Living with a disabled child

I was staying with my mum in Radlett when Liora had her first seizure, aged just nine weeks old. She was in her little cot when suddenly her face pushed itself all to one side, her features weirdly scrunched up.

“I think we’d better call an ambulance,” I said. Liora’s face went back to normal after nine minutes, but the ambulance still whizzed us to Watford General Hospital. The doctor wore a kippah, which I found reassuring.

“We need to give her a lumbar puncture to make sure she doesn’t have meningitis,” he said, holding out his hands for my baby. I held her harder. “I’ll carry her.” He shook his head. “Parents aren’t recommended to be in the room.” Now, I’m a hardened hospital mum and I would never abandon her, but back then I just did as I was told.

My baby had 45 minutes of agonisingly painful puncturing, while Mum and I held hands tightly in a room just down the corridor, where we heard every terrified scream. Dr Kippah brought her back and told us she didn’t have meningitis. He put her on a cot and I leaned towards her, breast at the ready. She opened her eyes, looked at me, and smiled in recognition. It was at that moment I realised what kind of a person was this baby, who had come out of my body. Light, like her name, a baby who could endure agony, away from her family, at nine weeks, then smile.

She is still that person. She had more seizures, then more. Her first Chanukah was spent in intensive care with a tube down her throat. Next to her face was a little black and white toy dog I’d drenched in breast milk in case she could smell it from the depths of drugged sleep. By the time she was four months old, she had been in intensive care three times, risking death every time. But somehow she survived. Her light kept shining.

 

 

In nearly 11 years, I have learned that special-needs parents are part of a strange sub-culture. We exist in a parallel world to that of normal parents. It looks similar but it’s not. Our children remain babies, in that we need to care for them round the clock. When exhausted new mothers with normal babies complain about how they can’t do anything any more and how knackered they are, I know their chronic exhaustion will gradually ease off, that they will be able to resume their working lives in some form, that their children will have sleepovers, friends to play with, that they will say “yes please” to that girl over the road who wants to earn some babysitting cash.

They will sit and chat over coffee while their children play in parks and gardens. They will send their children to the children’s service on Shabbat, so that they can stand silently during the Amidah.

Our first carer, a professional, highly recommended, lasted a week. She came to me in tears, saying she couldn’t bear to see a baby suffering and she would have to leave. We felt totally alone, in a dark place. How could we ever resume anything like a normal life if not even a childcare expert could stand being with our epileptic angel for four hours a day? I felt rejected, bruised, angry.

Ten years later, the situation is largely the same, although we’ve had some wonderful carers who, while they’ve struggled to cope with seizures, have become like extended family. It’s still like having a baby with round-the-clock care as special-needs children don’t need as much sleep as we do, Liora’s usual getting up time is 5am, seven days a week, and that’s after we’ve got up more than once at night to meet her needs. You can’t put the TV on for her and go back to bed.

Liora has an autistic behavioural pattern causing her to drink one drink of water after the other like some adults chain-smoke — we joke that she needs to go to Aquaholics Anonymous — and wets her clothes, sometimes once an hour. She needs medication every two hours. For a year, we tried a radical epilepsy treatment called the Ketogenic Diet, following direction from Great Ormond Street. It’s like an extreme Atkins where the child is put into starvation mode, only 20g of carbohydrate per day and massive amounts of fat to keep her healthy. We had to weigh every single thing that went into her mouth and constantly calculate the amounts, we had to make her bread and we had to deny her food when she was hungry. In the end, the poor quality of life wasn’t worth the minimal seizure reduction. It was wonderful to see Liora’s joy at eating normal food again, particularly her favourite — fish balls.

Liora loves horse-riding and we just don’t think about what would happen if she had a seizure during a ride. She likes swimming and having a bath and she loves watching birds fly across the sky. She laughs a lot and she can now differentiate between FOOD and DRINK pictures.

She needs something in her hand, a stick or something to twiddle, which helps her survive in a world full of noises and sights that she doesn’t understand, although people stare at her constant twiddling. The autism label doesn’t bother me and I hope it brings us more support. She’s still my beautiful girl.

Support is our main issue. Our daily life is still severely limited because of Liora needing full-timecare, and our chronic baby-years type exhaustion dominates our lives. I loved my work as an overseas aid communications specialist but, like most parents in our situation, I’ve had to more or less give it up. My husband Rahul can work only part-time, which dramatically compromises our finances. We can’t share who we are — or were — with Liora, we can’t travel to remote places in vastly different cultures or go to festivals. It’s hard to care for her outside the home and we need to call 999 quite often.

Our last break was in 2014, when we went to Istanbul, it was meant to be for three days but on day two we were called home as Liora had gone into intensive care at Great Ormond Street.

We get six hours a week care from social services, plus three from Barnardo’s. We are eternally grateful to the wonderful charity Camp Simcha, which helps families like ours in many different ways, giving me the wonderful Joanne to lean on emotionally, paying for therapy to support our family and taking us, with many other families, to a posh hotel, skilled carers paid for, so we get time away from the kids to be spoiled with massages.

But imagine the summer holidays! Imagine half-term! When we are functioning on three hours’ sleep, when we walk down a street with Liora banging her head on every shop window. When everyone on the bus is staring at her because she’s making weird noises, possibly smearing hummus all over the window, me, her hair.

When you can’t go to the cashpoint machine as she will run away while you tap in your code, when you can’t sit down in the park if you are tired because she will run away, when you can’t go to the loo or buy a coffee because you need to care for her. When tomorrow will be the same, and every day until she goes back to school.

We moved to Brighton as a substitute for the travel we used to love, because if she’s sick we can see the sea from the hospital window, not just the North Circular. We’ve just been told we will get one night’s support every other week, when a place in a residential centre comes up, which seems like unimaginable freedom, even though we are scared of how our little girl is going to manage without us. The waiting list for our one night’s respite is five years.

Liora is still my light. She makes it clear she adores me, and unlike some autistic kids, she’s very touchy-feely, which is a blessing.

We have cuddles and kisses and giggles every day and I don’t think she will get to that teenage stage of not wanting to be kissed in public.

Yes, I do put a good face on things. Yes, I do feel devastated that I can’t have a conversation with her, that my world is so narrow, but I am still a happy mummy, with love and cherishing and a gorgeous child in my life every day.

I am determined that Liora will have a batmitzvah. If we’re lucky, she will spend it sitting in the corner watching The Wiggles and The Tweenies with a carer, exactly the same DVDs she’s been watching since she was three. If we’re unlucky she might be banging her head on a wall and need to be taken out of the room.

She will have no idea what it’s all about and may not even be present if she has a seizure.

But I want to honour her years, her journey, her life, through photos and film, with family and friends. It’s bound to be a tear-jerker but, despite everything, she will still give me naches.