Sunday, June 12, 2016

It's my life

Recently, a lot of things on Facebook or in the news have caught my attention.

First is the letter a fellow mom wrote to the doctor who diagnosed her daughter with Down syndrome.  The letter has gone viral for a lot of great reasons.  It was even a top-trending topic yesterday on Facebook.  Major news networks have picked up the story.  It's a simple story that has touched hearts worldwide.  And stirred up a lot of controversy.  The letter is short and essentially tells the doctor, who encouraged abortion, that children with Down syndrome are a joy and a blessing; they don't degrade our quality of life, they enhance it beyond our wildest expectations.  The letter is meant to encourage a doctor to present unbiased information rather than encouraging a single course of action.  But the comments, egads, the comments.  Horrible, hateful, full of vitriol.  Reading just a few of the comments made me ill and sad.  Do people really see our kids as ugly blights on society?  Do they truly see so little value in a life like my son's? 

Second is a blog post shared by a dear friend of mine.  She didn't share it to me, it was just a general post on her own page.  But it struck a chord with many of our mutual friends, as they all posted affirmative reactions.  The post detailed how social media allows everyone to share their passions and causes, and how it feels like you're a horrible person if you don't take up the causes personally.  The author basically said "I don't have time for this" and that she was no longer listening to the causes of others, she was letting the guilt go, and she encouraged readers to let it go, too.

And third is an outcry from the disability community in response to the movie Me Before You.  (Disclaimer: I haven't seen the movie nor read the book.)  The main character is seriously injured after an accident, and he chooses to end his life because living with a disability isn't a life worth living.  I casually mentioned to a friend that there's a lot of controversy because the movie sends all the wrong messages.  She replied that people are too sensitive and need to get over themselves.

All of this culminates in some uncomfortable realizations.  The world doesn't care about my son.  It just doesn't.  I can post all the cute photos to advocate and spread awareness, but I'm not changing anyone's opinions.

Last night I stayed up too late and alone.  And my mind wandered...what's the point?  Should I keep this blog?  Should I post on Facebook?  If even my closest friends just don't care, then why bother?

But I came to this decision...

Because it's my life.

Down syndrome, disability, fighting for's not my cause.  It's my life.  I live this every single day.  Yes, I have other children and I still have friends outside the T21 community, but mostly, Down syndrome has become my focus.  Every day, I work with my son to teach him what he needs to know; how to talk, how to be polite, how to fend for himself in a world that doesn't give a rip.  I see a world that refuses to accept my son unless he talks like them, walks like them, and acts like them.  I don't see myself on a "Look at me!" disability high horse.  I've never even thought about that until someone posted such a comment on the letter to the doctor.  I see my life.  My son's life.  My family's life.  It's a life worth living.


  1. She had Bloom's Syndrome not Down's Syndrome, but your post reminded me of the fabulous Rivky Deren: