3 minute read
Bright, brilliant and awesome teens
BRIGHT, BRILLIANT AND AWESOME
Julia’s House cares for many young people, helping them connect with friends, pursue studies and just be teenagers. Meet the brilliant and awesome sixteen-year-olds, Ruby and Sally.
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Ruby has been supported by Julia’s House for seven years, after we started caring for her younger sister, Elisa, who has cerebral palsy.
“The first thing I ever did was a water sports trip to Rockley. I was very nervous but I made some great friends who could understand what it’s like to have a sibling who’s disabled,” remembers Ruby. “We still message and game on Play Station.
“Having Julia’s House there has made me feel less alone. You can feel that no-one else can relate to you but they helped me understand that isn’t the case. Things that aren’t normal for others just became normal for me – I never minded if plans were cancelled if Elisa had to go into hospital, that was just my life.
“COVID was hard as I was anxious about keeping Elisa safe. I was always testing and didn’t see my family very much, especially when Elisa was in hospital. I was really scared for them.”
RUBY
Ruby has been inspired by Elisa’s care and plans to go into nursing – she’s studying health and social care at college after doing well in her GCSE’s during the pandemic. “I didn’t always find it easy to talk to people, but I love it now and have a great time at college. Julia’s House has given me the confidence to make these decisions. They have changed my life.”
Ruby with sibling worker, Maria
Ruby meets sibling worker, Maria, regularly: “It’s been really nice now I’m more grown up. Maria and I have had time to get to know each other, going for walks or chatting over coffee – I’ve found a great café with amazing brownies! It just feels natural now when she messages to arrange to meet. I always worry about Elisa, it’s constantly in the back of my mind but knowing I can talk with Maria really helps.”
“My needs are
SALLY greater than a normal teenager, and a lot of the stuff that you would do for yourself, I can’t do. I am high maintenance!” says Sally who has had Spinal Muscular Atrophy Type 2 since birth.
“It can be painful and I do get very tired, but surgeries often help. I have to have regular surgeries as my condition degenerates. I broke my leg last year and I didn’t even realise. I was in a lot of pain but put off the surgery so I could sit my GCSEs and have my last day at school. Looking back I’m not sure how I did it!
“I am studying A Levels at college and would love to study Music at university. I like to plan everything but there’s the conversation you’ll have with yourself about life expectancy; with my condition it can vary from living until you’re 20 to almost living a full life. I usually just think, ‘I’m going to die at some point, so we’ll find out when it happens.’ I can’t regret having a disability because this is just the life I’ve been given.
“My Julia’s House carers usually come on a weekend or in school holidays. Before COVID, we’d go to the cinema or go for lunch and just hang out like a normal teenager would. It’s like they’re what my body isn’t. They can be my hands when I can’t cut food, help me pass money over the counter, brush my hair – simple things like that.
“If Julia’s House didn’t exist my life would be very different. Our family wouldn’t get those breaks everyone needs.
“Sometimes I do feel sorry for myself but overall I just get on with it. Mum’s given me that attitude because you’ve got to live every moment as it comes.”
