Tuesday, May 27, 2014

PWS Awareness Day 27: Predicting the Future

Oscar was late for every gross motor milestone.  Late to roll over. Late to sit up. Late to walk. And every interaction with a typical baby was a reminder of just how behind he was. I remember laying him down on a blanket at the park next to my friends' babies, ones that were born months later.  His arms and legs lay still at his sides while those babies kicked and rolled effortlessly.

Early on I perseverated (yes I perseverate too!) about Oscar's gross motor skills.  They were one of few tangible measures of how he was doing, and I wondered if his delay in rolling over, in walking, would predict how severely affected he would be in other areas as well.   I peppered his physical therapist, the geneticist, the endocrinologist, every parent I met, about whether his significantly low tone meant he would be more cognitively challenged, more likely to food seek at an earlier age, have more severe tantrums.

I wish I could remember who it was that helped me understand that PWS was a syndrome comprised of distinct characteristics, and that the degree to which Oscar was affected in one area was in no way predictive of future struggles or successes in another.   For a mom desperately trying to figure out what the future held this was both reassuring and frustrating. I was glad Oscar's muscle tone couldn't be definitively linked to a lower IQ, but I also really wanted to know what his life, our lives, would be like.

Oscar did eventually sit up:
 and ride a bike:

And eventually I gave up on trying to guess how impacted he would be by other aspects of the syndrome as he got older.   Eventually I learned to live a little more in the present.


  1. It must have helped on some superficial level that he is as beautiful as an angel!

    1. I am sure that it did! Those days are such a blur and I often wish I could rewind and relive them with a heck of a lot less fear.

  2. This tab is open from this morning when I read and was going to respond. Each post I reminds me how honored I am to have you as a friend and writing partner.

  3. I can imagine how hard and difficult in managing all the appointments, children needs, and their activities. Your way of presenting your emotional and coping with your son's special needs are amazing! I have a brother with especial needs, I remembered how hard it's to dress him given him a bath while he is in the age of puberty. I used to cried sometimes wondering how he will handle taking care of himself when I will be away from him. I am giving you a two thumps up!