Discovering the real thoughts of the mother of a baby with disabilities

Posted: 05/04/2016

Alison Johnson, senior associate at Penningtons Manches LLP, came across a poignant article in The Guardian Weekend’s What I'm really thinking series which sums up the reality of being a parent to a disabled child emotively and beautifully.

The clinical negligence team at Penningtons Manches works with many families of children, who for varying reasons need additional support, and would like to pay tribute to their hardworking parents, who literally give their all to ensure that their children achieve the very most they can. This effort and dedication should not be underestimated. 

Below is an extract from the article: 

“I struggled with the prospect of becoming a mother to a disabled child. The turning point was finding an online community of parents of children with the same condition. They shared photos and stories – the children looked different, yes, but they were also happy and loved. I decided that I couldn’t let a worst case scenario determine whether a life was worth living.

We’d read about a surgeon who could close the hole in our baby’s back whilst he was in the womb, preventing further damage to his spine and brain. There were risks to both of us but at 23 weeks gestation, we both went under the knife.

We were unlucky. Three weeks later he was born. We spent most of the following year in hospital. A year of fraught vigils and never-ending nights.

Home at last, normal now means a routine of tube-feeding, tracheostomy care, catheterisation, physiotherapy, overnight shifts and endless logistics. His daddy adores him, so much so that we often clash over how to do things. At least neither of us has the energy to fall out for long.

Regrets? Not for a second. I never imagined such love in my life. Smiling, bouncing, adoring little man. The harder you fight for something, the more fiercely you cherish it.”

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