No Ordinary Boy
No Ordinary Boy is a relatively slim tome, only 144 pages long. It was written by Jennifer Johannesen not long after her son Owen died.
It is about his life – from the very beginning of it when he was still inside her – to the very end, some 12 years later. It is also the story, told in a remarkably neutral, candid and articulate voice, of a mother who is far from ordinary.
Jennifer had absolutely no experience with disability when she chose to keep her son Owen, and when she embarked upon a path less traveled – that of parenting a child with multiple – and severe – disabilities.
In her book, she doesn’t write of that so much as the gradual unfolding of each step, incline and bend along the way and how those twists and turns were perceived then navigated. First, it was his in-utero hydrops. Then his premature birth. Then his months-long stay in the NICU. Each unfolding, as it happens, is beautifully described and analyzed by her, then a solution reached.
What struck me in this was her pure positivity.
Don’t get me wrong – not a unicorns-and-rainbows perkily ‘positive’. Rather, it’s that pragmatic positivity that weaves its way tightly throughout her story and her recounting of her son’s life. It’s the type of positivity that comes from someone with an inherently positive outlook on life yet who is deeply practical, industrious . Who is essentially fair minded and thinks for herself – a strong woman with strong instincts who isn’t easily swayed.
Take, for example, his hearing.
Owen was deaf – and Jennifer and her husband were urged to give Owen a cochlear implant. She did not find his hearing loss depressing at all until she bombarded with “cheerful” information about cochlear implants (which she is startled to learn is a very invasive surgery) and the “fairy tale” of another young boy who, after receiving the implant, is able to hear crickets. She writes,
...my instinct was to reject the implant procedures. And besides, I was so grateful Owen was alive it didn't occur to me to be upset that he was deaf.
Jennifer’s clear and authentic voice coupled with her intelligence show a mother in motion with her children, a mother who is asking the hard questions that people tend to shy away from,
“How exactly are they friends, I wondered, if they are just sitting side-by-side at snack time? What does it mean, “Owen demonstrated leadership?”
She pokes around in her feelings regarding Special Education – and the grouping of children with severe disabilities together in the school her son attended She writes,
...maybe it's too much to ask that a school for severely disabled children should be set up in a dignified, inclusive and genuinely meaningful way; maybe it's wrong to criticize a system that makes up for poor execution with good intentions. But I don't think so.
She made choices that ran counter to what the medical system advised – choices like learning to sign rather than trying to make Owen learn to hear – and choices that embraced her son as a person who was worthy of a life of experience and joy, not a person who was essentially broken and in need of fixing.
This perspective – and the story of how she gained it – is worth reading by all parents, perhaps especially by parents of children with disabilities, as we are the ones that continue to feel the same type of pressure to engage in unending therapy and to treat our children as broken bits of human flesh.
I loved No Ordinary Boy, treasured Owen and Jennifer’s story. I am grateful she wrote it.
I cannot recommend this book highly enough.