New Year, New Avenues

With Oliver turning 4 this year, we are soon to be hitting the school avenue.

Just saying that puts butterflies in my belly.

Never would I have imagined I would be sending by little boy off to school soon. When they say time flies, they sure mean it…

Our avenue comes with a little more turns and stops than for others. Oliver is a full time wheelchair user, and we do have to Cath him every three hours.

When he was younger, we attended therapy through ECI (early childhood intervention). At three years of age, they assist and help you over to public schooling, if you choose to go that route.

I wanted to home school Oliver the first year after leaving ECI until he was four and now here we are.

I want Oliver to have that social experience and make friends, and exceed to the best of his abilities.

So we have scheduled ourselves an appointment for the beginning of this month, in which they will evaluate Oliver to see what programs we can qualify for, through the school district.

These could be programs which allow Oliver to go to school for a couple hours a day, get a head start on a few things or even be placed in a certain classroom with other children whom may have delays in any area.

We do not know entirely all that is offered, but that is what we are setting out to see. With public schooling, my fear was just throwing Oliver into school and being away from home.

We never put Oliver in day care, and that was not just because of his diagnosis, but also because I had the ability to stay home with them.

This unfortunately left us with little socialization with other children his age.

It was tough already when we would go on mommy play dates, because after so long, the children who crawled with Oliver went on to walking and he could not keep up.

Now when his older brother’s friends come over, I see the desperation and need to want to go and play with them.

Luckily, they are older and at an age to understand his disability and they take it a little slower for him to play with.

We have been blessed in many ways, siblings included, and want the best experience for Oliver with schooling and meeting new friends of all abilities.

We just hope it can be provided through the school district for us and ultimately, for Oliver.

Stop Comparing

Parenting a child with special needs isn’t a competition.

None of us will be preparing an acceptance speech to receive our trophy for any of this.

None of us will be handed an oversized check written in our names any time soon.

I cannot tell you how many times I have witnessed the “one upping” on special needs pages on social media or in group conversations with other moms.

I know I’m not alone in this, which really is so sad.

I have had conversations with other parents who have told me that they have been made to feel as though they aren’t doing enough because another mother is doing more.

Or the stresses they are feeling aren’t big enough because someone else has it worse.

What exactly is worse?

What is enough?

It’s all relative and individual so please stop comparing.

These social media pages are meant to be supportive. These mom groups are supposed to be a safe space for parents to get advice or share experiences.

As a group of moms who are living lives that are different than parents of typical kids we need to stick together. We shouldn’t be divided.

Aren’t we supposed to lift each other up instead of tear one another down?

We should be fist pumping and giving one another high fives any chance we get.

Can we stop comparing and competing? No one wins.

This life is hard enough.

A good friend once said “hard is hard.” Isn’t that the truth?

One person’s hard is their hard. One person’s busy is their busy.

More doesn’t mean you win.

More appointments. More diagnoses. More surgeries. More sleepless nights. More fights with the county, school, or medical professionals. More specialists.

I don’t care if your child has one specialist or ten; it’s all hard.

Having a child who struggles with health issues or developmental issues is hard.

Having a child who you are constantly worried about is hard.

Fighting for your child to have the best life possible is hard.

Sometimes just getting out of bed is hard.

As moms we shouldn’t have to feel that we can’t share our experiences with other moms because they may seem “less” to another. No one should ever feel like their child’s struggles are not as bad as others.

I know that you lay awake at night worrying.

I know you have shed tears wondering what your child’s life will be like.

I know you wonder if you really are doing enough. The very last thing you need is someone else saying they have more.

We are all dealing with MORE.

It’s not a competition.

No trophy.

No ribbon.

The only more we should be doing is showing more love and support. We all deserve more of that.

Thought for the Day

Words are a mixed blessing.

Some can really resonate, a quote from an author, a word of scripture from a holy book.

Some can irritate.

Some are just plain wrong, I’m pretty sure that Winnie the Pooh didn’t make the, “I have a dream”, speech, and the things that Oscar Wilde, “reportedly said”, well, just don’t get me started.

Hand in hand with this come the helpful little phrases people choose to share with parents of children with additional needs.

Most of this comes from the right place, although, “God only gives special children to special parents”, should be shoved somewhere else altogether.

I have compiled, for your reading pleasure a short summary of some of the most common.

You probably have some favourites of your own.

If any come to mind that help you/make you want to punch somebody please get in touch!

Don’t sweat the small stuff, and it’s all small stuff.

In parenting a child with disabilities, as in life generally, this is not entirely true.

We brush up against mortality, severe illness, pain and struggle on a regular basis, plus the big questions of faith, meaning, love and loss.

It’s not all small stuff.

Whether you have enough likes on your Facebook Page, if you have sent a birthday card a bit late, if your house is a bit untidy this, my friend, is the small stuff.

You have my permission not to sweat it.

What doesn’t kill you makes you stronger.

This has always been one of my favourites.

However, now I wonder whether to replace it with, “What doesn’t kill you makes you exhausted, sleep deprived, clinically depressed, the possessor of a fierce and dark humour, snappy and reliant on alcohol”.

Self-care suggests the first reading is preferable.

On the days where the second is more accurate be kind to yourself.

Which brings us neatly to:

Be kind for everyone is fighting a hard battle.

You my fellow parent, if you care for a child with additional needs you are fighting a hard battle.

The person who has parked in a disabled space with no badge, I have less sympathy for.

The Local Authority responsible for providing care and support for you, your family and your child?

Well, they are paid, and should be working on your behalf.

For most special parents this could be adapted to Be Kind for everybody is fighting a hard battle with the Local Authority.

It shouldn’t be accurate but there we are.

What cannot be cured must be endured

Must it?

Well in reality yes, and emotional resilience, the ability to bounce back and keep on keeping on is useful tool in the special parents armour.

I would argue however that you need to find people who get you, family friends, parents in the same position, so you can endure it with a better grace together.

It may be that you can (whisper it quietly) even enjoy it!

I will leave you with my current personal favourite, which happens to be biblical but I think describes us, our children and our struggles well no matter what beliefs we do or do not have.

But we have this treasure in jars of clay,

to show that the surpassing power belongs to God and not to us.

We are afflicted in every way, but not crushed; perplexed, but not driven to despair, persecuted, but not forsaken, struck down, but not destroyed.

(2 Corinthians 4:7-9; The Bible)

As I frequently find myself perplexed, despairing and feeling forsaken this curiously helps me.

Despite all this I am a treasure in my 47 year old body, as is my beauteous daughter in her tricky, muscle weakened, wobbly, treacherous, one.

We are all the same no matter what our abilities or disabilities and that,to me is rather wonderful.

The Importance of Family

I remember also always hearing how important family is and that actually… nothing else really matters other than the ones you love and the ones who love you… this extends to close friends too.

The older I get the more true I find this.

I know that my parents and mum in laws’ journey through grand parenthood has not been a conventional one.

They have had to find physical and mental strength tenfold and have had to learn skills never previously known to them.

It would be so easy for a lot of people who know us to consider our lives too complicated and unpredictable and take a back seat.

But I have never seen people become more close together than those who have experienced trauma. For the special needs parent and the child there will always be so many challenges.

But for the extended family… the grandparents, the great grandparents, aunties, uncles and so on… they have to put aside their own feelings of grief and focus on helping both the child and parent.

Their grief would just add to my stress and I know that they probably struggle a lot emotionally with what we have all been through.

From the early and very uncertain days in intensive care they were all there.

Taking our clothes home, washing them, and bringing them back.

Helping out in any and every way that they could.

Quietly grieving away from me so they could be my rock when I needed them most. They will always be the calm during my storm, and I will never forget any of the things any of them have done for me.

They’ve been there for the surgeries, the procedures, and even just helping entertain a distressed Amy in a multitude of different waiting rooms over the last four years.

They even stepped in when I returned to work after maternity leave and fully immersed themselves in a world of tube feeds, medications, and constant intervention.

Every sound she makes – they want to know what it means. Every new piece of equipment – they want to know what it’s for and how to use it.

They’ve learned to be as excited as me when a place has great wheelchair facilities and to fight for changing places to be added wherever possible.

They have become advocates, determined to change the world for those who may not yet be able to change it themselves. It’s so empowering.

Amy is having a procedure this week and already I have both grandmas offering to give up their whole day to keep us company and help pass a potentially difficult and boring day.

My mum recently apologised for getting upset that she couldn’t buy Amy a rocking horse or bike for Christmas.

Just one example of how much extended family of the special needs child feel they have to internalise their struggle.

Getting out and about these days definitely required a mobility car now, and already my mum and dad are hoping to either get insured on our van, or to get their own wheelchair access vehicle so they can still do what grandparents do and spend time with their grandchild.

Every Saturday we go out and we take my grandma and auntie with us too and we get breakfast. Amy is a fan of going out, but not to cafes or food places.

It’s boring for her and even with her iPad, toys and on tap attention – she has a tendency to cry and shout the entire time.

Without even asking, my dad and auntie will take Amy for little walks just so that I can have a hot drink and eat something. It makes her happy, it makes me happy, and hopefully makes them happy too.

I’ve known my dad to even just repeatedly take Amy in lifts because he knows she loves it and that it will keep everyone happy.

I always think how strange it must be for my parents having raised me – a neurologically typical child that met all of the usual milestones and never really had any problems.

To now having a granddaughter who is non mobile, nonverbal and tube fed. But when I see how they look at her, they have nothing but complete adoration.

She is their granddaughter and she knows exactly how loved she is and also how to get spoilt like any other child would.

There was a time when we questioned if Amy recognised people other than her mum or dad, but now it is very obvious how much she values and appreciates her family.

I now show her photographs of people she knows and she will often laugh and cheer loudly as we swipe through the pictures.

It melts my heart.

As Amy grows it will get harder to get her in and out of some houses. A lot of social time will have to happen out somewhere, or in our own house.

Putting hoisting and ramps in every house isn’t feasible… but what worries me less is seeing already how much everyone will work to accommodate and include us so that we are never left out.

In spite of a lot of challenges I have in life, I know how incredibly lucky I am.

Not just to have an amazing child that has opened my eyes to a new world; but also for my amazing family who will stop at nothing to help me, even if it’s last minute… even if it’s just to listen to me have a cry and bring me sneaky unhealthy snacks.

Life is short and we need to remember those snippets of happiness.

Those moments where everyone laughs and you see your daughter absolutely adoring the silly songs of granddad and the bouncing with her grandma.

It’s so easy to dwell on the hardships faced, but the reality is we are all very lucky.

So thank you, to everyone who is close to us and deals with our unpredictability, our cancelling plans, our leaving early… and for accommodating us as best as you can in every situation.

You always think of Amy first when planning everything – even on Christmas day at my aunties’ house when Amy was particularly distressed.

You all asked how you could help and what could have been done differently.

It was amazing.

Thank you to all the other grandparents, aunties, uncles, cousins etc. of special needs families.

You probably have no idea at all how important you are and even if we don’t say it – we couldn’t do it without you and we are so grateful for everything – even just bringing us milk when we can’t get out of the house!

You’ll Never Know

I was chatting with a friend a while ago about our daily life and I mentioned something about heading to another appointment, and said “You know how it is.”

To which she responded, “No, I don’t know.”

Most people would have nodded politely and moved the conversation along.

She didn’t.

She acknowledged that she doesn’t “know.”

She can imagine, she can try and put herself in my shoes, but she can’t know.

For some reason this small comment has always stuck with me. I appreciate her saying that more than she will ever realize.

Maybe it’s because so many people don’t try to understand and even if they try it’s still hard for them? Maybe it’s because I thought I knew before I really knew .

Or maybe it’s because there are days I feel so alone I want others to really know what this life can be like.

For many years I cared for a very special little boy.

I transferred him from his wheelchair to a chair many times a day, pushed him all around Target and fed him strawful by strawful of a blue icee, and watched him squeal with delight as he watched The Wiggles….over and over.

Thanks to him I can sing the mashed potato song like nobody’s business. Over ten years I cared for him, so of course, I thought I knew.

I thought I understood the struggles. I thought because I cared for him day after day I “got” the pain and knew the joy. I honestly did, but boy was I wrong.

It’s like I was standing in the doorway of their home but never inside.

You can only see so much from the door.

You can’t go upstairs and feel the carpet on your feet. You can’t take the steps to the basement and run your hands down the banister.

You can stand in the doorway leaning as far as you can to get a good glimpse, but you can’t actually touch anything inside. You can smell the fragrance of dinner but you can’t actually taste anything.

There is so much more. There’s only so much you can see from the doorway.

And until you take a step inside, you won’t know.

Now that I’ve crossed the threshold, I do really know.

Our four year old has congenital disorder of glycosylation; a rare metabolic condition that affects nearly every part of his body.

He is nonverbal, uses a wheelchair, struggles to do the simplest task and is the greatest thing to ever happen to me.

Since he came along I have had emotional aches in my body I never knew existed. I have shed countless tears over things I never dreamed I would experience.

I have cried in the shower or on the way home from an appointment more times than I can count.

But I’ve also cried tears of joy. Many tears of joy.

I’ve experienced happiness that you can only feel when you’ve taken a step inside. Joy you can only feel when you are no longer looking in.

Now I know. Now this is my house. I’m no longer looking in. I can feel, touch, smell, and taste it all. I know now that unless you are inside you won’t know.

So if you are trying to get someone to understand your life or you feel frustrated because those around you just don’t get it – just know this – they can only see so much from the doorway.

They will never know.

National Storytelling Week

They pass by. She watches. Some catch her eye, most don’t.

Her heart is heavy as they push past with bags, toys and smiles. She flashes a fake smile when they see her. They are leaving.

They are leaving and will probably never have to go through this again.

Her heart aches as she watches.

She spends her days watching.

Sometimes she gets to know a few of them.

They exchange stories, tales and expectations.

Her story always causes them to apologise for their own story.

Her phone vibrates.

Quickly she grabs it before it falls.

She exhales heavily as he doesn’t stir.

He needs his sleep.

Sleep can help.

Sleep can do many things, she tells herself as she lets the phone ring out.

The stale air hangs heavy around her as she turns her attention once more to the window. Why put a window there? She ponders. Quickly she scoffs at herself, she knows the answer.

She has the perfect view.

She can see everything.

She watches the team too.

They see her.

They know that’s how she passes time.

They often make gestures at her, asking if a cup of tea would be welcomed or if she’d like to leave for a bite to eat.

Food. It’s fuel. It helps just as much as sleep does. She hasn’t had much of either of them in two weeks. She can’t bring herself to leave, not yet. She will leave, she knows she will, but just not right now.

She should be used to this.

That’s what the team think, the experts.

She can never get used to it.

It’s a lonely place to be, yet it’s full of busyness.

She sighs as she watches the cleaners come in and begin their deep clean before they clock off for the weekend.

She has the room ready. She’s ready to be moved for the weekend to another room, on another floor with another window for her to look out of.

They have all left now. All gone home. Unlikely to be back for a long time, if at all.

The tap on door startles her.

“We will be moving shortly.

Do you want to nip out for a bite?”

He offers as he grabs a disposable apron ready to come and sit for a while.

“No. No I’m grand, thanks. I’ll wait until we are moved. Thank you” she smiles wearily.

She wants to be just like them. Those who are going home. Going back to their lives.

Each time they stay here, she has to hope that they all get to leave, together.

Beep… beep…beep

She watches the digits rise and fall.

His head moves slightly.

She walks towards him, takes his little hand in hers and gently kisses it.

He needs his sleep.

The orderly enters “Ready?” He asks.

“Yep” she takes all her hands can carry.

“Hopefully you will be out by next week.”

He smiles at her as he unlocks her son’s hospital bed.

A Hard Day’s Night

I could barely function in the day time without copious amounts of coffee to keep me going.  The nights seemed incredibly long and drawn out.

The baby books would remind that it was just a newborn phase and friends would assure me it wouldn’t last forever.

I remember my mum telling me to make the most of those nights, for they’d be over soon and I’d come to miss them. I wasn’t sure I believed her, but I tried to make the most of those times.

The middle of the night/early mornings when the rest of the world was asleep; just the two of us, snuggled together as he hungrily fed for what felt like the hundredth time.

It felt quite magical at times and despite feeling permanently shattered, I was confident that he’d outgrow it eventually.

He didn’t sleep through the night for a long time and just as he started to, his little brother arrived.

Hugh was born when Sean was just 14 months old but him waking up for feeds was the least of my worries. Hugh had reflux and could projectile vomit across the room.

My night times became even busier, catching puke, mopping floors and trying to stop him choking on his sick.

By the time he developed epilepsy at 9 months and would frequently stop breathing in his sleep, I’d more or less forgotten what sleep was.

For the first few years of Hugh’s life, I rarely slept deeply.  I cat-napped and I dozed with him beside me so that if he stopped breathing I could resuscitate him.

Truth be told, with a wilful toddler in the house as well, I’m not sure how I survived. I’m not sure how any of us did!

We’ve come a long way since those early days. Yet I’m still up frequently in the night to deal with the myriad of issues that arise when you have a child with complex medical needs.

Bed time starts around 7pm for Hugh – he ‘asks’ to go to bed by rubbing his eyes and pretending to be sleepy, but he really just wants to spend time in his bedroom with his bubble tube and his fibre optics.

8pm is his official bedtime though. I set up his overnight tube feed and give him a cocktail of medicines for epilepsy, reflux, constipation and to help control his secretions.

I then spend about 15 minutes wedging him into his specialist sleep system which helps keep his spine straight and prevent his scoliosis developing further.

Next, it’s time to attach his SATs monitor to his little toe. This monitors his oxygen levels and heart rate overnight and will alarm if his oxygen levels drop to low, indicating that he’s stopped breathing during a seizure.

By about 8:30 he’s ready to sleep and he uses his little button with ‘goodnight’ recorded on it to say goodnight to everyone in the house.

Usually he falls asleep pretty quickly, but if not, I give him melatonin to help him nod off.

It’s the staying asleep rather than the dropping off to sleep hat seems to be the problem for Hugh and he will wake frequently throughout the night.

I can give up to two doses of melatonin over the course of the night to help him drop off to sleep again if necessary and I’m regularly drawing up medication at 2am.

Seizures are another thing that wake him, and us, and although thankfully they aren’t all ones that require us to resuscitate him, we do sit in with him and use his vagal nerve stimulator to try and help the seizure stop and to improve his recovery.

Other reasons he wakes are due to pain from reflux, wanting a change of position and for various reasons I can’t fathom but often involve lots of tears.

Hugh’s non-verbal so working out what’s wrong can take a lot of guess work. He’s developed sleep apnoea recently and so his SATs monitor will alarm for those – often waking him.

We also get false alarms where it can’t detect his heart rate, again waking us and Hugh. And when Hugh wakes and wriggles his toes a bit too vigorously, it will also alarm for that.

Each time the alarm goes off, I jump out of bed, heart pounding – any one of these alarms could mean he’s stopped breathing completely and needs resuscitating.

Sometimes this is the case and of course then, being awake at 4am is a minor concern. However, for every one genuine alarm, there are many, many more times when he’s (thankfully) absolutely fine.

Yet, I then return to bed with a racing heart and adrenaline coursing through my veins and have to try and get back to sleep before I need to get up again.

I have a bit of a love-hate relationship with the SATs monitor – I completely rely on it to keep my son alive and it has, without a doubt, saved his life many times by alerting us to him stopping breathing.

However, when I’ve been woken by it unnecessarily for the 7th time in a night, I could happily throw it out of the window.

That said, I’d still take all the false alarms, knowing that it will wake me when Hugh does really need my help.

I bought a Fitbit to track my sleep and heart rate and discovered that not only does my heart beat ridiculously fast when I should be sleeping, but also, I rarely sleep for longer than an hour at a time.

The sleep graph looks more like a bar code there are so many periods of restlessness and awake times punctuating the navy-blue section depicting deep sleep.   It’s no wonder I wake some mornings feeling like I’ve not been to bed.

On my days off, I tend to go back to bed after the boys have gone to school, when I’m working though, I have to power through the day on coffee alone.

I realised recently that I’d been having sleepless nights for 9 years! So much for it being just a new-born phase eh?

Having said that, I do try to bear in mind that maybe one day, he won’t be here and I’ll miss being needed in the middle of the night.

And I confess, when he’s wide awake and giggling at 2am, I can’t help but join in.

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!’

National Young Carers Day

“Hey buddy” he gives him a hug which is met with a smile, a laugh and these days a hug back.

“I’m just going to get out of this,” he points at his school uniform in disgust, “Then grab my dinner, OK buddy?”

He pats his brother’s head as he walks past me and upstairs to rid himself of the reminders of his school day.

My phone rings. I scramble for my notepad as I know I won’t remember the details discussed over the phone. He hands me a pen, then points at the door.

I take the call outside in the kitchen, away from the hustle and bustle of the house.

“Well, who was it?” He asks as he fast forwards the adverts, while holding his brothers hand.

He’s not yet 13.

“Just the usual. Good lad, go up and do your homework”

“Is everything ok though, with Ethan” he stops short of the door.

I nod.

How much is too much? He knows though, he knows me well.

“Mam, I asked is everything OK with Ethan?” His voice pitch changes and I wonder if that’s the beginning of his pending teenage years. “Did they ring back about his peg?”

“Oh yeah, yeah, I just needed the notebook to remember who was who, you know how easily I get all his doctors mixed up. His peg is fine buddy” I shrug my shoulders and flash a smile.

“Ah ok. Right. Call me if you need help” he goes off to begin his homework.

My four year old sits playing in the corner when he hears me tut or say a word I shouldn’t say.

“Do you need me mammy?” He calls from the sitting room.

Do I need him? He’s four. How can I need him?

Before I can answer he is at the doorway between our dining room and sitting room.

“Is it wipes you need, or a pull-up, or just someone to talk to Ethan for a minute?”

He’s four. I feel guilty. I feel guilty for many reasons but right in that moment the reason is because he knows exactly what I need.

“Wipes please baby” I smile at him while trying to keep Ethan from decorating the floor.

He dashes off.

“Ohh mammy, will I call J to help keep Ethan’s hands away?” He asks through a pinched nose.

“No it’s fine. Thank you buddy, you’re a great help”

And those two young boys are young carers without ever knowing it.

Without it ever being anybody’s intention to have them help care for their brother.

That knowledge comes with guilt; a lot of guilt on my part. Yes, they are great boys and yes caring for Ethan teaches them wonderful things.

But, in the dark of the night I lay awake thinking about those two young boys and what weights lay across their slender not yet fully grown shoulders.

I think about the future. I think about how they will feel, cope and live after their brother leaves us.

I don’t want my boys to be carers.

I don’t have a choice.

Sometimes I tell myself aren’t all siblings semi carers of each other?

How often do we hear a parent ask a child to keep an eye on their sibling while they make a cup of tea or go to the toilet? Every parent does that.

I do that too.

Do other parents feel guilty? I don’t know. Maybe?

I think the guilt stems from how much they know about Hunter Syndrome while other children don’t even know about disabilities.

My four year old can tell you what hunter syndrome is and what respite is and why Ethan needs help with everything, even though he is 15.

My soon to be 13 year old, is so mature when it comes to Ethan but lacks that maturity in other aspects of his life.

I often wonder is that because he feels he has no choice but to be ‘mature’ when it comes to Ethan?

Does he know how easily Ethan’s life could change in a second? And, if so, is it me who told him that without uttering a word?

He’s able to tell you what a port is for, a peg tube, AFOS, what ERT is, the list goes on…and he’s now mastered the electric wheelchair, better than me if I’m honest.

Yes, my youngest sons are indeed young carers, young carers by circumstance as many many children all over the world are.

The 25th of January is National Young Carers Awareness Day, if you know a young carer, treat them to something special, and let them know that they are awesome – that’s what I plan to do.