Monday, June 24, 2013

Down Syndrome Pregnancy: Help Throw a Lifeline

"Bad news.  You have 1 in 16 odds for Down syndrome. Only way to know for sure is amniocentesis.  You can call to schedule."

With those words, spoken by my perinatologist when I was 13 weeks pregnant, I found out that my life might change - what I considered at the time - dramatically.  If my pregnancy took place today, I most certainly would have taken a non-invasive prenatal screen blood test (technology that was not on the market 6 years ago), and I would have found out with a great deal of certainty, that Violette, my much loved and wanted 3rd daughter, had Down syndrome.

I know how scared and alone I felt with the higher risk.  I kept the news of my increased odds mostly to myself, with very few exceptions.  I think four other human beings knew (well, and The Best Mom's Ever - my friends from my October 1999 birth board as documented here) during my whole pregnancy, other than my OB.

When Violette was born, I was bowled over with grief (even with the time to prepare.)  I felt woefully inadequate to raise this unicorn in a field of horses - especially as an old grey mare.  My lifeline came in the form of other mothers with children with Down syndrome - they were the ones who knew just how to pull me back into the world of the living.  Nancy Iannone, blogs, like Big Blueberry Eyes and The Bates Motel that spoke about children just a bit older than Violette, and books like Gifts all pulled me out of my stupor and showed me what a meaningful and good life I could have.

In the days after Violette was born, I remember in my massive, crazy research I happened upon the Lettercase booklet.  I remember wishing that I had seen these materials when I was pregnant, and marveling at the pictures, and carefully chosen words.   The information in the booklet was the best I found.  I found comfort in looking at the booklet and reading those words in the weeks following Violette's birth.  No other organization at that time or since then had anything available that was even close to sharing the vision of hope mixed with realism that I had for my life with a child with Down syndrome that I found in that booklet (medical doctors and geneticists apparently agree with me - the booklets are often cited in research papers as the gold standard for materials for pregnant women who need to understand what a Down syndrome diagnosis means.)

Amazing also to me is that almost 6 years to the day after I became a mother of a child with Down syndrome, I can share a way to insure that other women, upon hearing that they are (or may be) having a child with Down syndrome get that booklet at no charge. 

Sevenly, sellers of cause and charity t-shirts and products,  is donating a portion of their proceeds from sales this week to Lettercase.  The products on the site are cool, affordable and support a cause that is near and dear to my heart.  I believe that accurate, up-to-date information should be given to every woman who learns they are having a child with Down syndrome.  Judgment words like "Bad News" don't belong in the discussion.  If you purchase a product from Sevenly, you help throw a lifeline to scared moms

Click here to view all of the cool products that they offer.  Thank you!

P.S.  Probably going to be a flurry of blog posts from me. I want to write about DS Achieves and the great work they are doing, and have to update on Wednesday about Violette turing SIX!!!  May even start posting some of the many draft blog posts I have sitting out in Blogger. 

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