Wednesday February 19th, 2031.
'Right, are you sure you are okay to have the boys?' Tracey rolls her eyes at her son.
'Stop stressing.' Tracey tells them. 'I've looked after them before, you have to focus on Melie.' She tells him, 'It's a big day tomorrow. The boys and I will have a laugh.' She turns her head around, catching Noah's eye. 'We'll have some fun, won't we?' The boy smiles, before chasing his brother up the stairs. 'Now you need to go- it is a big day for Amelia tomorrow.' He smiles, twisting the keys around in his hand. 'And it will be getting dark soon.' She points out.
'See you Sunday.' He calls, hugging his mum. 'Bye boys be good for grandma.'
'Send my love to my lovely daughter-in-law and my beautiful granddaughter.' He nods, opening the car door.
'I will do.' He looks in his mirror, driving down the road. He can see his mum hugging his sons. He trusts his mum, but it will be weird not having the boys around, the house will be far too quiet. The drive home is long. At times, the M4 seems unending, it's a straight drive, the only thing keeping him awake is the tunes he's playing.
When he gets home, he calls out for his wife and daughter, no answer. He goes and checks upstairs, it might be Amelia's bedtime, but it is far too early for Dianne to be in bed. He has no avail in the bedrooms. Instead, he finds them in the living room, both asleep under a blanket. The fake fire is on, and the TV is on low. He stares at the pair of them, wondering how on earth he got so lucky. Dianne starts to stir, making eye contact with her husband.
He watches as she gently untangles herself from her daughter. Joe edges nearer, picking Amelia up like she used too, and carrying her to bed. He can see that Dianne had already got her ready for bed, and they must have fallen asleep watching telly. Dianne follows, tucking her daughter into bed and kissing her forehead.
'You are an amazing mum.' Joe whispers. 'I know you doubt it sometimes, but you are amazing, and I wish I was half as good as you.' She blushes, adverting her gaze, clearly embarrassed. 'I know it's hard, but you are doing great.'
'Thank you.' She breathes, her eyes glistening with tears, she pulls him in close, craving the warmth of his body. 'I love you so much, and I'm sorry I've been a bitch.' He shakes his head.
'Don't apologise.'
The alarm wakes the pair of them up far too early, Dianne getting in the shower before Joe even leaves the bed. They know they have to be up early, something that neither of them want to-do. It is the kids half term, the last thing they want is having to wake up at 6:30 to make their way up to London.
Dianne is the one to wake the little girl up. It never fails to amaze him how gentle she is with the kids, he also knows how much the small child's comment hurt his wife. That was a turning point, he knew then he had to really make an effort with helping out. He knew that she was starting to come to terms with what was happening to Amelia, this was a step in the right direction. He had done some googling, in the attempt to find something out about the condition. He also wanted to see if there was some sort of support group that they could go too, to meet other people who were facing the same thing. To try and find something that didn't make them feel so alone, so powerless, no one he knew had the condition, he was surprised to find that it was the fourth most common neurological condition in the UK, 1 in every 103 people had it. To him, it just seemed like a shocking statistic. His daughter was now one of those statistics, the ones that medical students will learn about. To everyone, she is a number, she's a number on a page. To them this isn't a big thing, when they read statistics she will just be a number. To him, this is his whole world. His life has been ripped apart, and it makes him slightly angry. He just doesn't know why.
He watches as she tries to eat breakfast, she doesn't put up a fuss, but she sort of just stares at the cereal. He gets it, it's far too early to be trying to stomach food, but she needs to try. 'Go and clean your teeth.' Dianne instructs her, clearing away the cereal once it becomes apparent the child isn't going to eat anymore. 'The come down and I will brush your hair.' The child nods, running upstairs.
'I'll load the dishwasher.' Joe tells her, as she smiles gratefully.
'Thanks. I washed her hair last night, I didn't condition it though.' He nods, not really understanding why she is telling him that. As if she can read his mind, she carries on. 'She's having electrodes put on her head, and they need to stick.' He nods, pulling her in close. 'I love you so much Joseph Graham Sugg.'
'Not as much as I love you Dianne Claire Buswell.' She smiles, an exaggerated cough brings them back into reality. 'Right mummy is going to brush your hair, and I am going to find your coat.'
Before long, the three of them are sitting on the train, watching as the scenery passes them by. Unlike the first time they came here as a family, this one isn't filled with awkward silences. Dianne presumes its because they are all starting to accept what is happening. The boys know that their sister is pretty sick, and that's why they are being passed pillar to post. Their parents both immensely proud of how well they are taking it. They haven't had any major meltdowns, or tantrums. They just get on with their life, even when it's being taken over by a strict regime. Amelia has to be up at a certain time, she has to eat at a certain time, in order for her medication to be taken. Simple tasks aren't so simple anymore, there are all these things to consider.
Joe and Dianne also thought it was a good idea to send them on a basic first aid course, learning how to deal with their sister, should something happen to her. It's better to be prepared. They are used to being passed from grandparent to aunt, and even the annual holiday to Australia has been put into jeopardy, but they are okay with it. They just want their sister better, not being able to comprehend the gravity of her condition, that things won't get better anytime soon, but it will be managed. Not that either of them will try to explain that to the boys.
Dianne is starting to understand that this isn't going away, now she has seen her daughter have a seizure, she is even able to start referring to the medication as anti-epilepsy. She is overly cautious about using that word, acutely aware of all the stigma attached to it. She's getting used to it now, she's starting to get that this isn't going away anytime soon. This will be there for the foreseeable, she wouldn't go as far as saying she is okay with that. It's more a 'I'm learning to live with it' attitude. She does worry about her daughter far more now, she isn't entirely sure if her daughter understands what is happening. She's naïve about the condition, she doesn't know the dangers. Dianne knows that she is determined to protect her for as long as she can.
As her name is called, Dianne grips Joes hand. The nine-year-old has run ahead, hopping and skipping into the room, she's taking today in her stride, she had even tried to pronounce the name of the test today, Electroencephalography. She laughed that it was a stupid word, eventually giving up and going with the abbreviation of EEG.
All the neurological tests, Amelia has been okay with. Dianne and Joe sit there, as their daughter's head is being marked with a special pencil, watching as she winces when it gets uncomfortable. They then watch as they press the electrodes on the sticky tape into her head, watching as they forcefully push them down to stick on her head. The wires sit perfectly on her daughter's hair, almost like they could be part of the hair, bar the fact they were colours. It reminded Dianne of a video she watched, where the child had the leads brushed, pretending it was her hair. It struck a chord with Dianne, choking her up slightly.
The technician makes a joke about cutting all of her hair off, Dianne forces a laugh even though she doesn't find it funny. It's not something that should make her feel sad, no one is going to cut off her daughter long locks but the idea pains Dianne.
She watches as her daughter is inflicted with tests, having to stare at flashing lights, wondering if she will have a fit. She doesn't know if she could stomach it, she's seen her daughter have absence seizures, seeing her so vulnerable always made Dianne hurt. She wondered how Joe could do it, appearing to be unphased by it. She knew it was a masquerade, but she still wondered how he was able to keep so calm, when she felt like she was suffocating. She knew she had to remain calm for Amelia. They watch as the tests tire out the child, the combination of the early start and the tests being quite demanding, she wasn't surprised at how her daughter was so tired after blowing on a windmill. Its in these moments that Dianne makes her mind up to buy her a present, for being such a trooper.
They watch as the leads are ripped out of her head, Dianne pulling the girl in close and plaiting her hair, her hair being ruined by the glue they use for the wires. Both of them know that there is no guarantee that this test will do anything for the child, they may come back negative. By definition, she is already an epileptic, she's had more than two fits. She is officially an epileptic, it's just finding more about the fits, so they can control them.
They spend the rest of the day watching TV, Joe letting the girl choose what they have for dinner. It ends with a facetime from her grandma and brothers, telling them about the exciting walk that they went on, Dianne watching her husband's grin widening, clearly thinking back to his childhood.
A/N Thought's? There is like two parts left! Also 1.7K views, that is mental! Thank y'all for reading it. Also, all the facts in this chapter (as far as I know) are true, and I've tried to portray the medical tests as accurately as possible, but just like Joe isn't a daily vlogger, I'm not a doctor.....