Guest post: Empowerment - being the mother of a disabled child

[NicolaDMumsnet]

I was 36 and had been married for three years by the time my first child, Josephine, came along. With two different careers in teaching and publishing I thought I had some life experience; reasonable mothering instincts I assumed and a sense that life was going to change forever. It was a change I wanted and was excited to make.

As I wrote in my memoir: “Motherhood felt like being thrown out of a plane and not knowing how to use the parachute. But Josephine survived, so I must have pulled the cord.” This may sound extreme but, sadly, the change I wanted and the change that happened were poles apart.

Being a ‘different’ mother

You look at your baby, your baby looks at you. You smile at your baby and your baby smiles back. Neither happened for me. Ours – myself and my husband, Peter - was the story of a mismanaged labour leading to the birth of our firstborn with catastrophic brain injury. Ironically, our NCT class teacher had asked us to think about what it might be like if our baby had a disability. We’d been confident we would cope!

Being a mother to Josephine meant being a ‘different’ mother. She was different and so was everything about motherhood. It meant leaning heavily on doctors, nurses and other healthcare professionals from the outset, but it is testament to their professionalism that I learned so much from them.

The nurse said, “You’ve waited a long time for this. Tonight, you can practise being on your own with her.” She made it sound like some sort of game that little girls play with their dolls, pretending to be mummies. I felt like a child who’d had the stabilisers taken off her bike and been told to ride down the motorway before I’d even learned to balance.

The baby we took home - twisted with extreme spasticity, frequent seizures and unable to feed other than by a tube – meant training for us. She had no voice and slept most of the time due to heavy medication. It was hard to rely on mothering instincts when they didn’t produce the right results. Josephine’s spasticity made holding her painful and challenging. At times I was even scared I would retaliate when she pushed so hard against me.

A cry for help

The cavalry appeared in the form of physiotherapy, occupational therapy and visual stimulation. We found the Sense-run Woodside Family Centre, meeting other parents facing the same challenges and amazing professionals dedicated to understanding and working with children with complex needs.

Back in the 1990s and early 2000s, there was no social media, so face-to-face contact was invaluable. Today’s families have access to so much more information and experiences, yet online never quite replaces being in the room to share, laugh and cry together.

Crucially, I learned how to build collaborative relationships with healthcare professionals, leading to a better understanding of Josephine’s needs for all of us. Of course, there were still professionals who said: “You’re mum, you know best” – basically abdicating their responsibilities when it came to difficult medical decisions. I learned to challenge when needed, push back hard on occasions and take difficult decisions based on the best advice and information we had at the time.

Overcoming the guilt

Guilt is universal in motherhood, but it has a different twist when your child has complex needs. It took a doctor suggesting my daughter was hungry before I was prepared to let her have a feeding tube; hard to escape the thought that I had failed as a mother.

As a wider family we acquired the language of disability medicine; found the best ways of fighting our daughter’s corner; became ‘Parents-Not-To-Be-Messed-With’, but also true healthcare partners in the big decisions of our daughter’s life.

Over 23 years, I came a long way from being a terrified new mother to an empowered carer and advocate. Even my undiagnosed PTSD did not get in the way outwardly; I suffered silently, only recovering in the last few years of Josephine’s life after EMDR treatment.

A different normality

When Josephine was six years old and I was forty-three, I gave birth to a healthy son, now a young man who brings us joy every day. Josephine passed away in January 2017, leaving a gap in our lives we will never replace. My memoir is Josephine’s legacy – a story that needs to be told, but also a message of empowerment I hope will resonate with all mothers.

“And yet, I was no earth mother, not with either of my children. Parenting a profoundly disabled child is no less – and, perhaps, no more – complicated than parenting a ‘normal’ one."

Can I Speak to Josephine Please? is published by Resilient Books on 14th March. You can purchase it on Amazon and at all other good book retailers.