Being enabled to love and cherish my daughter

For Sheila and Peter, the birth of their daughter, Josephine, in 1993 turned their world upside-down. Due to medical negligence during labour, Josephine was left with very complex disabilities. We spoke to Sheila about her new book which reflects on this time of monumental adjustment, giving rare insights into the hidden world of fulltime care, post-natal PTSD and unshakable parental love.

Can I speak to Josephine please? – by Sheila Brill

It’s hard to write a book that’s so personal. You expose yourself. But it feels important to be honest. There was so much I hid during Josephine’s life, either to protect myself or, I thought, other people. On reflection, you wonder if that was the right thing to do. My own husband didn’t know that I was suffering from post-natal PTSD for years, or half the things that were going on inside my head.

There were times when I was desperate and angry – and the book is shocking – but I think that even the most challenging revelations will resonate with some parents. Writing everything into this book also gives me hope that hospitals will see fewer errors in childbirth in the future. I know that without reform, stories like Josephine’s will, sadly, continue to be told.

It doesn’t feel like being a “mum”

I gave birth to Josephine on 11 May 1993. She was beautiful, and for 23 years we had a loving mother-daughter relationship – but one with a difference. Due to clinical negligence, my daughter suffered catastrophic brain injury at birth, leading to profound and multiple physical and learning difficulties.

I thought that instincts would just carry me through whatever parenting Josephine was going to be like. But actually, when you can’t hold your child because they’re in an incubator, or comfort them because the force of their spasticity pushes you away, you can’t use those natural instincts – they don’t work. You’re left trying to find a different approach, and it doesn’t feel like parenting, like being a “mum”.

At the beginning you’re just trying to work out what to do to get through the next hour. It’s hard, and very frightening as a new parent. But you go through what you have to. You have to get on with it. Your only alternative is to say, “Well, I’m not going to look after my child.” And that thought never entered my head.

Sense was a place that cherished our children

In the early years, we learned an immense amount through the Sense Family Centre at Woodside. All the professionals we met there were unbelievable. They just… they learned her. And they learned her alongside us, so we shared things with each other and it was a truly collaborative experience.

Raising a child with complex disabilities is all about collaboration, being part of a team. Woodside fostered that; us parents were all very supportive of each other. We were all relieved to be in a place that accepted and cherished our children.

Music was an integral part of our sessions with Sense. It was a time I made the biggest emotional connection to Josephine. When I reread the chapter that I wrote about Woodside, I could recall just what it meant to us. It was a place of solace, a place of comfort – though of course it was very intense, but magical. It made her life better.

Finding a way to live in the moment

It’s very easy to focus entirely on the person who has complex needs, and to forget about other people’s needs – or your own needs. And that can go on for many, many years.

But taking care of yourself is essential, otherwise your child won’t get what they need because you’re on your uppers. It’s about looking after everybody. At Sense people would say “What about you?”

I lived in a world of perpetual fear for many years. I was always waiting for the disaster. I could never live in the moment. That’ll resonate with a lot of parents. The nature of the joyful moments is that they’re fleeting, and they’ll be followed by more difficulties. So being able to cherish those moments of impact and joy, even when you know it’s only going to last for a minute, makes all the difference.

I think it’s probably a common thing for parents to have some level of PTSD after a traumatic birth. For me, getting Eye Movement Desensitisation and Reprocessing (EMDR) therapy made a huge difference. If you’re thinking about going down this therapy route yourself, make sure you’re in the hands of a qualified professional. Once I started my recovery, I started to reconnect with myself and be more present with Josephine.

I found I had a daughter with a distinct personality, who loved music and company and chat. We loved our wee girl deeply. I spent Josephine’s lifetime trying to do what made her happy, but this competed with the emotional pain and suffering I felt as her mother. ‘Can I Speak to Josephine Please?’ is a reminder to anyone touched by similar experiences that parenting a profoundly disabled child is no less – and, perhaps, no more – complicated than parenting a “normal” one.