from our first blog friend ever, who just happens to be our inspiration and who we have adopted the"Slow and Steady Wins the Race",motto.See,I didn't even know what blogging was till Zoey was almost a year.The Down syndrome thing just seemed so inconsequential to us all when Zoey was born.Not that we didn't care but seriously,we embraced it pre-birth and once the medical hard stuff hit,that became our paramount concern.To this day,it still is.The rest will come.As Sam proves daily to us.Rae and I both found ourselves sucker punched after seeing our medically fragile children finally reach heart surgery,only to be nailed with Infantile Spasms.A diagnosis which has left both of our children wearing the battle scars of that fight.But Sam remains our beacon of hope and when I see him sitting on a baseball field,little legs crossed in the dirt,I smile because I so hope Zoey will one day do the same.That's magic to me.Another thing Rae told me was that,if she knew that one day Sam would be the naughty,mischievous boy he is today,that she wouldn't have shed a tear.I try and remember that on my difficult, uncertain days.So these necklaces,called Trilliums,are just gorgeous.Check out the Trillium site and how they came to be and what they are all about.In my case,I bought mine to benefit Rae's hometown DDC.Check out her blog post about them and if the spirit moves you,order one of your own.Each one was written by a parent part of the DDC,which makes them one of a kind.Unique,just like our children.And me,I chose one made by Rae.With our adopted mantra written on it.Allows me to wear it and feel closer to Sam.Thank you Rae and thank you Sam.We are the ones blessed and lucky because of you.
Loved the two pictures of Zoey playing peek a boo with Joe and the video is VERY short as I ran out of memory.Zoey is just now beginning to do a bit of pretend play.Not often but when she does it is so darn cute.Pause the blog music if you want to listen.