For Christina Wilson, 45, from Sutton, south London, this is the job she didn’t apply for. Here she reveals the challenges and joys she faces as a single mum to a disabled child
‘Rhianna was a happy little baby, sitting up by six months, saying ‘Mamma’ at eight. But a month later, I noticed she had a squint. Then her sister Francesca was born when Rhianna was 14 months old, and even though I was a single mum, our little family felt complete.
Then my happy, smiling girl started to scream and cry inexplicably. Her arms were black and blue where she bit them uncontrollably. I took her to the doctor, hoping it was nothing serious. But the news was worse than I could have imagined. Rhianna had suspected Rett syndrome.
A frantic Google search filled me with terror. Words flashed in front of me: ‘disabled’, ‘unable to walk’, ‘unable to talk’. I couldn’t take it in.
Slowly, Rhianna began to regress before my eyes. I can’t put into words how painful this was.
By the time she was officially diagnosed at two and a half, following a raft of tests, she was in a wheelchair and could no longer speak or feed herself. Rett syndrome is a neurological disorder of the brain, which leads to stunted growth and frequent seizures, and almost exclusively affects females. Rhianna will be reliant on me my whole life. But her smile still lights up my days.
When things are particularly hard I can pick up the phone and call the charity RettUK. They have helped me through my worst days – like the soul-destroying moments when friends’ children reach milestones such as their first steps or first sports day, which I know Rhianna, now 13, will never achieve.
The incredible staff at the charity reassure me when things get on top of me and I feel close to breakdown. Because I can’t break. It isn’t an option. Who would pick up the pieces?
One of the problems associated with Rett syndrome is osteoporosis that leads to brittle bones. Rhianna can’t talk, so she can’t tell me when she is in pain. But her bones could break at any time if I don’t handle her carefully. I use a hoist to lift her in and out of her wheelchair or help her have a shower every morning.
My respite carers need to be given three months’ notice if I want to do an activity with my other daughter Francesca, like a holiday or even a trip to the cinema.
Rhianna attends a special school for seven hours a day and has a carer for two hours, three times a week. She goes to an amazing respite centre, Cedar Lodge in Sutton, for 50 nights a year and recently a private hospice called Richard House in east London has started allowing her to stay for longer periods to let me and Francesca have some time away together.
When I close my front door after Rhianna leaves for school, sometimes I feel like I want to melt into the ground. Then I pull myself together. After all, I have another daughter who never makes any demands. Francesca adores her sister and sings to her and washes her when I’m under the weather. But she needs me too and I can never forget that.
Some evenings I’ll be up at night for hours with Rhianna because she can suffer from bad cramps and cries with the pain. I have a baby monitor so I can listen out for her at all times. Plus, as a mum I always sleep with one ear open. I know if she so much as blinks, even though she’s in another room.
I can’t chat to Rhianna in the same way I do to Francesca. Because she can’t respond, I speak to her as if she’s a small child rather than a teenager. If I were to ask her where her toy is, it would be two minutes before she’d respond, then she’d look at it slowly. But she’s astute and if I have my hair dyed, she’ll notice and react with a surprised expression. She knows her own mind, so at breakfast, I hold up cereals so she can point with her eyes to the one she wants.
I kiss Rhianna all the time, but hugs are rare because of her spine problems. She weighs 7st 3lb and is unable to move any part of her body to get dressed, so even lifting her head to put her T-shirt on is a mission. I’m grateful to whoever invented the poncho! Her chair takes lots of strength to manoeuvre – I’m surprised sometimes at how much power there is in my tiny frame.
Fighting for Rhianna’s rights is almost a full-time job. After years of pushing to get her the best care, I know everything there is to know about local authorities and all their quirks – as well as when and how to apply for funding and equipment. I’m currently appealing a proposed cut to our respite care. It makes me furious that other people control what we’re entitled to. And the length of time it takes to approve funding because of the red tape is ridiculous. I spend hours on the phone chasing up people and applications.
When Rhianna was first diagnosed in 2002, the house was suddenly full of strangers assessing her condition and deciding what lifts and hoists we needed. It was hard, but I knew it was essential to get the best possible care for my little girl – like her three-floor lift and electric bed. I’ve become an expert in technology, despite it never being my strong point.
People do stare at us when we’re out and Francesca used to cringe when, in the middle of Pizza Express, I’d start singing songs from Grease to stop Rhianna crying. But I know that five minutes of embarrassment is worth it to see Rhianna’s tears turn to laughter. I play silly games with her like throwing bits of rolled up tissue at her to the count of three. I’m known for being a bit crazy, but it gets you through!
While my life is stressful, I have two fantastic daughters with hearts of gold. Francesca is beautiful, patient and funny, while Rhianna’s giggle is so infectious and her smile lights up the room. My heart swells with pride at the sight of them.
If I’m honest with myself, I know that Rhianna will be lucky to make it to adulthood. And knowing that my daughter might die before I do is devastating. I just take every day as it comes. Apparently researchers are close to finding a cure for Rett syndrome, and while it might not happen in Rhianna’s lifetime, it’s still a reason to hope.”
A day in my shoes
7am I get up with the girls, put Rhianna into her wheelchair then she takes the lift up to the kitchen for breakfast. Rhianna has a great palette and enjoys food. She loves to eat her breakfast with Francesca, but feeding her is time-consuming.
8am I put Rhianna on her commode to go to the loo, then she has a shower. This can take a long time because since she had an operation to correct the curvature of her spine, she can only be lifted by a hoist in order to protect her bones. I dress her, which is tough. It’shard physical work and I have to be careful because she can easily fracture her bones.
9am On weekdays she’s picked up for school in a specially adapted school bus. She goes in her wheelchair while Francesca walks to school around the corner.
10am-4pm “My” part of the day revolves around arranging hospital appointments, organising funding, taking the dogs for a walk, doing the washing and cleaning and then taking Rhianna to any hospital appointments she has. In the last few weeks alone she’s had 10, so it takes up a large part of my day.
4pm Francesca and Rhianna get back from school. It’s important that we enjoy a home-cooked meal together, and I feed Rhianna in her specially adapted chair.
7pm Rhianna watches a DVD on her bed, and Francesca and I spend time together.
8pm Rhianna goes to bed.
9.30pm Francesca goes to bed.
10pm Rhianna wears an incontinence pad to bed and I change her before I go to sleep. Then I let the dogs out, tidy up and by 10.30pm, I’m exhausted. I fall asleep, and prepare myself for starting it all again tomorrow.