Monday, June 25, 2012


Lately I have been thinking a lot of down syndrome.  The effect it has on our life day in and day out and  mainly on Nolan's.  I think it has a lot to do with pregnancy hormones, sleepless nights during these last couple weeks, the anxiety and excitement of this pending birth.  I read a blog, here, I love her blogs, mainly because they are very honest and real and I relate to most everything she says.  Anyway, it got me thinking a lot, about the fact that what really bothers me about DS is the label itself.  This label of your kid is (insert here).  Not just a kid anymore, but a diagnosis, larger than him and along with that is all the stereotypes and images that come with it, and I can't stand it!  I relate so acutely now to other minority groups, how they are thrust into categories and without one word spoken judged for a certain feature of their face or skin color, which in reality is rather ridiculous.  

Truth is that yes, there are valid points in stereotyping people, often times it is accurate and you can find truth in it, but there is of course so much more.  I cringe when I see an overweight, unkept person who has down syndrome and think, "really? is that Nolan's future?".  I know that it isn't, the one thing this mama knows is he won't be unkept, as it is something within my control, but as for everything else, not really.  People's instant judgements, critiques, cringes, lack of understanding, I got nothin for that.  And it stings, to the core.  Why is it that society is cruel and shallow? So selfish and unrelenting?  When ALL of us, every single one of us, simply want to be loved and accepted and acknowledged.  Why is that so hard?  I wish it weren't.

I know this, I can't stand thinking about the future with Nolan I get choked up, sick to my stomach and pulled back to reality that is now.  We could all be dead in a year, and I would have waisted this precious time having ulcers over something that will most likely be nothing even remotely similar to what I think.  I realize that after almost two years and all the perspectives that have changed right now.  I mean when Nolan was born I couldn't imagine what he would do if anything?  I thought day and night about his level of functioning and what it would "look like".  Well, here we are and does he walk, no, does he talk, no, but he is amazing and giggles constantly and explores his world and gets into trouble and wrestles with his siblings and we adore him and are just perfectly fine with his accomplishments, so there!  Who knew then that we'd be content with him as HIM.  And won't we when he's 10 or 20 or 30 too?  Of course we will.  Because at the end of the day, DS doesn't matter, nothing matters more than the fact that he is our son and we will never see him as anything less.  That's all we need to know today about tomorrow.


  1. Wise words. :-) I like Jenny's posts, too. She speaks her mind, and lets it all out! And I think all of that really helps with understanding Down syndrome and how it fits in with our lives. I think about Down syndrome a lot, but only because it's a part of my life - I read blogs, have lots of Facebook friends, am involved with our local Ds organization. But when I look at Samantha, I *don't* think about Down syndrome. I think about my beautiful, smart, funny daughter who is everything and more than I could have hoped for in a child.

  2. Thank you :)

    I loved the last line of this post, it's perfect...

    "That's all we need to know today about tomorrow"

    I totally worry to much about the future...From now on I am going to run that line through my head every time I start to feel that fear of the future creep in. Awesome post!

  3. I love your honesty. It is complicated but at the end of the day, Ds does not matter much for they are our babies. ALL of are children will be stereotyped or picked on or talked about though that is often hard to remember. If we teach ALL our children about love and acceptance perhaps it will ease some of the pain.

    You are a strong Mama who will serve her child well. Looking forward to hearing about the new addition!


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