The Beginning

     When I was pregnant, Fridays were the day I tracked my progress, the magical day when I would be transported from one week of new growths and developments to the next.  On these mornings I would read to my older daughter from the different Internet sites that compared my baby’s size to a variety of fruits and introduced her to new words like lanugo and amniotic.  Every week was like a small victory, one more week that the baby had survived, one more week closer to another perfect home birth.  

     It was a Friday night in January when I got the call from our pediatrician.  Now Fridays are the days I mark off from when I got the diagnosis, as if each new week will bring some thing new to my processing.  They say the first few months after diagnosis are the hardest.  I have a hard time believing this.  These first few months she’s a sweet, helpless baby who smiles fairly often and never cries.  These are not the months or years when she may be crying because she’s hungry, or finding a way to manipulate someone into giving her food.  These first few months I am not giving her a shot every night or posting a schedule of our menus and meal times.  These first few months I am not fearfully waiting any sign of extreme hunger.  These first few months it is not foreseeable how low her intelligence may be.   For now I can imagine her life with Prader-Willi as a success story, her as one of the ‘lucky’ ones who has a normal intelligence and, with a routine, can live a fairly normal life.

     This blog is about the journey we have begun, the emotional side of raising a 'special needs' baby, and the joy of her developmental achievements as they come.