The moment everything changes…

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The moment everything changes…

A defining moment can happen anywhere, for us it came at ten weeks old, in the Hammersmith hospital in London. It was the line in the sand that once stepped over, there was no turning back.

‘When my son was in the scanner for longer than expected, a battle began in my mind.

Was this a good or bad sign? What had they found? Why was it taking so long?

Suddenly the door opened and our doctor approached.

“Well the scan is finished.” Was that a smile of sympathy?

“You can take him back to the ward. We will come and explain the results in detail later.”

I shot a look at my husband.

“That can’t be good news,” I whispered. “She would have said if it was good news.”

“Don’t worry. It means nothing. Let’s just wait until we speak to the consultant.”

As my son came round on the ward, I fed him and surrounded him with love. The doctor returned and we played follow my leader through the hospital once more. Our family proceeded along anonymous corridors heading towards the truth. My heart raced and thumped at my chest wall.

My husband kept a firm grip of my hand as I silently reminded myself the baby we had grown to love and adore would not change with these results.

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 sat down, leaving my boy in his buggy beside me, and allowed my eyes to wander towards a brain scan displayed in the corner of the room. Previously, I had witnessed patients endure this moment, receiving good and bad news, but today the image on the screen held the ability to change my life forever.

 

“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 rigid and gazed across at the scan. In that moment began to see a withered, shrunken brain, with deep darkened rims of space where healthy tissue should have been. She explained my son’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 his 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.

Brain scan

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.”

My husband 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.

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. Our medical backgrounds brought insight into the myriad of potential complications.

Sometimes ignorance is bliss.

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 the moment I heard my little boy had profound brain damage.’

 Extract from The Skies I’m Under available on paperback via this website or Kindle and paperback through Amazon.

If you have found my writing helpful, funny, or you just like to read it, then please head over to My Family Our Needs and nominate me for one the BAPS awards.

Thanks, Rachel

By | 2017-10-19T06:04:29+00:00 July 4th, 2017|Categories: disability, expectations, hope, mum of child with disability|Tags: , , |2 Comments

About the Author:

Qualified Nurse, Writer, Trainer, Public Speaker and unqualified parent of three. My days consist of Lego, laundry and loving three boys, one of whom has complex and life-limiting disabilities.

2 Comments

  1. Fran Goggins July 5, 2017 at 7:34 pm - Reply

    Stunning. By that I mean I am stunned by your honesty and ability to translate your experience without looking for sympathy. I am going to buy your book because I want to and I am genuinely interested in what happens to Sam and your family. Thanks

  2. Hannah July 7, 2017 at 9:22 pm - Reply

    Rachel, you have written so much of what is in my heart here. I am a nursing student and my eldest little boy was recently diagnosed with muscular dystrophy. I feel your devastation. I feel your fear of the unknown. I feel your desire to be ignorant of what the future most likely holds. Thank you for sharing your journey.

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