“I struggled to come to terms with what Ruby’s life might be like”
It’s National Family Week this week and to celebrate we wanted to share the story of one of the families that we’ve helped to support. Here’s the story of Kerri, proud mum to Ruby.
“My daughter Ruby is three years old and has been diagnosed with septo-optic dysplasia, which is a disorder of early brain development. She has been completely blind since birth and is also developmentally delayed.
Ruby is my first daughter so this is my only experience of bringing up a child, but I try not to treat her any differently to how I would any other toddler. I’ve had to learn different ways to play with her though that are more focused on sound and it can be difficult as she’s not able to sit up, but that’s where Henshaws have made a massive difference, in helping me to support her.
I first came to Henshaws’ Liverpool Centre in 2011 when Ruby was just a few months old. I was incredibly scared at that point and felt really isolated, but it was a huge relief to find Henshaws. I had no idea what to expect from Ruby’s condition and felt very anxious about it all. I really struggled to come to terms with what Ruby’s life might be like and at first meeting other parents with disabled children at Henshaws upset me because I hadn’t been around disabled children before. It took me some time to come to terms with the fact that this was the sort of support me and Ruby needed.
It’s still very difficult but I’m definitely starting to come Ruby to terms with things and I know I couldn’t have done that without the support of the staff at Henshaws.
They have supported us with lots of practical advice but it’s the emotional support that has made the biggest difference to me, the staff have been amazing and I can’t thank them enough. We attend the Parent and Toddler Group every Tuesday morning, where we play with all the special toys and we borrow some to take home as well. We also go on the extra activities they organise in school holidays, which we both really enjoy, such as going to Drayton Manor.
I think I’ve gained a huge amount from these events, not just getting out of the house more with Ruby but seeing how other families cope with disabled children has given me real hope and confidence that Ruby can have a happy future.”
As part of our Pathway to Independence we support families where the child, parent or carer has sight loss, and we support other family members too.