Wednesday, March 4, 2009

Inspecting the Pieces

It hit me today that I am going through another cycle of grief. I don't know what triggered it, or when it started. It's subtle at first - I pull inward. I talk less to the other parents at pick-up. I reach out less to my friends. It feels like work to smile. I have a shorter fuse. Finally it occurred to me that I'm grieving PWS again, and this time it's the food.

People with PWS are never full and their thoughts are often centered on food. They can't eat as many calories as a typical person either, and are at serious risk of dying if they get too much food. When we first heard about PWS I thought it was a joke. I kept asking who made up this horrible disorder. Always hungry? Eating from garbage cans? Locked refrigerators? Come ON.

It doesn't start overnight. Or at least not for Oscar. It's been a gradual process. We put lots of measures in place early to keep Oscar safe and give him the best chance of success. We eat healthily. We follow a routine and stick to it. We do everything we can and it won't be enough.

Lately, Oscar can't play while I am making dinner because he is so distracted by the food and the thoughts of what he will get on his plate. He sits on the couch in the next room and pretends not to be watching me slice carrots, but he is. He doesn't hear me ask him to wash his hands for dinner because he is looking into the pots. At the table he uses his finger to get every last morsel and hides his hand when I glance in his direction. He drinks his salad dressing. I have to figure out food for every situation. I dread Valentine's Day and Halloween, and parties. I am always watching, planning, smoothing, explaining.

And Abe! Abe waits till Oscar is napping to have his snack. He knows how to use the magnetic locks we have on our cabinets. He helps me cook only when Oscar is sleeping, and he points to his choice on restaurant menus rather than stating aloud what he wants. He chooses salad over fries some of the time.

I did laugh today, which is a good sign. As I was driving through the rain to pick Ruby up from school I remembered when Paul and I started grief therapy. Oscar was about 6 weeks old and I had finally realized that the doctors couldn't make PWS or its symptoms go away. I thought, though, that with a session or two of therapy, we'd be over the grief and the pain, and able to move forward in our new life with Oscar. I find that so funny now. I was so naive! The therapy was extraordinarily helpful, but the work is hard and the grief doesn't ever go away. You acknowledge it, you find space for it, and eventually you learn to live alongside it. Sometimes you are even proud of it because of what you have learned about yourself along the way.

But occasionally you need to take it out and pull it apart and inspect each little piece again. I think that's where I am now. I'm looking at the pieces of my Prader-Willi grief, paying extra attention to the food aspect. I hope that I can wrap it up soon and put it all back in that space I carved out long ago. I'm tired of grieving. It gets old.


  1. Ugh -- I know this all too well. This weight that settles upon me just when I thought that I had integrated the last pound -- it appears out of nowhere and just REMINDS me of it all -- the loss, the grief, etc. You've articulated so well the compensations you've had to make as you "live" with the disability of your son.

  2. Wow, Mary, I can't even imagine. That has got to be so hard when food is such an everywhere, casual thing, tied to fun and celebration and, well, for my family, practically everything.

    As you allude to in your first line, grief tends to get you in cycles. The other part of the cycle is you rising back above water, feeling good & strong & capable. I hope you're feeling better soon!

  3. Elizabeth - I love how you describe the weight of the grief and integrating it, pound by pound. That's exactly how it feels.
    Beth - Thanks for reading this one - you made me feel better about writing it. I wrote a follow-up the next day that I'm having trouble posting. But I am feeling strong again, back above the water.