Wednesday, 11 November 2015

Seeing and Believing

Of all the senses, sight must be the most delightful.

Helen Keller

I remember the day they told me Hugh was blind.  I went home and I sat on the stairs and wept.  I called my mum.  And she cried too. 

Of all the challenges he faced, the developmental delay, the seizures, the hypotonia, his feeding difficulties … it just seemed so unfair that he was hit with another blow. 

And blind?  Well, blind seemed so final somehow. 

When Hugh was a new-born I was concerned that he never made eye contact and that he was so disinterested in the world around him.  In a dark room, he wouldn’t turn towards the light, even light up toys, right next to his head in the cot, held no interest for him.  But slowly, painfully slowly, almost so slowly you wouldn’t notice, Hugh started to ‘see’ things. There’d be brief glimpses of recognition or attempts to reach towards things; shiny things and red things usually. We borrowed a dark den – a huge tent that blocks out all the light – and I’d sit in there endlessly with light up bouncing balls and fibre optics trying to teach him to see. 

The thing with Hugh’s kind of blindness is that it’s all to do with the brain and less to do with his eyes.  There’s very little wrong with his eyes really, but his brain just can’t make sense of what they see.  This is called a Cortical Visual Impairment (or CVI for short).  The way it was explained to me was to:

*          Imagine his eyes are a camera.  The camera works fine - it takes a great picture. 

*          There’s nothing wrong with his optic nerve either, although it’s a bit slow – so the driver delivering the film to be processed takes a long and meandering journey to the processing lab, but it gets there fine and in one piece. (Remember sending camera films off to be printed?  I guess it’s an outdated metaphor now). 

*          But the processing lab, Hugh’s brain, is a right mess - there’s things all over the place, it’s all higgledy piggledy (OK the Doctor never explained it quite like that) and it’s all so disorganised that the film gets mixed up.

*          The perfect picture taken by the camera isn’t printed correctly and the resulting photo bares no relationship to the picture that was originally taken. 

So basically although Hugh’s eyes can see, his brain can’t make sense of the image. 

In a funny kind of way, this is good news.  Or less-bad news.  It gave us something to work with, something we could try and improve – hence the hours sweating in the dark den.  Hugh’s brain could try and learn how to see.  Hypothetically anyway. 

Over the years, I’ve seen tremendous improvements in Hugh’s ability to see. He certainly recognises his favourite toys and he will reach and grab for them.  He can spot the shiny string from balloons and has mastered the art of catching it.  He can even track and follow objects with his eyes.  From the baby who couldn’t see a light shining in a pitch black room, these are big steps.  Despite these improvements Hugh continues to be registered blind (or severely sight impaired as the new phrasing goes).  And as yet, he is still not looking at faces or making eye contact and I believe this is something that is very difficult for people with CVI to achieve.  That does of course make me a little sad; I would love him to look at me … I mean really look at me.  Although that said, even without looking at me, he’s pretty quick at reaching up and pulling my glasses off!!!

This week, however, has seen another step in the right direction and Hugh was offered glasses for the very first time.  Previously it was felt that the problems with his brain making sense of the image were so severe that glasses wouldn’t help.  Now though, he has developed enough to allow him to try glasses to see if his eyes being able to see more clearly will help.

Confusing, I know. 

But if we go back to the original analogy – the camera works fine but the lens needs adjusting to get a clearer, less blurry image (hence the glasses).  If the original image is clearer and more focused, then perhaps the brain will find it easier to interpret.  Who knows?  It’s certainly worth a try.

So here he is trying on some glasses today.  He seemed to quite like them (even with that annoying sticker stuck right in the middle). I’m not sure if he’ll keep them on or whether they’ll even help at all, but we shall see how it goes.  His new glasses should arrive next week.  I’ll keep you updated.

Photo Credit

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I'm linking this post up to the linky Small Steps Amazing Achievements over at Autism Mama  #SSAmazingAchievements


and also the  Mad Midweek Blog hop (which is a new one for me!)

Super Busy Mum

Wednesday, 23 September 2015

Hiding From The Future With My Head Stuck In The Sand

The future’s bright, so the famous advert tells me.  I’m not so sure – most days I can’t see it as my head is buried too far in the sand. 

I find thinking about The Future far too stressful and upsetting to contemplate, so mostly I just pretend it doesn’t exist – I’ll cross that bridge when I come to it kind of thing.  There was a time I didn’t think beyond the next hour; then just getting to the next morning was a miracle I daren’t hope for.  As time progressed and Hugh outlived his initial prognosis of two years I could begin planning a little further ahead.  But even now, while Hugh is relatively healthy I daren’t look further than a few months ahead.  And if I do make any plans, or make mere suggestions of plans, the sentences are finished with a ‘please God’ or a ‘hopefully’ or a ‘If Hugh is well enough’. 


That’s the difficulty of living with a life limited and life threatened child; I don’t know what’s around the corner.  To some extent, that is the same for everyone – no one really knows what can happen and things can change in the blink of an eye.  But for the majority of people that don’t live under the shadow that such a diagnosis casts, you can look ahead with a relative degree of confidence.  You might plan next summer’s holiday, or your child’s transition to secondary school.  You can think and daydream ahead to college and university choices and weddings, perhaps.  With Hugh, I’m not afforded that luxury.


I’ve been asked many times what future I want for Hugh.  The social worker asked during his core assessment and it’s been discussed at the Advanced Care Plan meetings. I’ve been asked many times what I see for Hugh, what I hope for in his future.  Every time it catches me, and I have to swallow a hard lump in my throat and bite back the tears. 


What I want is ...

I want there to be a future for Hugh. 

That’s it! 

I want him to be here.

And I want him to be happy.


The thought of a future without Hugh terrifies me.  I daren’t think about it.


Yet there is just one thing that scares me more.


And that’s Hugh living in a future without us there to protect him. 


It’s hard to type that, it’s hard to admit what that actually means.   I can’t bear the thought of losing my son, yet I’m terrified at the prospect of him outliving me.  Who would look after him if we weren’t here?  Without us there as his voice who would know what he wanted?  Who would comfort him when he was sad?  Who would sit with him when he was sick?  Who would hold his hand and sing to him and tell him everything would be alright while the seizures racked his brain?


Hugh's big brother has the future mapped out.  He reckons he’s building a house in his garden for Hugh to live in.  He has aspirations of being a footballer or a policeman or a fireman or a farmer, but more recently he’s said he wouldn’t get a job as he’d look after Hugh when I died.  That’s the way he thinks you see; at just 6 years old. He knows, deep down, that his brother will need lifelong care.  He assumes it’s his responsibility when we’re no longer here to do it.  I’ve told him it’s not, but he says he wants to. I’ve assured him he can live his own life and that Hugh will be looked after.  That everything will be ok, there’ll be people there to take care of Hugh.


But that’s not true.
Because unlike him, I can’t or rather won’t look to the future. 

I’ve not put any plans in place. 

I’ve not thought that far ahead.

Because I can’t. 

Because I’m too scared. 

Because the thought of it is too terrifying to contemplate. 

And I just wouldn’t know where to start.


My short term plan is to remain invincible: 
I can’t fall ill,
I won’t get cancer,
My back won’t give in,
I won’t be involved in an accident,
I won't get old. 


It’s also my long term plan.


Which is no kind of plan at all really.

*****   *****   *****   *****   *****

The aim of this blog post was to stimulate a discussion about how Special Needs Carers plan for the future. 

Have you made plans?  How did you start? What plans did you make? What first prompted you to put those plans in place? Has having those plans given you some peace of mind?  Or are you like me, still putting it off?  

Please let me know your thoughts either in the comments below or perhaps sharing your own blog post about planning for the future. Remember to link back to here if you do.  (If we get a few, I’ll set up a little linky for us too)

“Project Safe”, an initiative of St Loye’s Foundation, aims to provide a service to support people with special needs and give peace of mind to their carers.  You can help shape this service and ensure it is the kind of service you and other carers want and need by visiting their website here.

Thursday, 10 September 2015

Contacting my MP about rare, undiagnosed and genetic conditions

We're tweeting our MP - see how easy it is?

I've never been one for politics to be honest.  It was a significant part of my first year of my Social Sciences degree but I ditched it for Psychology as soon as I could. I guess I kind of na├»vely thought it didn't really have anything to do with me. I kind of didn't 'get' it.

And then I grew up.  And I realised how politics impacted every single aspect of our day to day lives.  And then I had Hugh and suddenly party policies on disability and benefits became extremely important to me.

I'd not heard of All Party Parliamentary Groups before.  Maybe you have, but if not:

All Party Parliamentary Groups (APPGs) are informal, cross-party, interest groups of MPs and Peers interested in a particular issue. Cross party means they have politicians from all the different political groups involved and so they are a great way to make sure everyone in parliament knows about the issues they cover.

APPGs are not funded by parliament and do not have any power to make laws but these groups can act as pressure groups for specific causes helping to keep the government, the opposition and MPs informed of parliamentary, expert and public opinion.
Genetic Alliance, who support the work of SWAN UK are planning to set up an APPG for rare, undiagnosed and genetic conditions.  This will increase awareness of these conditions in parliament, help ensure that families like ours have access to appropriate care and support and discuss issues relevant to families affected by rare and undiagnosed genetic conditions such as transition, coordination of care and research.
I emailed my local MP Jess Philips, to ask her to consider joining the APPG on rare, undiagnosed and genetic conditions.  It's easy to do - you too can find out who your MP is and email them here:
  • Because rare, genetic and undiagnosed conditions are often life-long and serious, affecting multiple systems of the body. Hugh is five now, but he still can't sit, walk, talk or even eat.  At this stage it is perhaps unlikely he ever will.
  • Because many of them are progressive, meaning that the health and quality of life for affected individuals will continue to deteriorate throughout their lives and many of those affected will die prematurely. We already know that Hugh's condition is both life limiting and life threatening, which means we, as parents, have to face the fact that our son will probably never live until adulthood.
  • Because the vast majority of rare and genetic conditions cannot be cured and most have no effective treatments. All we can do is simply manage the individual symptoms as they arise.
  • Because families like ours frequently experience delays in gaining an accurate diagnosis for their or their loved one’s condition, and can struggle to access appropriate care and support.  Without a diagnosis support has been much harder to come by, we have had to fight and beg and reach breaking point before Hugh's needs, severe as they are, have been taken seriously.  If you're interested, I've written more about the difficulty in accessing support without a diagnosis here.
We are unlikely to be the only family within our constituency whose child is affected by a rare, genetic or undiagnosed condition. It is thought that about 50% of children with learning disabilities and 60% of children with multiple congenital problems do not have a definitive diagnosis to explain the cause of their difficulties.
Rare and genetic conditions are a significant cause of illness - 1 in 17 people will be affected by a rare condition at some point in their life (that’s approximately 5,000 people in our constituency alone) and 4 in 100 babies in the UK are born with a genetic condition.
It is estimated that 6,000 children are born a year with a genetic condition that will remain undiagnosed.
So please for Hugh, and for all the children like him and families like ours that are affected by rare, undiagnosed and genetic conditions, please contact your MPs and ask them to join the APPG.
And Jess... if you'd like to meet Hugh and I and discuss how being undiagnosed has impacted our lives, we'd be more than happy to.
I'm not just rare ... I'm one of a kind #Hughnique
Want to find out more and use a template letter to contact your MP? Click here:  SWAN UK APPG Q&A


Sunday, 6 September 2015

Back To School Again

September has arrived again, the morning's damper and darker and already a hint of autumn in the air. A sense of excitement and trepidation as the new school year beckons and once again I'm sucked in by its promise of new beginnings and new starts and have signed up to a Slimming World class and a new yoga class. September for me is like January and each year I find, like many people do at a New Year, I look to the past and the future, look back and reminisce; look forward and hope. Even in the years (though there were comparatively few of them) that I wasn't actively involved in the education system one way or another, I would still buy an academic year diary- planning my year from September to August rather than January to December.

All ready for another school year.

This September is no different. I've reflected on the past two years watching both boys starting school, one in the local mainstream primary, the other a year later in the local special school. I'm not filled with the same sadness anymore that they attend different schools, that one walks in holding my hand, that the other leaves in his wheelchair at the back of a special needs bus. I don't mind so much that their uniforms are different coloured and that the out-grown uniform of the eldest gets passed to friends and neighbours rather than to his little brother. It is what it is and I know both boys are in the best place for them. Though I suspect I'll still shed a little tear as I wave them goodbye on Monday, simply because it marks that passage of time and my two babies are growing up.

I look forward to what the year will bring for them too and what they will each achieve. Their accomplishments will be different and those of my youngest will certainly not reflect those of his peers, but they'll be his achievements all the same and I will be equally proud of both children.

This year differs slightly though in that for the first time in a long time I'm contemplating returning to school too. As a teacher for many years before the boys came along, the night before school in September would always fill me with a strange combination of anxiety and excitement. One that invariably left once I was back at the front of a room full of children. I stopped teaching when my youngest was born; he was so ill that returning to work was impossible. My time away from the classroom and at home with my son(s) has been a steep learning curve. My youngest has profound and multiple learning difficulties; disabilities that even as a special needs teacher, in a school for children with autism, I had never encountered before. He has taught me a lot.

This September dawned with a little more anxiety and a lot more excitement than previous years. I'm looking forward to taking what I have learnt from my own children and using it to make me a better teacher. I'm looking forward to finding that little bit of 'me' again in amongst the other roles that have taken over: mother, nurse, carer, doctor, physiotherapist. I'm looking forward to helping children learn and making a difference in their lives.

The school clothes are ironed, the pencil cases packed, the hairs cut, the new shoes bought and polished. September is here and I for one am ready.
Bring it on!

"What are you looking so happy about?"

Monday, 17 August 2015

The life I never expected

Way back...
Way back when...
Way back when I didn't know how disabled Hugh was or would be...
Way back when I didn't realise how destructive his seizures were...
Way back when I thought the doctors could fix things...
I thought, 
I thought that once we'd sorted the epilepsy everything would be better,
I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.

I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.

I didn't expect to come to terms with having a son that hardly knew I existed.

I didn't expect that, even once the terrible times had past, the devastating consequences would remain.

Hugh's epilepsy has robbed him of a future.
Hugh's epilepsy has robbed us of the child he might have been.

His really bad seizures are less often than they used to be,
And for that I am grateful,
But they cast a long shadow,
And I never expected that.

Thursday, 4 June 2015

What I remember

Back when the days were dark, I spent most of the time verging between inconsolably depressed and stomach-churningly terrified. I worried endlessly about the future, or more accurately the lack of future for Hugh. I couldn't imagine life without him and yet couldn't bear to think that *this* was it, all we'd have. I wanted to seize the day, make the most of every opportunity, create happy memories, but I was too scared to leave the house and he was too sick most of the time. I remember asking people 'how do you live like this? How do you cope?' They told me it got easier, that you learn to live in the moment, that you cherish the little things. And I had to believe them, I had to believe that one day I could be like them- positive, happy, because if it wasn't true, then what hope was there?

Here's what I remember:

I remember standing by Hugh's bed in a&e, ringing Sean's nursery to say I wouldn't be there to collect him.  Again.

I remember running bare-foot through the hospital, shoes in hand, gasping for breath, racing back to the ward where the crash team were trying to bring Hugh back. 

I remember putting Fireman Sam on the telly for Sean with one hand while I performed CPR and rang an ambulance.

I remember sitting in the corner crying, while Hugh screamed and Sean, just two years old, hugged me and told me it would be alright.

I remember collapsing to my knees in the aisle of an empty church, sobbing, begging God to help me.

I remember feeling sad, 
I remember feeling guilty, 
I remember feeling lonely, 
I remember feeling angry, 
I remember feeling scared.

And I remember finger painting; Hugh smearing red and green paint across white paper to make Christmas decorations, Sean using a paint brush to paint not just a green dinosaur on paper but his whole body so that he looked like the Incredible Hulk.

I remember our Friday night discos- curtains closed, lights off, the disco ball spreading bright pinks and blues and greens around the room, Sean spinning Hugh in his chair as they danced to the music.

I remember cuddles in bed on wet mornings after sleepless nights, watching endless episodes of Peppa Pig. The warm duvet wrapped around us, the boys snuggled together, me sipping warm, sweet tea.

I remember sunny days in the garden,blowing bubbles, watching the little rainbow-filled spheres rise up into the sky, I remember Sean chasing them, popping them, feeling the little bursts of water land on our bare arms. I remember Hugh lying under the multicoloured spinners, watching them turn. I remember the sound of the wind chimes tinkling gently in the wind.

I remember the lights on the Christmas tree twinkling as the sound of Christmas carols filled the house, the scent of cinnamon from the little Christmas sensory box we'd made for Hugh. I remember Sean's excitement as he gleefully picked foil-wrapped chocolate from the tree, just one more 'last one'. I remember the awe and joy in Hugh's little face as he watched the lights dance.

I remember laughing, 
I remember feeling happy, 
I remember seeing the joy in each moment, 
I remember the glow of love and pride, 
I remember feeling blessed.

Tuesday, 2 June 2015

The School Bus

It’s not that I don’t realise that my son is disabled – he’s five years old and still can’t sit up, it’s certainly not what you’d call a ‘hidden disability’, but I just see Hugh.  I have two beautiful sons, just 14 months between them – I don’t look at them as ‘the older one with glasses’ and ‘the small one in the wheelchair’, I just see Sean and Hugh, my two boys.  Every so often though, it hits me again, and I’m reminded of Hugh’s disabilities.
It can be little unexpected things that get me, that remind me that life is a little ‘different’ than I expected; two brothers playing football in the park, a newborn baby holding his mother’s gaze lovingly.  Such little things that are everyday occurrences for most people pull at my heart strings and remind me what life could have been like – the life I expected, the life I don’t have.

The School Bus
Then there’s the more brutal, slap in the face kind of reminder – the day the huge hospital bed was delivered, Hugh’s first time in the gaudily decorated torture device also known as a ‘standing frame’ and then today, this – the school bus.

I was prepared to be upset though, I expected it. 

When Hugh was a few days old and I imagined walking to school hand in hand with my two sons, I didn’t anticipate that I’d be shipping one off to special school in a wheelchair.  I’ve resisted sending him on transport for nearly two years now, preferring to drop him off and pick him up myself. I’m lucky that his school is close enough to do that and with a bit of rushing and the more than occasional late mark, I’ve managed to get two children to two different schools.  But I’m trying to get back to work myself now and to get three of us to three different schools before 9 o’clock is pushing it a bit.

"Is the bus here yet, Mum?"
Hugh was dressed and ready in his chair well before the bus arrived, unusually happy given the time of day (he’s not really a morning person).  His bags packed we waited anxiously – or rather I waited anxiously, Hugh chilled out and Sean watched TV. 

We’re on a busy road and the traffic was almost at a standstill as the tail lift on the rear of the bus lifted Hugh and his wheelchair on.  The cars full of parents inched by, watching as Hugh was loaded on.  Memories of the cruel taunts I remember being used in childhood about *those buses* and the people on those buses – you know the ones!  I won’t repeat them.  I wondered if that’s what people saw as they passed.

I saw Hugh smiling out of the window excited about the new sensations and the new experience.  I saw my son going to school on a bus along with two of his class mates, just friends travelling to school together. 

And I didn’t cry. 

But as I took my eldest son’s hand and walked him to school and I watched the brightly coloured bus carrying my youngest son turn the corner out of sight, I admit there was a lump in my throat.

"Bye Mum"

Wednesday, 13 May 2015

A Special Holiday - Making Every Moment Count

It was our first family holiday after a time when we thought we'd never have a holiday again. 

In fact it was our first family holiday shortly after a time when we thought we'd never be happy again. 

It took some persuading to make us go.

We were scared, really scared. 

We'd been told our son would die in childhood. At one point he wasn't expected to make his second birthday. 

And when things started to get better we were too scared to believe it lest the walls came crashing back down.

We'd been living on a knife edge for so long.

We recognised the overwhelming need to make happy family memories but were terrified of the consequences of our ‘risky’ actions. We were torn between wanting to make every moment count and the fear of something catastrophic happening while we were away from home. 

But our wonderful palliative care nurse coaxed and persuaded. The charity React provided us with a lovely little caravan by the sea. We went prepared with notes and documents and back up plans; details of local hospitals and ambulance response times, a car packed with life saving medicine and medical equipment. 

That holiday was magical; a week in Wales by the sea.  The sun shone every day; there wasn’t a single cloud in the sky.

We laughed, we played, we relaxed, we had fun.

We made memories we can cherish forever.


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This post has been written to mark Children’s Hospice Week (11-17th May) in conjunctions with the charity Together for Short Lives.  This year’s theme is about ‘Making Every Moment Count’ focusing on how precious time is for families by capturing moments in time.

Facts about hospice care & life limited children:
·         Most children need round the clock care – 24 hours a day, seven days a week
·         Families need support so they can make the most of every moment together
·         There are 53 children’s hospice services in the UK providing a lifeline for families
·         Children’s hospices are bright and happy places focussing on helping families make the most of every moment
·         Children’s hospices are all charities that rely on public support

Our local hospice has been a huge source of support for us.  You can find out more about Acorns and the work they do here: Acorns Children's Hospice.

Get involved:
You too can take part. A social media campaign will run throughout the week encouraging people to share the moments that matter to them by posting pictures, videos and comments on Twitter and Facebook, using #momentscount. Your moment could be a wedding, a celebration, a party, with friends and family or a career highlight... anything that captures a moment in your life that you would like to share.

So come on – share some of your precious moments using #momentscount too.

Monday, 11 May 2015

Weaning off the ketogenic diet - an update

For the last month or so we have been slowly weaning Hugh off the ketogenic diet- the diet that dramatically changed his, and our lives, when he started it just over three years ago. The wean, so far has been going well. His body hasn't had much carbohydrate at all for the last three years so we are very slowly increasing his intake on a week by week basis. The carbohydrate is in a powdered form and is added to his daily tube feed. He is currently having about the equivalent of a small box of raisins a day- still a tiny amount!  His body needs to adjust; his gut will have to get used to this increase in sugar and his body will have to learn to start taking energy from the carbs rather than fat as it's been used to. The increase in carbohydrate is gradually bringing down the ketone levels in his blood- the by product of the diet that has the crucial anti-epileptic affect on his brain. 

Optimal ketone levels for seizure management are between 3-5 and we are consistently well below that now. So far (and please touch wood as you read this) there has been no real change in his seizure activity, other than a few extra night time seizures which have caused him no problems. We're not out of the woods yet though- when Hugh started the diet the effect was almost instant, his seizure decreased dramatically straight away, even before his ketones had reached optimal levels. So, in my humble and inexperienced opinion, the reverse may be true- even with a very small amount of ketones in his blood, it could still be having an anti-epileptic effect. Time may tell I suppose. 

We're ready to move to the next phase now which is introducing a new feed. Later this week, we'll begin replacing one feed a day with 'nutrini multifibre' which is what he was on before he started the ketogenic diet. 

Just to be clear, as a few people have asked me recently, Hugh will still be fed by a tube. He's tube fed because he's not always able to swallow food safely and I don't think he can chew at all. He was tube fed before he started the ketogenic diet. On a day to day basis his feeding regime will remain unchanged really, just the content of his feed will differ. But I hope that the reduced amount of fat in his diet will help with his other gastric issues such as reflux and constipation, though that remains to be seen.

All in all the whole process is slow, steady and carefully controlled. We're testing his blood daily to see how his ketones and blood sugar levels are reacting and keeping a close eye out for any changes to his normal seizure pattern. 

I'll keep you updated with any changes and his progress, but far things do seem to be going well. (*Touches every wooden surface available).

Thursday, 30 April 2015

When You Have a Life Limited Child Hospice Care Means So Much

I used to daydream about my boys growing older. I'd imagine them playing football in the park, squabbling over computer games and teasing each other about girls. In my mind's eye, I'd see them going for their first pints together and being best man at each other’s weddings. With just 14 months between them - one blonde and tanned, the other dark haired and pale - I saw two strong, handsome men, best friends as well as brothers. 

But then we found out that Hugh, the younger of my sons, has an undiagnosed genetic condition that means he is unlikely to live until adulthood. 

Amongst other things, he has a rare and severe form of epilepsy which causes him to stop breathing for prolonged periods of time, most recently over 15 minutes. The life-limiting label robbed me of that right to dream so far into the future, and the life-threatening label scared me into thinking every day would be the last.

In all my pre-child fantasies about what life would be like with children, I never once imagined a hospice. Who does? When the option was first suggested to me, I shuddered, sickened by the implications. A hospice is no place for a baby, my baby! I refused to even entertain the notion that we might benefit from such a place.

But at 18 months old, Hugh required 24-hour care. His needs were physically and emotionally draining. He was stopping breathing so frequently that I literally couldn't turn my back on him; I was giving him mouth to mouth as often as 15 times a week. 

We hardly slept, afraid of what might happen if we did. Instead we would doze on and off throughout the night, with Hugh between us in the bed, each of us holding his hands so that we'd immediately spot any subtle movements that might indicate he’d stopped breathing. Some nights we'd jump from the bed two, three, four or more times - one of us switching the light on and grabbing the phone ready to dial 999, whilst the other gave mouth to mouth - hearts racing, adrenaline pumping and barely enough time to catch our own breath before trying to breathe for Hugh. It was exhausting.

"The physical and emotional drain on a family caring for a child that needs round-the-clock care can be staggering. Hospices can offer a break from the pressure of day-to-day caring and a step back from the enormity of the caring role. It allows you to ‘just' be a parent again; not a carer or a nurse or a physiotherapist or a doctor or a pharmacist. Just Mum."

Added to this was the daily physiotherapy he needed to try to teach him to sit and stand, the visual stimulation to encourage him to use his eyes, the regular medications and his tube feeds 5 times a day for an hour at a time. 

And that was when he was well. When he was ill, it became more intense; we'd have to monitor his temperature hourly, do chest physio every four hours, give him nebulisers every two hours, and suctioning, all to try and prevent chest infections. Many nights the living room resembled a high dependency unit, with monitors and flashing lights and oxygen. I'd sit on the sofa drinking coffee to stay awake and alert, carefully watching Hugh as he slept fitfully in his pushchair next to me.

And through all of this I had a two-and-a-half year-old who needed me, too.

It was our older son who finally allowed me to accept that I needed support and that a hospice might be the place to get it. The fact that Sean was missing out on his childhood because I was so preoccupied with Hugh's care needs made me admit I needed help. The complexities of his condition meant getting a child minder for a few hours just wasn't an option, and so it had to be the hospice. 

Accepting that my baby was eligible for support from a hospice broke my heart. Like many people, I had preconceived ideas about what a hospice is. I imagined a sad and depressing place; solemn and morbid. But nothing could be further from the truth. A home from home, it was, and still is, warm, welcoming and inviting. Yes, end-of-life and bereavement care is a significant part of their work, but it is not their sole focus. They offer respite and support for the whole family as well. 

The physical and emotional drain on a family caring for a child that needs round-the-clock care can be staggering. Hospices, like Acorns – our local children's hospice – can offer a break from the pressure of day-to-day caring and a step back from the enormity of the caring role. It allows you to ‘just’ be a parent again; not a carer or a nurse or a physiotherapist or a doctor or a pharmacist. Just Mum. 

Letting someone else take responsibility for the burden that I felt should be solely mine was hard - but I relished the opportunity to spend carefree hours with Sean in the park. Instead of checking for emergency vehicle access and watching Hugh like a hawk, I could push Sean on the swing and run through the trees. The weight was temporarily lifted from my shoulders. It took time for me to adjust to not having my little shadow continuously by my side, but the breaks rejuvenated me, leaving me stronger to face the days ahead. 

The contentment of a full night's uninterrupted sleep, or the chance to have a quiet meal out with your husband are simple pleasures many take for granted, but without our local children's hospice, these would not be possible for us. The hospice has taken the broken pieces of our family and carefully nurtured them back to a whole. They have picked us up at our most scared and vulnerable, held us close and assured us that although they can't make it all right, they can help us through.

Though the future remains uncertain at best, the care and compassion our family have received from Acorns has helped us to see the light on even the darkest of days. We are eternally grateful for their support.

This post was originally posted on Mumsnet in 2014 to celebrate and raise awareness of Children's Hospice Week.  This year #ChildrensHospiceWeek runs from 11th- 17th May with the theme 'Making Every Moment Count' .  You can find out how you can join in and support it here:  I'll certainly be showing my support again this year and sharing the moments that count for us #momentscount