My daughter Elise was born prematurely and it was the worst time of my life. The doctors didn’t think she was going to make it but she did. I remember the first time she opened her eyes. After a month of being in hospital, we got to take her home and I was so happy.
The doctors said there hadn’t been any brain injury but she wasn’t developing as expected. So, after lots of meetings and nine months of waiting, we finally got a diagnosis of cerebral palsy, just before Christmas 2016.
I felt really alone
It was really overwhelming. I didn’t have any experience of disability and I thought it meant her life was over before it had even begun. I thought she’d have no future. I tried to be cheerful for her but my heart was breaking.
I didn’t want people to come over because I didn’t want questions. The first time I took her out in her wheelchair, I cried. I felt like everybody was staring at her. I had days where I just wanted to give up and lock us both away from the world.
That’s when I found out about Scope.
I’d been missing all the positives
I wanted to do everything I could for Elise so I called Scope’s helpline because I didn’t know where to start. They gave me so much information. I found out about what was available to us and the different equipment we could use. All these things have helped make life easier. But most importantly, Scope gave me so much hope.
They completely changed my perception of disability. It’s been a whole new life to get used to and I was just focusing on the negatives. Scope helped me to focus on the positives. I’d been missing them all.
You’ve just got to change the goal posts. Elise waving was a massive thing for us and, with her physio, she’s really building her strength up. She’s just got her Peppa Pig wheelchair which she loves and it’s given her so much independence – maybe too much as I recently found out in Asda when she kept wheeling off!
I’m determined to change the world for Elise
I still worry every day about Elise’s future. I worry about people’s attitudes, I worry that she’ll want to join in with things but she won’t be able to. The world puts up so many barriers and you don’t realise it until you’re in that world. And it is a different world.
I’ve been sharing our story this past year and I want to keep going. I feel less alone knowing that there is a community out there and people who care, people who’ve been in this situation.
We’re in a much better place this Christmas but life is still much harder than it needs to be. There should be more support but there’s not and accessibility is a big problem. Just because you have this diagnosis, doesn’t mean you don’t deserve a chance.
This year I want to keep changing attitudes about disability, I want to make things more accessible, I want to give Elise everything she needs – I’m determined that nothing’s going to stop her!
I started a Facebook page called Elise Smashed It. I want everyone to see what an amazing little girl Elise is. I hope it raises awareness and changes perceptions about disability. I want to help other parents too and show them that there is hope. It might not be the life you were expecting, but it’s not the end – it’s just the start of a different life and you’re not alone.
These are my goals and that’s what I’m going to focus on this year. I hope you’ll join me.
Too often, disabled people and their families struggle to access the support and information they need. Attitudes towards disability can be a problem too.
I'm sharing our story because I want to change that. Please help by getting involved with Scope's Now is the Time campaign.