Article written by Sally Rowe and published in the Julia’s House newletter and online at juliashouse.org
Meet the children: Samuel
“You know that holiday advert on TV where the family are made to feel like VIPs – well that’s how I feel when I take Samuel to Julia’s House.”
Zoë and her son are new to Julia’s House and her enthusiasm for it bubbles over: “I love it, love it love it! It feels so good, it IS like being on holiday.”
This ‘mini break’ Julia’s House-style means a breather from the endless slog of caring for a really poorly little boy, but more than that, the chance to be among people who just know how hard it is to find that elusive normality when your world has been tipped upside down.
Samuel has a rare genetic condition which has affected the development and formation of his brain. “It is smooth where it should be ridged and he is missing his corpus callosum, which links the two sides of his brain.”
The physical and – to outsiders – disturbing side effect of which is Samuel’s extreme seizures.
Snuggled in the crook of his mum’s arm, he looks very content. But this peaceful scene is shattered, with alarming regularity, by fits – some barely registering on the richter scale of epilepsy: a slight twitching of the eye, a flick of the head. Others go on and on, to the point where they need monitoring or he needs to be given his emergency medication.
“Samuel, come on, do I need to start counting?” Zoë talks gently, yet firmly, when, as if on cue, his body stiffens as it is wracked by stronger spasms. “Sometimes he has very good days, sometimes very bad days and everything in between.”
There is little Zoë can do apart from hugging Samuel just that bit closer as he rides out this horrible internal storm.
“The Julia’s House staff couldn’t believe it when they saw that his care plan actually includes hugging,” she laughs, “it’s true, cuddling is actually part of his protocol!
“It makes him feel safe, and also, it helps me judge his fits better when I’m holding him. The doctor’s call it ‘containment’ – I call it cuddling!”
Samuel is utterly irresistible. With his soft golden curls, big blue eyes and long, long curly eyelashes, he is really handsome boy and as such, attracts a lot of attention when out with Zoë and her husband, Chris.
“People think he’s just a very big baby, but that’s because developmentally he is, but he’s actually 17 months old.
“They say things like, ‘enjoy him now, you just wait ’til he starts toddling and getting into everything’. It’s hard to explain that this isn’t going to happen, so it’s best just to say nothing.”
“We can feel normal when we go there. The staff have seen it all before. They are so wonderful, so welcoming, so lovely. Nothing fazes them.”
Harder still, though, is when people do know the situation, but find it difficult, or embarrassing to put their feelings into words.
“People sometimes say to me ‘I’m so sorry to hear about your baby’.
Zoë is indignant: “It sounds so terrible – he’s not dead!
“We don’t feel sorry. We feel thankful. Some people can’t have children at all, but we’ve got Samuel. He brings so much joy, he has really brightened our lives.
“That doesn’t mean to say he doesn’t break our hearts now and again, but we love him to bits.”
Zoë is very animated when it comes to people’s attitudes towards Samuel. “We wish he wasn’t ill, but we don’t wish we didn’t have him.”
Samuel is all the more precious because he could well be the only child the couple ever have. For in the course of all the post-natal tests to determine the cause of his seizures it was discovered that Zoë , in some cruel chromosomal version of Russian roulette, had passed on rare gene mutation to her son.
His condition – ARX or Aristaless Related Homeobox – is passed on mother to son.
It’s so rare, that apart from the outward signs apparent in his epilepsy, no-one really knows for sure what is going on in his head.
“It was devastating to think that I was responsible for Samuel being so poorly. The doctor’s say he could be having fits all the time in his brain that we are unaware of, which really upsets me.”
A pregnancy scan had revealed that Samuel had swollen ventricles and excess fluid on the brain. Doctor’s started talking about learning difficulties.
Samuel spent lots of time in neonatal intensive care where they were given a lot of support “by the NICU angels”. But while there, the couple were told to prepare themselves for the worst. “They basically said: ‘be prepared for the possibility that you may never be able to take him home.”
Yet despite the fact he has little more development than that of a six-week-old baby – he can’t hold his own head up, for instance – it’s not thought that his condition is deteriorating.
Zoë knows that as he gets bigger, it won’t just be his beautiful looks that draw attention and she is braced for more questions, more inquiring stares.
Which is why there is much comfort in finding a place where Samuel can be accepted, welcomed, enjoyed for what he is, not judged for what he isn’t.
Zoë believes she has found that in Julia’s House.
“We can feel normal when we go there. The staff have seen it all before. They are so wonderful, so welcoming, so lovely. Nothing fazes them.
“I was daunted about my first visit, but the reaction of all the carers was fantastic. They were genuinely excited by a new child arriving. They got down on Samuel’s level and spoke to him.
“They were even vying with each other over whose turn it was to give Samuel a cuddle and when he had a seizure it didn’t scare them. They took it all in their stride.
“And all the time, those little gentle touches to reassure Samuel. Tiny gestures that only a mother would notice.”
“When I walked out of there I felt like a proud mother – and that means the world.”
To find out more about Julia’s House and the amazing work they do for children like Samuel and families like ours, visit www.juliashouse.org where you can also make a donation.