Published by: Endeavour
Date released: 04/03/2021
Date read: 20/03/2021
Jessica Moxham thought she was prepared for the experience of motherhood. Armed with advice from friends and family, parenting books and antenatal classes, she felt ready.
After giving birth, she found herself facing a different, more uncertain reality. Her son, Ben, was fighting to stay alive. When Jessica could finally take him home from hospital, the challenges were far from over.
In this hopeful memoir, Jessica shares her journey in raising Ben. His disability means he will never be able to move or communicate without assistance. Jessica has to learn how to feed Ben when he can’t eat, wrestle with red tape to secure his education and defend his basic rights in the face of discrimination. As Ben begins to thrive, alongside his two younger siblings, Jessica finds that caring for a child with unique needs teaches her about appreciating difference and doing things your own way.
This uplifting story is about the power of family love, finding inner strength, and above all, hope.
It’s true what Jessica says in this book, not many adults are used to seeing, talking to, and being around disabled children, or disabled people in general. There’s an awkwardness, a sense of embarrassment, like they don’t know what to say or how to act around them, like they’re something other than one human being talking to another human being.
I guess I’m slightly different in that way. My mother taught at a school for disabled children for over 15 years, so I grew up surrounded by differently abled children since the age of six. To me, I don’t notice if a child is in a wheelchair or is walking, I don’t notice when someone doesn’t communicate as well as someone else, or if they have to get their nutrition through a tube instead of eating orally. They are just children. I don’t tend to notice if a disabled person is in my periphery until someone else points them out.
I can understand though, if you don’t have experience with differently abled people, how you might feel shocked or awkward as to how to behave, and I think Jessica explains that explicitly in this book. Ben is her first-born son and will always love him as that, but at first, there is a sense of not knowing how to manage a child with a disability, even if it is your child. And there’s nothing to be ashamed or apologetic for about this.
I did find it a fascinating book, but I feel you would get more from it if you don’t already have that background with disabilities. If this was the first time you were faced with a child who couldn’t walk, couldn’t talk, and couldn’t eat. Because of my experience, none of this is new, and maybe I didn’t have the response that others would have had whilst reading it.
Unfortunately, some people do have the unconscious tendency to talk about a disabled person instead of to them. They talk to their carers, their friends, their parents, their nurses, but never to them. Disabled people are not people to be afraid of. They have their own way of living, and that’s a great thing.
There’s something Jessica says near the end of the book that I think sums it all up perfectly, and that we all must remember:
“I started learning from disabled people about their lives and challenges. I opened my eyes and my ears and was encouraged and emboldened by what I saw and heard.”