My friend Lindy and her three kids surprised us with a visit last week. They moved to LA a few years ago and we hardly ever see them, but we have one of those distance-proof friendships. Brooke, her daughter, was born with PWS just three weeks after Oscar in the same hospital. Most of those doctors had never seen a child with PWS before Oscar was born and actually delayed testing Brooke for it because the odds were so low that two kids would be born with this diagnosis at the same hospital in such a short period.
I remember the moment I got the call that another baby had been diagnosed. My heart sank and soared at the same time. I was devastated for the mom, but I also suddenly had company in my grief.
I spent many an afternoon curled up in the faded green chair in my living room talking to Lindy on the phone while the boys napped. We cried and shared feeding tips. We said things we couldn't say to anyone else.
Our kids presented differently with the syndrome...another reason we confused the NICU doctors I think. Brooke had better muscle tone and moved and rolled and batted at toys long before Oscar. Oscar had an easier time with eating and gained weight more easily (a good thing in the early months, but it still scared me).
Here they are in February 2001 -- Brooke was nearly two months old and Oscar just over three months old. Whenever I look at these pictures I remember how much I wanted Oscar to move. His shoulders were glued to the floor and it took every ounce of energy just to turn his head the slightest bit. Brooke, on the other hand, had more muscle tone -- look how her position changes in each picture and how she's tucking her body in to Oscar's. Notice how her arms are up and her fingers slightly curled. Oscar did move his head!
I spent a lot of time comparing Oscar to other kids (with and without PWS) in those early years trying to figure out how he was going to fare. I wondered obsessively if he was "mild" or "severe", terms I no longer use. I finally realized, after many many months of pouring over articles, talking and emailing with other moms, and interviewing doctors and therapists, that PWS is a syndrome comprised of many symptoms, each with its own spectrum of possibility. Just because a kid develops more quickly or slowly in one area really does not mean they will fare the same in another. A kid with super low tone, for example, is not necessarily going to struggle more with skin-picking or food-foraging. It is true, however, that a kid with better muscle tone can explore and learn from their environment, which can aid cognitive development. (I lost a bit of sleep over that.) It amazes me how this one set of pictures brings back all that angst.
Anyway, here are Brooke and Oscar at age four, re-enacting that baby scene. (Silly parents obviously put them up to this!)
And here they are now at age 10.