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A Special Relationship

A Special Relationship

The relationship between them is not what you would expect of two boys in consecutive school years. 

They don’t play football, or ride bikes or play computer games together. They don’t joke about their school teachers or laugh about things that have happened on the playground. 

They don’t argue or fight nor do they spend hours whispering and giggling when they should be going to sleep.

Each year, as Sean has got older and more mature, Hugh has stayed resolutely at the new-born infant stage, his understanding of the world never passing that of a 6-month-old. 

The cognitive gap between them growing ever wider. 

Yet the relationship they do have is special.  Hugh responds to Sean in a way that he doesn’t to anyone else.  Without fail Sean can calm Hugh when he is angry or sad or scared.

He’ll snuggle up beside him, be that in his bed, or in hospital, or in his bean bag in the living room and Hugh’s face will light up when he hears his voice.

Hugh too provides immeasurable comfort to Sean. We say Hugh has magic hugs, you can’t help but be comforted by them.

And when Sean has argued with his mates at school, or is in trouble for some misdemeanour or other, he’ll sneak in beside Hugh and whisper his problems to him.

And Hugh, with his calming aura and his soft, innocent face will listen without judgement and smile all his troubles away.

There are some worries that Sean doesn’t share with Hugh though. These are the worries about the future; about Hugh’s future.

With sobbing tears, he whispers them to me after another sudden hospital admission and I’m heartbroken that I can’t promise him it will be OK.

At 9 years old he carries on his shoulder the fears, worries and responsibilities that an adult would struggle with.  Fears, worries and responsibilities that this adult does struggle with. 

In the last six months alone, for example, he has watched me resuscitate his brother 7 times, he has called the ambulance once and has tried to do mouth to mouth on his brother himself. 

I think it’s worth repeating, he is only 9 years old!

There are over 700,000 Young Carers in the UK, according to the Carers Trust. 

Young Carers are anyone under the age of 18 helping to look after someone in their family, or a friend, who is ill, disabled or has a drug or alcohol problem. 

January 25th is Young Carers Awareness Day and aims to raise awareness of the difficulties that Young Carers face.

Sean is a Young Carer for his little brother; he helps with Hugh’s tube feeds, he helps me lift him, he helps wash him and get him dressed. 

Sean helps carry out Hugh’s physiotherapy programme, he helps support Hugh’s airway when he is choking and, despite absolutely hating the sight of vomit, will help catch Hugh’s sick when his reflux is bad. 

Sean watches Hugh like a hawk and checks that he is breathing, he spots seizures and will shout for help. 

He knows not to just call ‘Mum’ – that could mean anything from ‘there’s no toilet paper’ to ‘there’s somebody at the door’.

No, if there’s a real problem he shouts ‘Hugh needs help’ and I’ll come running. 

We don’t force these responsibilities on him and I frequently tell him, it’s not his job, but he takes on that role regardless. 

I’m proud of how well he copes with the challenges and how extraordinarily selfless he is, but I confess it nearly broke me to see him begin mouth to mouth on his brother while I was getting the oxygen ready. 

The Carers Trust points out that being a Young Carer can have a big impact on their life as they grow up. Being a carer can affect a young persons, health, social life and self-confidence. 

It can cause them to be bullied or to miss time off school. In one survey, 48% of young carers said they were stressed because of their caring role.

I don’t want Sean to be at a disadvantage because of his brother’s complex health needs. 

We ensure he has plenty of time to pursue his own interests (mainly football) and, even when Hugh is in hospital, we try to keep things as normal as possible for him so that he doesn’t miss the things he enjoys. 

His school are aware of his caring responsibilities and the very unique challenges he faces. 

They have been a great support and I always inform them if Hugh is in hospital - I would hate to think that Sean was worrying about his brother and then getting in trouble for not concentrating. 

I know he does worry at school – there have been times when he’s heard an ambulance at playtime and worried that it was for Hugh (we live right beside the school), but I know and he knows that there are people there that he can talk to about his worries if he needs to. 

He attends a sibling support group through the local children’s hospice so he can mix with children who have a similar home life and he’s had 1:1 support from the Young Carers group Spurgeons and attends their fun days too. 

I hope that having all these elements of support in place for Sean will help him cope with his role as a carer as he grows. 

Sean doesn’t see himself as a carer. He sees himself as a big brother.  He’s never known any different. For as long as he can remember there’s always been him and Hugh.

And Hugh’s always been the way he is.  There have been some occasions that Sean has wished Hugh could play football with him but there have been many, many more where he’s told me he wouldn’t change a thing about him. 

Through blogging and writing about my two boys, I’ve had the pleasure of a number of people contacting me to tell me about their own relationship with their disabled sibling. 

Often, they bring tears to my eyes – the love and pride in these messages always stands out. 

Far from being a negative impact in their lives, the relationship with their sibling has enriched their lives and inspired them.  I think Sean would say the same about his brother.

And to leave you with one final thought – just recently, Sean was at a friend’s house where he watched two brothers get into a rather spirited fight. 

After which, he commented to their mother – ‘I’m glad I’ve got a brother like Hugh, we never fight like that!’ 

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Emma Murphy

Meet Our Blogger

I’m a special needs teacher and Mum to two young boys, the youngest of whom has a rare genetic disorder called FOXG1 syndrome and severe epilepsy.

View Emma’s Profile

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