Wednesday, May 30, 2012

My Connection to Disability

What is your connection to disability?

This is the question put forth today by Meriah, one of my all-time favorite bloggers, mamas, writers and all-around people that inspires me to think and to feel.

There is a simple answer to that, of course.  My obvious connection is my daughter, Cora, who has Down syndrome.

But there is probably a less obvious answer, as well.  An answer that I am still discovering.  After Cora's diagnosis, I initially felt overwhelmed and unprepared.  What did I know about Down syndrome or disability?  I had never known anyone with Down syndrome, and had never been around people with disabilities much at all.  In fact, I'd been criticized by my dad for not being very patient for people who weren't as smart as I was.  His criticism didn't apply to people with cognitive disabilities, really, just ordinary people that may have made me work a little harder.  But still, it gave me something to think about, especially after Cora was born. 

I was taught to be kind and accepting toward people who are different.  After hearing my dad's stories as a little girl I felt it was my job to be friends with the kids that didn't fit in (funny perhaps, since I was so shy and tiny myself and often took a while to make friends after most of our moves).  I remember a friend in second grade named Robin who had a mild cognitive disability.  I remember another girl in sixth grade who ended up being rather mean.  For some reason that surprised me, to find that "different" didn't always mean sweet.  For a brief period while our parents spent time together, we had a friend who was deaf.

Although I made efforts to be nice in general, I will admit that disability wasn't always comfortable for me.  Disability really just seemed so distant, in a way.  It was seldom front and center in my life.  It was something that I didn't give much thought to and that I felt impervious to.

Before Cora arrived, I never once believed there could be a possibility of anything being "wrong" or different about her.  Several years before she was born, my husband confided that one of the reasons he was nervous to have children was that he had always had a feeling he would have a child with a disability.  I assured him that there was practically no way that could happen.  Quite funny now, really.

So when I recognized Down syndrome when I first gazed at the face of my newborn daughter, I was completely shocked and surprised.  I felt ill-equipped for a few hours, I am sure.

But within hours, the realization that she was meant to be with me exactly as she is began to permeate.  I began to feel like something that I had always been waiting for had arrived.  And not just the role of motherhood or the birth of my first child.  I began to feel that her "disability" was going to change my life into exactly what it was meant to be.  Maybe that seems a bit "woo woo", but the feeling was powerful and continues to this day.

The fact that Cora has a disability is sometimes evident.  She demonstrates delays and she's learning to do things a few steps behind most of her typically-developing peers.  But she is developing all the same.  She amazes me with what she is learning on a daily basis and with what she shows she understands.  My girl may learn and develop a little bit slower, but she is capable of so much.  She's already changed a number of lives.  As far as I am concerned, the sky is the limit.  And that goes for me too, since I am learning and growing each day along with her.   I am honored to get to witness her life.  She is transforming me into a truer version of myself.

Thank you Meriah for hosting this blog hop!  You can visit her blog, With a Little Moxie to check out other blogs that have linked up and to read more of Meriah's posts and get some glimpses at her adorable kids.


  1. Disability seemed distant to me too...interesting, isn't it? I'm impressed that she is not eating her chalk!

    1. Well, there IS a little bit of chalk surrounding her mouth. But it was interesting enough to play with that she didn't try TOO hard.

  2. Lovely post!! Love your little girl. :-) I was always uncomfortable around disability. Now that we've had to jump in head-first, we have learned that everyone is more alike than different!

  3. I was around someone with a disability, but I always felt uncomfortable too. And even now, I'm still learning. Cora's hair is getting long! She's such a cutie.

  4. I have not made the connection between Maddie->Down syndrome->disability...I am shy to say that they all go hand in hand..I still see Maddie as Maddie...I see her characteristics as Down syndrome...and I see her delays...but I say over and over...she is good for Maddie...this is hard..this is what I am afraid of...I have not been around anyone with Down syndrome...and still unwilling to put myself out there...I am still afraid of different...and it is such a me problem! I am slowly warming...I still read blogs incognito...and stalk people with Down syndrome in wal mart...and try to understand life with Maddie...this has me thinking and stretching my comfortableness! thanks...great post..smiles

  5. I love Cora. xoxo

    On the disability note. I'm still uncomfortable around disability sometimes - mostly because in this country it can be such a sensitive topic (like race). It's like the elephant in the room. While I don't really feel like it, I get this sense from some PWD that I'm supposed to talk about their disabilities - kind of like race - feeling when I talk with a black person that I don't know that race is hanging in the air and do we acknowledge it or not? What's the point and what's the intent? Is it important or is it not?

    The answers, I think, are all different for different people. Some don't care, and for others, their live revolve around the topic.

    Have I mentioned that I love Cora Bean? No? Okay, well, I need to tell you: I love your daughter!

  6. Disability has always made me uncomfortable too. My only connection was an uncle who suffered from mental illness. In the months before Ben was born I worried about what it would be like to care for a disabled adult. Of course, it wasn't rational to look so far in the future. But I did come to the realization that I never viewed those with cognitive disabilities as real people and because of that viewpoint I felt uncomfortable in their presence. Ben really has opened my eyes and my heart. I now look forward to enjoying life with an adult Ben and I hope to spend more time with other adults with cognitive disabilities.


Thank you for sharing your thoughts with me!