A friend sent me her copy of No Ordinary Boy, a non-fiction personal narrative about a mother raising a child with a complex disability. It’s a slim volume, so while Rowenna took a long nap, I settled down to read.
It’s a beautiful book – heart-wrenching without being overly sentimental, spare prose offers you a glimpse into her life with Owen while still, I suspect, shielding her most cherished, intimate memories of her child.
While Owen’s diagnoses are vastly different than Rowenna’s, I felt a kinship with this mother and there were many times I put the book down to mull over something she had written, only to realize my own fledgling thoughts about disability were reflected back at me throughout the book.
By the end I was in tears (as the subtitle of the book suggests, her child does pass away), and left with more questions than answers as to where I go from here as a mother to a child with a disability, as a wife, as an advocate.
She poses some tough questions; she challenges the reader to consider the “why?” of it all – the things we do in Disability World that sometimes leave us with the nagging sense that there could be something more, something better, or that inaction at certain times is better, healthier, and a more authentic life experience. (The author also wrote a fabulous piece about “Fake Work” – shared here.)
And above all, reading this book was yet another affirmation that sometimes it’s ok to question all that is offered to and thrust upon us when we receive a diagnosis (of any kind), and that there’s something to be said for just letting a kid be a kid.
I would recommend this book to anyone – parents, other family members, caregivers, even doctors and nurses.
As for my sweet girl, she is doing well. She appears to be in a stage of increased desire for communication so we are trying our best to help her find ways to let us know what’s on her mind. She is also going through an “interesting” stage in which she will only eat what we eat, exactly how we eat it. Here’s her first experience with corn straight from the cob.