Thursday, May 1, 2014

PWS Awareness Kickoff: Before

May is Prader-Willi awareness month and many of my facebook friends are committing to posting daily about PWS to raise awareness about the disorder and how it affects their child and their family.

I'm going to give it a shot on my blog (on an almost-sort-of-daily basis), and am kicking off the month with what I call the "before" picture. 

Paul's dad snapped this photo of us with Abe (age two) as we headed off to the hospital. Oscar would be born 12 hours later.

This is me before I'd ever heard of Prader-Willi syndrome. Before I knew what low muscle tone and insatiable appetite meant.  Before I really knew what pain, grief, and even joy, really were.

I used to want to go back to this moment, to climb back into my younger self's innocence and relish it.  But that's the thing about innocence -- you can't really appreciate it until it is gone. 

I don't have a plan for this month of blogging but I'm hoping it will give me a chance to share little snippets from our daily life and how we've approached this complex disorder.  Stay tuned!


  1. What a precious photo, and despite peering closely, I don't think we could ever imagine what we might have looked like had we known what would follow!

    1. You are so right Elizabeth! And I wouldn't want to. But I do see less worry, less stress in this photo. And also less wisdom.

  2. If you post every day I will comment every day!

    You see innocence. I see someone with an inner tiger that's about to wake up.

    1. I will try -- somehow I know already that I will miss a day but you will not!

      And now you have me wondering how asleep that tiger was....I need to figure that out (through writing of course).