Saturday, May 24, 2014

PWS Awareness Day 24: Hope in Pictures

When Oscar was born and first diagnosed,  all I could think about was the insatiable appetite. I had nightmares about the food-seeking monster I thought he would become.  I envisioned him digging through garbage cans, unscrewing the locks off the cabinets, sneaking out of the house to steal food. 

There were few hopeful stories out there at that point.  Very little to balance out all the scary possibilities.  But one photo, that of a young girl with PWS in a little play house, stuck with me.  She was smiling, her head cocked to the side. The caption read "E frolicking with her preschool buddies".  Thirteen years later I can still conjure her thick dark hair, her deep brown eyes.  I can still remember repeating that caption -- frolicking with her preschool buddies -- over and over to myself, trying to drown out the nightmares. 

I've written about how pictures don't tell the whole story....but I also know that someday some mother (or father) of a newly diagnosed baby might find her way here, and that a few photos of young Oscar might provide a tiny bit of light in a dark moment.

 Oscar, 15 months, pulling books off the shelf

 Oscar, 22 months, playing peek-a-boo

 Oscar, 28 months, dancing to street music in San Francisco

 Oscar, 4.5 years, riding a scooter

 Oscar, age five, diving into the pool (or was it a belly flop?)


  1. He really is such a beautiful, beautiful boy.

  2. Replies
    1. I know! Exactly, though I didn't get into that...

  3. I can't thank you enough. I am that parent. My little boy was diagnosed at 3 weeks old due to complications at birth. All I can say is thank you for your posts. I have cried as I read them and they have given me hope that my baby will one day crawl and sit and walk and laugh. I have bookmarked your page so I can easily find this and reread when I need a pick me up. Sarah, Brisbane Australia


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