Wednesday, October 10, 2012

Did You Know It's Down Syndrome Awareness Month?

This is going to start out being completely un-related to the title and slowly transition to it. I promise.
 

All of us grow up in particular realities-a home, family, a clan, a small town, a neighborhood. Depending upon how we're brought up, we are either deeply aware of the particular reading of reality into which we are born, or we are peripherally aware of it. 
-Chaim Potok

I wish I could write with such insight and depth.

I was ecstatic when I found this quotation--for more than one reason. I was looking for a segue to tie the two differing ideas I just had to incorporate into this blog, and I inadvertently found the perfect quotation.
I want to say that I love Chaim Potok, but as I consistently find myself guilty of falling in love with an author after reading only one of his works and knowing little else about him, I won't.

It isn't just because his name is Chaim, and that very name inspires interest in me because I read a dozen too many Bodie Thoene books as a girl. It's because he wrote The Chosen, which I need to read again. Yes, I started reading The Chosen  because of the author's name.



I read it during, before, and after class while at school, so a second read-through is on my list of must-reads.

I picked up The Chosen because I was bored and--as my brother says--I will read anything. It's true. I'm a reading glutton.

My gluttonous style of reading is one of the reasons I love/keep/am addicted to/ facebook, and don't un-friend my 600+ facebook friends.

A good many of my "fb peeps" are between somewhat literate to extremely erudite and often share interesting, noteworthy news articles and blogs. I strongly encourage reading the Fox News and Huffington Post versions of the same story. Not only is it borderline hilarious to compare and contrast their differences, but you actually become so much better informed on whatever topics the op ed writers are ranting about for that week.

One day as I was scavenging my facebook news feed for "something new" I noticed a somewhat promising link that a fb friend had posted.  I don't know why I clicked on the link. I don't particularly care for this person, and her worldview isn't one that piques my interest. But there were         intriguing comments below the link. I was bored, almost hoping to be offended, or bemused, anything. It's facebook. We really don't know why we click what we click; we just do. 

I was so wrong.

That day I discovered Everything and Nothing from Essex, the hilarious, genuine, oh-so-snarky, and heartfelt blog of a former music teacher, turned doting, devoted, crazy mother bear to a little girl with Down Syndrome, and a little boy with the "average" number of chromosomes. (She's also an awesome wife, and her husband makes star appearances once and a while, when he's not working like a fiend.)  EANFE is not your typical mommy blog, filled with journal-like entries about peas versus carrots, disposable versus cloth diapers, like the sundry number of other mommy blogs. While she (Deanna) does write about her experiences/adventures of mommying two toddlers--in an absolutely hilarious style--she blogs about the day-to-day experiences, differences, trials, and utter joys of raising her daughter with Down Syndrome.  EANFE has captured and held my interest for a nearly a year now because  Deanna's writing style is one that is a pure delight to read. Her fingers and keyboard must have an excellent rapport, for each blog is witty, engaging, creative, and downright honest. And she has pictures with to die-for captions of her mischievous, yet cherubic, perfectly ADORABLE children, aged 2 1/2 and 1. Need I say more?

I can't stop reading it.

I've tried, but the adventures of Mama Deanna, Miss Addison, and the deliciously plump Mr. Carter keep pulling me back to EANFE, month after month, week after week,  and day after day. Everything and  Nothing from Essex is a part Pinterest, part Facebook, part tv show addiction, with writing that can do nothing but improve your own style and vocabulary.

I'm not the only one who thinks EANFE is addicting, or at least worthy of note. Do the link clicking dance over to Everything and Nothing and you'll find a pretty "2011 Parents[magazine] BEST special needs blog winner" badge adorning her site.

Before I became a EANFE fan (like it on facebook!) I knew nothing about Down Syndrome. Nada. Nuffffing. I could point out someone with DS because of their physical characteristics. But tell you what the genetic difference was? Traits, misconceptions, struggles, and blessings these precious babies and people radiate?  No. I was illiterate in the education of DS.

People with Down Syndrome, children who weren't born "perfectly healthy", didn't exist in the reality I grew up in, and was very aware of. People in my world/family/community didn't have babies with DS.  As a child I'd met a little boy with DS, and remember feeling sorry for his family, and thinking nothing more of it. As a young adult, I'd cared for a 65 year old woman who had DS and dementia, but aside from absolutely loving her, I didn't know anything about it.

My reality was an average number of chromosomes, an average to speedy learning style, and I was more than aware of that reality; I embraced it. I thought of nothing else; no other lifestyle.

Until ENAFE that is.

October is Down Syndrome awareness month, and in honor of that Everything&Nothing sports a new blog post every day (yay! yay! yay!) and lots of fun giveaways.

I heartily encourage you to mosey on over to Everything&Nothing. Sample Deanna's writing. Drool over the  pictures of yummy food that she posts.  Be brought to tears by the pictures and adventures of Addison and Carter, and commemorate Down Syndrome Awareness month by reading the firsthand account of a 21st century mama who is raising her precious daughter and defying stereotypes and obstacles.

I'd start with this one...

DS Mythbusters

For You created my inmost being; You knit me together in my mother's womb.(Psalm 139:13)

7 comments:

  1. Hi Susie...this is going to be a long and rambling comment...sorry (not really). I came over because Deanna posted your link...I will be staying! Such kind and true words about Deanna and her cuties. I have told her a few times we must be sisters of different mothers who live on opposite sides of the country and will likely never meet in real life...thank goodness for the internet to feed my addiction to her blog! Thanks for joining the October celebration of our cuties with extra chromosomes. And now I'm going to ramble on about your blog because one of the first things I noticed is our mutual love of Bodie Thoene! (I must confess that I thought of her as soon as you mention the name Chaim so I just had to laugh when you did too) Then there was your bio...love of reading, homeschooling (I was and am) airmen (pilot?) and California...are you sure we're not related? I just skimmed a few of your back posts and now I'm going to go read them for real :) Nice to (virtually) meet you.

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  2. Shauna--I love long, rambling comments :D
    I'm so glad someone else is a thoene diehard. I'm pretty sure those books shaped my growing up years and influenced my major choice. i also noticed (from your bio) that your fav book is anne of green gables. i adore l.m.montgomery. anne is my favorite literary character, ever. :) so excited to "meet" you.
    oh, and i used to go to school in riverside, which seems to be close to where you are now. :)

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  3. thanks for helping spread the Enlightenment story about DS ... I've been following Deanna after seeing her award in Parenting magazine. She's been one of the very reasons I was able to move forward in my own journey with DS ... great job spreading the news. Thank you on behalf of those involved with this journey.

    P.S. my son with DS is named Bode Chai (how ironic with this post above and the references to these names) ... we didn't realize he was born with DS until after we had his name too ... Bode means "messenger of God" ... and Chai, of course, is the Hebrew word meaning "life".

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  4. Okay, so, I also came over from EANFE -- and I'm staying too! The only book of Bodie Thoene I have read is Prague Counterpoint - but I loved it. Tell me more! What shall I read next?! :) Anne Shirley is one of my all-time favorites as well. I'm positive she would have been one of my best friends had I grown up in L.M. Montgomery's fictional world!

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    1. Marci, Prague Counterpoint is the third book in the Zion Covenant series, and I heartily recommend reading ALL of them. They all start with a city name (Vienna, Munich, etc.) and it is one of my favorite series. After you finish with that, I'd do the Zion Chronicles, which takes off with one of the characters from Covenant. The Thoenes have dozens of books out, so I'd google/amazon them for a full list. Even I haven't read all of them. I think I've read 2 dozen...about...:)

      Steph and KT--I know. I LOVE everything about Deanna and ENAFE, and my delight about her book is on such a high scale. I think her fans are going to be all the PR her books needs. :)

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    2. Thanks for the suggestions! I will have to see if they are on B&N so I can put them on my Nook. If not, good ol paperback will suffice :) Yay!

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  5. Hi! I too, came over from EANFE and I was so encouraged by your kind words towards Deanna. I had the same situation... I found Deanna's blog by reading a magazine article on her and her family. I fell in love with Miss. Addison's beautiful face and the amazing story about her. I was SO addicted to her blog I just COULDN'T stop reading. I LOVE Deanna and her blog. If I'm having a bad day, I read a post by Deanna and can usually cheer up in about a minute! She has that talent about her, so I am excited for when her book comes out! :)
    Stepheny

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