Rachel is mum to Sam, who has severe cerebral palsy. She writes a blog, and she’s just published a book called The Skies I’m Under.
She’s doing a Q&A on our community this week – feel free to come and say hello! Here Rachel talks about her experience at the time of diagnosis.
Memory is a funny thing. I can tell you the name of the boy I fancied aged nine (Andrew Jafferies) and sing you the ‘Milkyway’ advert from start to finish, but I can’t tell you why I just walked into the living room. It seems my brain is very good at identifying important information and promptly forgetting it.
A day I’ll never forget
There are some things though I will never forget. Like the day I was told my son, Sam, had been born with severe brain damage. Three years ago, I set off on a journey of remembering. I sat in the summerhouse in my garden and started writing about my early days of motherhood. I wasn’t just sketching out what had happened but I settled there, and filled in the hues and shades of a time when my life was turned upside down.
Last month, I published my memoir about becoming the mum of a severely disabled son, so now others can walk this road with me. Here’s an extract from The Skies I’m Under. It tells of how my husband, Tim, and I were told the results of an MRI scan that confirmed Sam’s brain damage.
“I’m afraid it isn’t good news.”
‘The doctor in front of us finally stopped, swung open a door, and showed us into a small office. We entered clinging onto our hopes of a miracle, with our dreams intact. The room resembled a large cupboard, absent of a two-seater sofa or box of tissues. With the small room void of natural light, limited space and haphazard layout, the doctor was required to perch on the edge of a desk as she began to talk.
“I’m Doctor Rutherford,” the slight woman explained. She introduced her colleague, whom we had seen earlier that day.
“I’m afraid it isn’t good news. The scan shows severe brain damage.” Her words were spoken lightly, yet the room began to close in. She gently and calmly explained in detail how the scan showed Sam had been very unlucky.
I sat rigidly and gazed across at the scan. I began to see a withered, shrunken brain, with deep darkened rims of space where healthy tissue should have been. She explained Sam’s brain damage was both unusual and extensive. Not only had he suffered damage to the white matter but also the grey matter.
“From the scan we can only assume that numerous insults occurred in the time leading up to Sam’s birth and then again at delivery,” she informed us. Her words became a blur of white noise as my mind drowned out the truth; replaying all the times I may have allowed this catastrophic event to occur.
How had I missed my baby struggling inside me?
How had I carried on singing, stripping wallpaper and going about my daily life, when the fragile being inside me was suffering repeated insults?
What kind of mother was I?
Refocusing on the words being thrown around the room, I brought my mind back to the small office and information I wanted to ignore.
“All parts of his brain are affected. He will live with cerebral palsy… resulting in learning difficulties… as well as physical limitations.” There was nothing to say, so we simply nodded, indicating our readiness to hear more.
“He will have complex needs and it seems the areas affecting temperature regulation and vision are particularly damaged.”
Tim bravely asked questions and I was surprised at his ability to talk with a steady voice. The doctor remained vague. We weren’t told he would never walk, talk or eat, but it was indicated that each of these things was in jeopardy.
Our future plans were erased
It was as though the doctor conjured up a paintbrush dripping with brilliant white emulsion and began covering the wall of our future. What had once displayed vivid colourful strokes of our hopes, dreams and future plans, was being abruptly erased. The blank canvas that remained felt daunting rather than full of potential. Nothing could be assumed, and nothing could be expected.
A bomb had exploded in the middle of our lives splintering our world into thousands of tiny pieces. Like walking wounded, we staggered out of the hospital holding onto each other, dazed and bewildered. The words spoken over us rang in our ears. As reality began to sink in, I was surprised at the magnitude of my shock. I simply hadn’t prepared myself for hearing my little boy had profound brain damage.’
A different outlook
I couldn’t imagine what my life would become and how hard it would be. I struggled picturing a world where my son was disabled and my home full of disability equipment. Today, I appreciate that the most picturesque views are often found down a bumpy road. I couldn’t foresee neither the heartache, the love, nor the smiles.
Win a signed copy! Ts&Cs
Want to win a signed copy of Rachel’s book? To enter, sign up to the community and comment on Rachel’s discussion. Only one entry per person. The prize draw closes on 1 February at 10am. The winner will be chosen at random after this date and notified via email. The book can only be posted to addresses in the UK and no cash equivalent or alternative prize will be offered.
Rachel is doing a Q&A on our online community from 25 to 31 January. You can ask her about her experiences and find out more about her book.