“The Cracks That Let the Light In is about what happened when it felt like my life had fallen apart and how I put it back together. It’s about family, love and how to be happy when your life turns out nothing like you planned.”
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. But after giving birth, she found herself facing a different, more uncertain reality to the one she had expected. Her son, Ben, was fighting to stay alive. Even when Jessica could finally take him home from hospital, the challenges were far from over.
Ben’s disability means he needs help with all aspects of his daily life. Jessica has had 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.
In this uplifting and hopeful memoir, Jessica shares her challenging and emotional journey. As Ben begins to thrive, alongside his two younger siblings, Jessica finds that caring for a child with unique needs teaches her about resilience, appreciating difference and doing things your own way.
This powerful story is about the strength of family love, inner strength and hope. It is a story of motherhood.
From the book:
“I get the kids to bed and sit on the sofa eating dinner and watching TV on my own because James is out. It’s winter so it’s dark outside and I have drawn the curtains. I have Ben’s video monitor with me and I can see he is still awake, moving his arms and shaking his head. I put the monitor down next to me with the volume up. I am so attuned to the sound of Ben going to sleep and the unremarkable noises he makes that I needn’t watch the screen to know if he’s OK. Despite the background rumble of recorded waves hitting the shore from the monitor, I hear an unusual noise. I pick it up and see on the little illuminated screen that Ben is gagging and struggling to breathe. This is not unusual but it means there’s a reasonable chance he is going to be sick. As I watch to see whether he needs my help, I see a little light appear just above the side of Ben’s bed. The room is very dark so it is hard to make out, but Max’s little book-reading lamp is illuminating his own face as well as Ben’s as he stands at the side of the bed, saying,
‘You’re OK, Ben. Breathe, Benben. Remember to breathe.’
Ben inhales deeply and coughs. His breathing returns to normal and he is OK. The light disappears. I carry on watching them, just in case, and a few minutes later Ben gags again. Up pops the light and Max’s dimly lit face telling Ben,
‘Breathe, Benben. It’s OK, Ben. You’ll be all right.’
I can hear myself in Max’s words. He is mimicking what James or I would say if we were standing at the side of Ben’s hospital-style bed, raised high to suit our backs. Max hasn’t dropped the bed side like we would because the mechanism is too difficult for a six-year-old, but he can just about peer over the top if he stands on his tiptoes. He sleeps on a bed on the floor next to Ben so he is close, as he asked to be. Ben is still unsettled. Max is so gentle, comforting and mature that I can’t bear it. I run upstairs – fast enough but not as fast as I do when Ben is actually vomiting – push open the door and pretend I haven’t been watching them talking.
‘Is everything OK?’ I ask breezily.
Max tells me Ben is feeling sick but he has stopped gagging. I check him and then say goodnight again. I watch Ben go to sleep on the monitor downstairs.
I forget to tell James about it for a few days, and once I remember I tell the story to him, Maddy and both grandmothers within a week. Everyone I tell gets tears in their eyes and I too get a tingle in the back of my throat – not because Ben was suffering but because bearing witness to Max being so solicitous to Ben’s needs makes my heart want to explode. Max was calm that night because he’d seen Ben gag before. Possibly hundreds of times. It is not unusual and Max knows that it’s likely to be OK. He used to be terrified of Ben vomiting and would run to hide in another room when it happened but now he has got used to it. I don’t like that he has had to adjust to such things. Max was being helpful because he’s a good brother and he has a sense of responsibility. I don’t know how much of that is a typical relationship between a nine- and a six-year-old, and how much is because Ben is disabled.”
Thanks to Jessica for sending the extract and best wishes with the book and blog tour.
ABOUT THE AUTHOR
Jessica Moxham is a writer with interest in the areas of parenting and disability. Her eldest son, Ben, is
severely disabled. She writes a blog called son-stories.com discussing how she and her family support him
with his disability. Her blog is read by parents, health professionals and educators, among others. Jessica has given lectures to health professionals on her family’s experience, from small groups of students to more than 100 doctors at the Royal College of Paediatrics and Child Health. She has been interviewed on BBC Radio 5 Live and has written for the Guardian on austerity and disability. She is also a qualified architect and has worked in London and the Middle East. Jessica now lives in London with her husband and three children, in the house she redesigned to suit Ben.
Follow Jessica on Instagram at @jessmoxham