Sunday, May 4, 2014

PWS Awareness Day 4: Quiet

"What a great sleeper!"
"You're so lucky!" 
"He's such a good baby!"

Strangers said these things to me while in line at the grocery, while pushing Abe on the park swings, while on walks in the neighborhood. Oscar would be slumped in his stroller or sagging in the baby bjorn with a little towel to support his head.  He slept all the time.  He never cried.

Some days I could just smile kindly and respond, "Yes he is."  

But other days I couldn't control myself.  "It's part of his disability!" I would shoot back, regretting my sharp words as soon as I registered the shocked looks staring back at me.

I'm not proud of those moments.  But there was something in me that needed to let people know we were not celebrating the quiet.

What did we celebrate?  Moments like these:

I don’t know why Oscar was crying here but I do know that it was his first real moment of upset.  I called Paul and we stood there watching, stunned and proud.  Our baby was crying!  Tears streamed down my face as I picked him up and comforted him. 

“Shh, little O, it’s ok. Mama’s here,”  I murmured into his cheek. 

He calmed immediately, but that brief moment in which he needed me sustained me for hours.


  1. Lovely story. Isn't it funny, how babies are judged as "good" when they're quiet? Are crying babies "bad" babies? Is it just that people can't think of what to say about anything that matters?

    1. Thanks Andrea. I appreciated most the people who commented on Oscar's eyes or noted how observant he looked....I suspect they "knew" and were offering hope.

  2. OH, Mary! This made ME cry! (are you proud of me :-) ) I remember putting Michael back in his isolette after holding him and hearing him crying. I just left him there, soaking in the moment.

    1. I'm SO proud of you. And I want to hear more (write!).