It was just an ordinary day when Janie was driving along and all of a sudden she realised she was struggling to see properly.
‘Everything just looked so blurry,’ Janie remembers.
And when she went to see an eye doctor in 2014, she was diagnosed with keratoconus. A progressive eye condition resulting in the thinning and reshaping of the cornea.
But there was more…
‘They told me by the time I was 30 I would be totally blind,’ she adds.
It was a huge shock.
The doctor had never treated a patient with it before and referred her to a specialist. But Janie’s sight continued to deteriorate. She could still see colours, but not shapes or details.
‘It’s like being a drunk person,’ she reveals. ‘Like you see [in] the movies, how they have double, triple vision.’
Janie was legally classified as visually impaired. But one thing was for sure, Janie wasn’t going to let her sight hold her back.
She found ways to live with her deteriorating vision. Like in the kitchen, she put stickers on the hob, helping her differentiate between the buttons.
Although it helped minimise the risks, Janie admits she has burnt her hands a few times over the years. It hasn’t stopped her though. Janie has never been one to give up. When she found out she was pregnant, she was undeterred. She’d always wanted to be a mum, and her sight loss hadn’t changed that.
How it started
When Ali was born in 2020, single mum Janie did everything she could to keep them both safe. Her biggest fear was that she’d accidentally tread on him. So when he started crawling and toddling about, she put knee and elbow pads on him, with bells on. That way, wherever he was, she’d know.
But as he grew, Janie started noticing things about her little boy. Whenever he got angry, he banged his head on the floor.
Janie sought advice. And at around 18 months old, Ali was diagnosed with autism.
‘When I found out, I bawled,’ Janie says.
The tears weren’t sadness about the diagnosis though. More about her fears as a mum, and whether, as she lost her sight, she’d be able to give to Ali enough support.
But she researched autism and found out everything she’d need to do. Ali didn’t start talking at the same time as other babies. Making it hard for Janie to communicate with him, or know what he wanted.
When she realised that there were no suitable schools that met his needs in the area, she decided he’d be homeschooled.
And when the time came, Andrea and Megan came on board. As behavioural therapists, they spend time with Ali. Doing different activities, helping with his development.
At home, Ali has a special bed that he’s zipped into every night, a bit like a tent. It keeps him safe, and means Janie can get a good night’s rest too.
Now Ali has also been diagnosed with ADHD. And there’s a chance that he’ll develop the same eye condition as his mum. That’s one of the reasons Janie is making sure he learns Braille too. Another way to communicate.
Janie does everything she can to be the best mum to Ali. But sadly, some outsiders think otherwise.
‘I get a lot of stares,’ Janie explains.
Sometimes people think she’s pretending to be blind
Strangers come up to her, waving their hands in front of her face. As if they’re trying to test her, catch her out.
Online, people question whether she’s able to take care of her son. What if he runs? they ask.
But of course, Janie has that covered. She takes extra precautions, using a harness when they go out. Making sure Ali is safe and always close by.
But one of the most shocking incidents was when she went to the doctor once with Ali. Leaving the clinic, she walked a few steps behind him. In one hand, she was holding on to the harness he was attached to. In the other she held her white cane.
As Ali yanked on the harness, keen to walk faster than his mum, Janie’s cane moved from side to side. Then, before she knew it, a police car appeared.
The officer told Janie that he’d got a call from someone, reporting that she was hitting her child. She explained she was blind, that she’d just been taking her son to the doctor.
‘He felt so bad. He didn’t know what to say,’ Janie explains.
But she doesn’t let the judgement bother her. If anything, it makes her stronger. More determined to be the best parent she can be. And she hopes that other parents facing challenges will take inspiration from her.
‘I would say live your best life with you and your little one,’ she says.
Janie’s got to where she is with resilience and strength. She has had to learn a lot along the way, about herself, her condition, autism and ADHD. And through it all, her positivity shines through.
Because, despite everything, she’s grateful for the wonderful life she and Ali have. And she’s excited for what the future has in store.
