#BlogTour #RandomThingsTours @RandomTTours / #Excerpt : The Cracks That Let The Light In : What I Learned From My Disabled Son #TheCracksThatLetTheLightIn – Jessica Moxham @jessmoxham @Octopus_Books

– ‘The Magic of Wor(l)ds’ blog is a hobby, reviews and other bookish stuff on this site are done for free. –

Today I’m on the ‘The Cracks That Let The Light In’ blogtour, organized by Random Things Tours.
To promote this book I have an excerpt, but before I let you read it first some ‘basic’ information.

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 at http://www.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 and Twitter.

Synopsis :

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.


Excerpt :

I had been in labour for many hours when I am told my baby Ben is in distress and needs to be born immediately. His heart rate is low, they say, and there is no time for local anaesthetic. There is a sharp pain and out he comes. He is immediately cut from me and carried over to a plinth where midwives lean over him, suctioning and murmuring. There is silence apart from low, urgent conversation between midwives and then doctors. People hurry in and out and pay my baby close attention. Where there should be the sound of a baby crying there is nothing.
I know very little about the realities of childbirth but I know a baby is meant to make some noise. Something has gone horribly wrong. After hours of gas and air and contractions I feel detached while also very present in a body that is tired and hurt.
I have a thought that is sharp and brittle: this might not be OK.
‘He’s not making any noise,’ I say to James.
I haven’t yet seen Ben when he is taken away to intensive care in a flurry of medics. I am told he had been born unresponsive but has been resuscitated. He now needs specialist help. It is serious. James steps out of the room to call my parents. After my mum and dad arrive, a doctor comes in and stands at the end of my bed while James holds my hand. ‘I think that at some point during your labour your baby didn’t get enough oxygen. He is now very sick,’ she says.
I ask to visit Ben and, since I can’t yet walk, my bed is pushed along bright corridors and through doors to the neonatal unit nearby. It doesn’t feel right to be travelling through the public areas of the hospital, passing the relatives of other labouring women, in the bed I have just given birth in. I check I am fully covered with a sheet.
Two midwives squeeze my bed into the room where my baby is lying on a cot, very still, plump, not yet clean and covered in tubes. I am not allowed to touch him. I don’t know what to think.
I have still not delivered the placenta so, after returning from seeing Ben, I am taken to an operating theatre to have it removed. As the doctor finishes the procedure and I am being stitched, the anaesthetist speaks to me kindly, holding my hand, and I realize that I am a person who should be treated sympathetically.
I arrive in the recovery room and am told that my baby needs to be transferred to a different hospital with expertise in a particular cooling treatment that this hospital doesn’t have.
This cooling treatment may help minimize the damage caused by oxygen deprivation.
‘Can I see him before he leaves?’ I ask.
‘I’ll see what I can do,’ the neonatologist replies. ‘I’ll speak to the transfer team.’
Ben arrives a while later in a different cot to the one I had last seen him in, surrounded by machines and tubes, pushed by a team of four people who will keep him alive for this journey. Their uniforms look professional and urgent. I can only just see Ben through the medical equipment surrounding him. They manage to manoeuvre his cot close enough so that when they open a small window in the side, I can hold his tiny hand for the first time. I didn’t know that this was how a birth could go. I don’t feel prepared for any of it.

The Magic of Wor(l)ds

Een gedachte over “#BlogTour #RandomThingsTours @RandomTTours / #Excerpt : The Cracks That Let The Light In : What I Learned From My Disabled Son #TheCracksThatLetTheLightIn – Jessica Moxham @jessmoxham @Octopus_Books

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