I’m hesitant to write this, lest I jinx it, but my low-toned, slow-processing, highly-anxious, and easily-fatigued 11 year old with Prader-Willi syndrome has lately become quite feisty. More flexible. Slightly mischievous. And funny!
He’s speaking in silly voices with a goofy grin on his face. He’s (very) occasionally interjecting with appropriately witty comments. He’s initiating pile-ons during reading time. Last week he calmly and expertly articulated his case for not having to again be the one to sit squeezed between his siblings in the cramped backseat for a two-hour car trip. And, on Christmas Eve, he was even spotted galloping around the coffee table with his cousins shrieking “Presents! Presents! Presents!”.
Eleven years ago now, at our very first Prader-Willi support group meeting I remember cradling Oscar’s limp body in my arms while talking to the father of a ten-year old boy with PWS. His son, the oldest of the kids at the meeting, floored me with his social skills and verbal abilities. He was slim, happy, articulate, and, in that short window, exhibited none of the challenges I’d spent the two months since Oscar’s birth and diagnosis weeping over in the scary PWS literature. I cringe now at how I peppered the father with questions about his son’s interest in food, his performance in school, his behavioral profile. I don’t remember many of the details of our conversation now except the dad leaning in conspiratorially, whispering “it’s going so well, I just wonder sometimes when the other shoe is going to drop.”
Lately I’ve found myself wondering the same thing. Of course we have our share of struggles – behavioral outbursts, stubborn moments, anxiety over food, etc, etc – but none of it is nearly as bad as I feared when Oscar was born. Right now Oscar seems to only be increasing in his adaptability, participation, resilience, and, surprisingly, his ability to understand and use humor.
I’m watching in amazement as this more engaged and mature Oscar emerges, while also wondering if I am appreciating his growth only because I know we are on the verge of puberty, that infamously difficult time for all kids, but especially for kids with PWS. Am I over-celebrating his achievements now because at any moment “the other shoe might drop”? Possibly. Or maybe I am finally just appreciating what is, rather than fearing what might be.
Mary Hill lives in Berkeley, CA and is the mother of three children, ages 13, 11, and 7. She is ever hopeful that she'll start blogging again soon over at Finding Joy in Simple Things.