Eddie

“My name is Catherine and I am the Chief Executive of the Peter Pan Centre but I am also mum to Eddie, a Peter Pan graduate who had an amazing start in life thanks to four years of care and support from the Peter Pan team. I have the best job in the world, helping to spread the word about the fantastic support available to disabled children across Stoke, Staffordshire and South Cheshire from this gem of a charity.”

Having a baby should be one of the happiest times of your life.

But when my long-awaited and longed-for baby was born with a serious disability, the happiness I felt was overwhelmed by fear and anxiety. I hadn’t expected this. I wasn’t ready for this. I knew nothing about children with disabilities. Eddie was born in 2013 with Down’s syndrome. He spent 3 weeks in neonatal intensive care.

I wasn’t ready for that.

Eddie came home for the first time at 3 weeks old. The very next day we had to be at Manchester Royal Eye Hospital to discuss surgery to remove bilateral congenital cataracts causing his near-blindness. Following surgery at 10 weeks old, Eddie then had to wear daily disposable contact lenses for 6 months to correct his vision. Imagine having to put contact lenses in a baby every day?

I wasn’t ready for that.

The next day, our first proper day at home as a family, we were visited by a Physiotherapist and a Speech and Language Therapist. It felt like an intrusion. I wasn’t ready for that. Maternity leave was a whirlwind of medical appointments, hospital visits and ambulances. Other services became involved in Eddie’s care, services I had never known existed like Occupational Therapy and Portage.

I wasn’t ready for that.

To try and keep some semblance of normality, Eddie and I ventured out to baby groups. We were welcomed with open arms by other parents but I couldn’t help but notice the increasing differences between my child and theirs. I couldn’t join in with conversations about first smiles, first babbles, first words, first foods, first steps. Eddie wasn’t developing like other people’s children.

Then we found the Peter Pan Centre.
At the Peter Pan Centre I realised that it was OK that Eddie wasn’t developing like other children. That he’d get there in his own time. And I learnt that it’s OK to be not OK with that sometimes. And that there are tea, biscuits, tissues and a shoulder to cry on there if you need it.

At the Peter Pan Centre I met other families going through similar journeys to us. We made a new support network and friends for life. Friends who ‘get it’ and who have ‘been there’ and who are with us every step of the way on this journey none of us were expecting.

At the Peter Pan Centre I learnt how to help Eddie learn and communicate. Eddie developed an amazing bond with his keyworker Michelle, whose care, patience and expertise allowed him to flourish.

The team helped us navigate the overwhelming and complex work of Special Educational Needs, advocating for us at meetings, offering advice, leading on Eddie’s Education, Health and Care Plan and securing our school of choice.

And in the middle of all this was a happy, content little boy who didn’t know all this was going on around him, for this was his life. And Eddie loves life! Eddie was born ready and Peter Pan gave him the best start in life. And they helped me get ready for my new life as mum to a child with a profound and complex learning disability.”

Catherine, Eddie’s mum