Saturday, 13 December 2014

I wouldn't change you ... But ...

I love you with all my heart son, but if I could take away your epilepsy, I would.

I sometimes wonder who you would have been without it. Would you be sitting now? Would you be walking and talking? Maybe. Maybe not. Either way the seizures are still a hinderance in your development. I don't think I realised the damage they were doing until you lost your ability to smile. When you couldn't open your eyes and you couldn't lift your head, I thought epilepsy had taken all you'd got.

You smile all the time now, my precious child; but when you look at me with such fear in your eyes, it breaks my heart. I don't know what's happening in your brain, but I know you're terrified.  It's scaring you. I wish I could make it stop.

I'm not sure what's worse; the seizures that scare you or the ones that scare me. Seeing you go blue like that will never get any easier. Seconds stretch to  minutes, minutes feel like hours. I force the air into your lungs, breathing for you while your brain resets, praying you'll breathe again.

Epilepsy doesn't make you who you are my child; you are amazing and wonderful and beautiful and brave.

Your epilepsy defines me at times though- I am scared and frightened and angry and sad.

I love you my son.
But if I could, I would take away your epilepsy in a heartbeat.

Wednesday, 19 November 2014

Hugh's First Packed Lunch

Mmmmm ... luminous green mush!
Hugh took his first ever packed lunch to school yesterday – smoked salmon, cream cheese, broccoli, cauliflower and spinach, - a little bit fancier than his big brother Sean’s usual cucumber sandwiches and a lot more fiddly.  Blended to a pureed consistency it looked radioactive with its luminous green glow but I felt so proud being able to send in ‘real’ food.

You see, for the last three years Hugh has been fed by a tube.  Initially an NG (naso-gastric)tube – a tube that passed up his nose, down his oesophagus to his stomach, then via a gastrosotomy (a surgical opening into the stomach via the abdomen) through a device known as a PEG (Percutaneous endoscopic gastrostomy) and now a mini button.  Prior to tube feeding, Hugh had fed orally.  At 14 months I was still struggling to wean him and he was mostly bottle fed, though he managed some purees.  Apart from severe reflux issues early on, which were resolved with a cocktail of drugs and changing his milk formula, he was managing to gain weight adequately so although his feeding wasn’t really age appropriate we weren’t overly concerned. 

L-R: The NG, The G-Tube, the button (photo credit for G tube)

That all changed however, when a long and dangerous run of seizures left Hugh unable to swallow.  In fact the seizures, and drugs used to stop them, had a devastating effect, robbing him of his ability to roll, to lift his head, even to smile.  While he recovered on the high dependency unit, he was fed through an NG tube and as time passed and he started to improve enough that coming home looked likely, we were trained in how to feed him using the tube.  I was devastated.  I was under no illusions that Hugh was developing typically, but this tube, taped to the side of his face, marked him out as different.  Tube feeding felt like such a step backwards in a world where our steps forward were so few anyway.  I’d previously sat waiting for hospital appointments and seen posters offering support to tube-feeding families and thought ‘at least we don’t have to deal with that’.  I was assured though that it was only a temporary measure while he recovered from the effects of the seizures.  I remember a speech and language therapist coming to see us on the ward before we were discharged (speech and language therapists also deal with feeding and swallowing issues as well as communication) and discussing surgical options for tube feeding.  I looked at her aghast, disgusted even, explaining that we didn’t need to think about that, as his tube was only a temporary measure and he’d be eating orally by the end of September.  That was in July 2011! (You can read a little bit more about this time here: Six months on from an epilepsy diagnosis)

As time went on, I began to see the benefits of the tube.  Instead of being admitted to hospital every time he got ill, I could keep him fed or at least hydrated at home.  Previously, any bug – coughs, colds, sickness and diarrhoea – would leave Hugh too tired and weak to eat or drink.  It would be impossible to get fluid or medication into him and he’d invariably end up having lots of seizures and become dehydrated.  The tube made managing that a bit easier.  But the down side was his poor little face, my God, it was red raw.  He’d pull the tube out at all hours of the day and night ripping the surgical tape from his face as he did so.  He wore socks on his hands constantly to try to stop him grabbing it and I changed the tape daily as he would try to rub it off with the back of his sock-covered hand.  Re-passing the tube was a nightmare, during the day the community nurse would come and do it, but at night we’d have to take him to hospital.  Often parents are trained to pass tubes themselves but we were advised that because Hugh was so difficult to pass a tube on and fought it so much that it was safer to get a nurse to do it.  I would have to pin him down while he screamed, held his breath and went blue in pain and anger.  Invariably they’d draw blood.  We’ve since discovered that his adenoids were huge and his tonsils almost touching so it’s no wonder it was so difficult and painful.  At that time though it was necessary but I felt so evil pinning him down while he screamed and cried.  Poor Sean witnessed it once; he was only two at the time.  He sobbed for ages and was really distrustful of any nurses that came to the house for a long time after that.

I tried my hardest to wean Hugh but seizures and illness made it impossible, so a year after having the NG tube, I was begging for a gastrostomy – at least the skin on his face could recover (by now the stigma of a tube was the least of my concerns) and we wouldn’t have to fight him so frequently to re-pass the tube.  He’d also get to use his hands again – they could come out of the socks!

Cauliflower cheese anyone?  Anyone?
Since then we’ve persevered with the weaning.  There have been peaks and troughs – times when he’s managed a full days worth of food orally and times when he struggles to swallow at all.  Like most areas of Hugh’s life, progress moves at a glacial pace.  Being on the ketogenic diet (for hisepilepsy) makes it all slightly more complicated because he has to have a very specific ratio of fat and carbohydrate, plus everything needs to be blended to a purée consistency.  But we’ve persevered, invested in a high tech blender and fancy digital scales and I make batches of meals for him and freeze them.  Sometimes he’ll manage quite a bit, other times it’s just a mouthful or two before he gags or gets tired. When he comes home from school he’s usually far too tired so lately weekends and holidays have been the only times I’ve been able to really pursue this.

However, yesterday, the speech and language therapist assessed his feeding at school and has given the green light to say that Hugh is safe to have tasters of food at school now too.  This is fantastic news and in Hugh terms a real leap in progress.  From now on, when he’s well enough, he’ll be having small amounts of food at lunch time, just little tasters but hopefully this will progress to larger quantities.  Hugh used to always be so motivated by food – when he was little, we always seen the most intentional communication around meal times (i.e. shouting to mean “hurry up mum give me some more”) so I’m really hoping that it will help in this area too.  The routine of being able to do this regularly at a set time every day is bound to help him too.

So while at first glance sending a packed lunch into school for a 4 year old child doesn’t seem such a big deal, for us it’s a huge achievement and I hope that it’s the start of many more small steps in the right direction.

What's for pudding?

Ethans Escapades

Wednesday, 5 November 2014

Watching And Waiting

You might see me with Hugh, chat to us, see me walking to the shops and think everything is normal, fine, relaxed. Have you ever seen me hold his hand while I talk to you? This is not just to give him comfort that I'm there (he's severely visually impaired) but also so that I can spot instantly if he has a seizure even if I'm not looking directly at him. I'm constantly watching Hugh - his fingertips, the end of his nose, the way his toes wriggle or his eyes move. Fingertips, nose and earlobes are the first to turn blue if he stops breathing. Hugh might be happily facing away from me whilst I chat, but I'll be glancing at his fingers or the way his legs are moving without you even knowing. 

At one point all we did was wait for the next seizure. They dominated our lives entirely. I couldn't leave Hugh alone, not for a second, just in case. I couldn't pop into the kitchen, or upstairs to the bathroom without taking him with me. I'd been caught out before- he'd turned blue in my absence, so I didn't leave his side. I couldn't toilet train Sean- it would mean leaving Hugh. And when things got really bad, we were confined to the house- the very realistic fear of resuscitating him in public, whilst trying to look after a willfull 2 year old Sean was just too much for me to manage. With the help of friends and neighbours Sean was taken to nursery a few times a week and Hugh and I lived as virtual prisoners. During that time I spent my days and nights waiting for the next big seizure. Sometimes it'd be hours later, sometimes days. If we got past 7 days I became anxious, knowing the next one was sure to hit soon. The worry was always- would he recover from this one, or would this be the one that takes him? Perversely there was almost a sense of relief when the seizure had happened- at least it was over and he was ok.

Living like that was exhausting. Being constantly on high alert, never sleeping just dosing. I slept holding Hugh's hand either through the bars of his cot or with him in the bed next to us so I'd know if he stopped breathing. We had no monitors then, no oxygen, no bag and mask. Just Stephen and I giving mouth to mouth to our baby at all hours of the day and night. 

The SATs monitor gave us some relief knowing that if we were too exhausted for our seizure-sixth-sense to kick in it would alarm when his oxygen levels plummeted. Then we were provided with a bag and mask and oxygen to resuscitate him, which felt more calm and controlled than giving mouth to mouth. 

As the gap between the seizures grew, thanks to the ketogenic diet, the danger seemed less imminent. As month after month passed without Hugh turning blue or needing mouth-to-mouth the adrenaline eased and whilst I wasn't quite poised at the starting line, ready to dash at the gunshot I was still hovering, waiting, watching. 
I always feel like someone is watching me!

Hugh continues to have seizures about 3-4 times a week, mostly at night. They tend to just involve some teeth grinding and odd movements. He continues to breathe throughout, they don't upset him so we just let them pass naturally. We had a huge period of 9 months where he hadn't stopped breathing but lately they've been creeping back in. Illness is always a worry, it's a well known trigger for seizures and this has certainly proved to be true for Hugh. It doesn't have to be a significant illness either, simple coughs and colds can send Hugh's brain activity into overdrive and before we know it he's being blue-lighted to the nearest hospital. He's been very ill and not had bad seizures though and he's been fine and had horrendous ones. He's a little conundrum. The unpredictability of it is unsettling. It could literally happen at any time, with no warning.

So we watch and we wait.

The events of the last few months have thrown me a bit. I'd kind of hoped he'd grown out of the scary type of seizure, but if anything they have returned with a vengeance. Instead of being controlled with rescue medication in the house, he's needed hospital admissions and IV drugs to bring him round. The past still haunts me and I dread the day we ever return to living like that. I hope and pray it won't come to that though. We're back at the stage where our reactions to the SATs monitor alarm are lightening bolt, whereas previously I'd amble in fairly confident it was set off by a wriggly toe. I'm constantly checking him in the mirror while driving and keeping him close at all times. It's been just over a week since he last stopped breathing so it'll be a while before I'll be ready to relax a bit. In the meantime Hugh continues to be his happy cheeky smiley little self, oblivious to the extra worry he causes. 

Monday, 22 September 2014

Vote For Splats (please)

When Sean was a baby I brought him to all the groups – mother and toddler sessions, stay and play, rhythm time, baby signing ...  More often than not I was marginally embarrassed that he was more interested in plug sockets and trying to escape out of windows than in signing anything and would rather eat the maracas than shake them.  But it was all par for the course.  I exchanged pleasantries with other parents and for the most part both Sean and I enjoyed ourselves.

When I had Hugh, I had to contend with two children under two.  Trying to get both boys fed and dressed and bundled into the car to attend any mother and toddler groups was like mission impossible.  Invariably there’d be a last minute emergency nappy change just as I opened the front door and we’d rock up embarrassingly fashionably late all flushed and unkempt looking. But we tried and succeeded on many occasion.

As Hugh got older, attending groups became more and more awkward.  In fairness, no-one intentionally made it difficult, but I found it hard to watch the other children progressing while Hugh did little more than sleep.  Investigations into his delays were only just beginning so I had no handy answer to explain why he still wasn’t rolling/sitting/reaching for toys.  He still doesn’t have a diagnosis so that neat little answer continues to elude me.  As other parents celebrated their child’s progress I felt increasingly uncomfortable and as the gap between Hugh and his peers grew ever wider I began to feel like I didn’t belong.

The 'SPLATS Mums' 
I was lucky enough to find KIDS – a charity that provided short break respite sessions for children with additional needs.  I vividly remember bringing him in on his first day and knowing that he fitted in there.  It took some getting used to of course – accepting that my child was disabled enough to go to a group for disabled children was quite upsetting at first – but it was perfect for him and he fitted in well.  I met other parents, like me, and we bonded over the worries we had for our children; worries I couldn’t have even contemplated when I first had Sean. 

Sadly, due to government cuts, the funding for KIDS was reduced and the service they provided changed in 2013.  We went on one last outing to the farm with some of the children and parents from KIDS and we all reflected on how we’d become firm friends.  KIDS had given us a support network at a time when we needed it most.  We’d made good friends with people who understood the difficulties having a child with disabilities can bring.  We’d found a place we could belong.

I confess when the discussions about starting our own group began, I agreed and nodded, never imagining it was more than wishful thinking.  But the discussions continued way after that visit to the farm and plans started to be made.  We were all so grateful for what KIDS had given us; we were acutely aware how valuable a resource it was.  What of the other parents who, like us some two years previous, felt isolated and alone, where would they turn for friendship, advice and support?  Where would they bring their children to play and learn, where they felt accepted and valued and included?

And so S.P.L.A.T.S was born.

S.P.L.A.T.S : A place where special children can play and learn together and their parents and carers can get advice, talk and access support.

Having fun at SPLATS

We held our first fundraiser in November 2013 and were up and running in January 2014.  We’ve gone from strength to strength since then, providing support to almost 20 families so far.  Each session we provide a mixture of play based learning appropriate to the child’s developmental needs and fun sensory, messy or craft activities.  We offer a friendly and supportive ear for parents/carers and encourage friendships between the families that attend.  We’ve recently brought in external agencies to lead a fun filled singing and music session and we’ve held a group session at the local donkey sanctuary, where the children could each have a ride on the specially trained therapy donkeys. Here’s what some of our group members have to say:

“I just wanted to say what a wonderful time ... [we] ... had today.  This group is just what I needed.  Although we do attend other groups, they are mainly about ...[my son] ... and his needs and developments and it can be quite daunting/isolating.  This group allowed him to have his needs met whilst allowing me a bit of adult conversation and a cuppa.”                                             (S.P.L.A.T.S parent) 

“This group really made me feel supported and accepted”   (S.P.L.A.T.S parent) 

“Thank you for inviting us and making us feel so welcome.  You are doing an amazing thing.  Keep up the good work”                           (S.P.L.A.T.S parent) 

“I just wanted to say a huge THANKYOU!!!! We loved today, all the boys had so much fun and as always it was so lovely to speak to some other people going through the same journey as us”                                  (S.P.L.A.T.S parent)

Our aim is to reach more families and to provide more frequent sessions (we currently run once a fortnight).  We’d also like to provide family and sibling sessions and to get professionals in to give talks and offer training in relevant areas such as makaton and paediatric first aid.  Eventually we’d like to be able to offer Saturday clubs and holiday clubs too.  

Vote for us! Please :D
In order to help us achieve these aims and so that we can beginning purchasing more specialised equipment to support and include children with a whole range of disabilities we’ve been trying to access funding from various sources.  I’m delighted to say we’ve been shortlisted for the Lloyds Community Fund and face stiff competition from other worthy causes in the area. 

So this post is a ‘begging for votes’ kind of post.  We’d all really appreciate it if you could vote for SPLATS and share, share and share this post some more.

Here’s how you can vote:

By Texting: VOTE TRN to 61119

By tweeting: #COMMFUND TRN

Just please remember to confirm your vote via email.

And if you need more convincing as to why we deserve your vote, here are some of our gorgeous kids having fun at our sessions. 

Thanks everyone, I’ll let you know how we get on. :D

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Thursday, 24 April 2014

The Wonder of Hugh

When no-one else can understand me ...

A medical mystery
A curious conundrum

He’s not straight-forward our little Hugh. Or to steal a phrase from a lovely friend he’s ‘Hughnique’

I’ve written before about how I struggled to accept Hugh’s lack of diagnosis at first and how I eventually began to reach a point of acceptance. (If you want to read them you’ll find them here and here)  There are days I still long for a diagnosis – when he’s ill and can’t tell me what’s wrong, when I think about the future too much – but mostly I just sit back and take it day by day. 

He is who he is. 
He’s my wonderfully smiley, cheeky and happy, lovely little Hughie.

Friday 25th April is Undiagnosed Children’s Awareness Day – a day for those who don’t fit neatly in any diagnostic boxes to stand up and be counted.  There are lots of events around the country, a fabulous video – you can see it here, a twitter campaign: #itsamystery and a great blog hop where anyone (not just SWAN families) can share their experiences of, or show support for, being undiagnosed.

This is my entry- short and sweet this year (unusual for me). 

So I’ll leave you with some (slightly tweaked) words from The King himself.  Feel free to sing along.

And when you smile the world is brighter,
You touch my hand and I’m a king,
Your kiss to me is worth a fortune,
Your love for me is everything.
I guess I’ll never know the reason why,
You love me like you do,
That’s the wonder,
The wonder of Hugh.

Wednesday, 19 March 2014

Turning Four and Starting School

This time four years ago I was gearing up for Hugh's imminent arrival. The benefit of being induced early (due to gestational diabetes) is that you can plan and prepare in advance. Admittedly I didn't expect Hugh to take three long days to finally show himself, but I'd organised childcare for Sean while I was in hospital and expected the whole process to go relatively smoothly. Hugh though, as I've since learnt, doesn't do anything the way it's expected, so after a short, but scary, stint in intensive care, then the high dependency unit and then the special care unit, he came home to meet his big brother.

Like most people, I didn't commit when asked 'are you hoping for a boy or a girl?', "so long as its healthy, I don't mind", I'd reply. But if pushed, I'd usually confess that since the two would be just 14 months apart, then another boy would be nice. I imagined two brothers, so close in age, chasing each other, playing football together and fighting. I pictured myself separating wrestling toddlers and settling disputes over cars. I imagined a house of noise and chaos during the day and of best friends in bunk beds, giggling and conspiring in the darkness at night.

Birthdays, like many annual events, seem to encourage you to look back and reflect.  I've approached Hugh's birthdays with a mixture of feelings over the years; always thankful and relieved to have reached another milestone, but also acutely aware of the ever widening gap between him and his peers. 

Since September, Hugh's fourth birthday has been a shadow lurking in my mind. The first sinking feeling came with the arrival of the school selection forms. I'd received them the previous September for Sean and filled in my school preference online, excitedly sharing the process with Sean. Hugh's forms lay ignored for months, until I finally threw them in the bin. 

I remember clearly the time I was told Hugh would need to go to a special school. He was only about a year old then. I was devastated- I'd really hoped he'd catch up enough to go to school with support. I have nothing against special schools, I think they are the right environment for many children, but I doubt anyone ever hopes for that for their child. I am delighted with Hugh's school (he's started in the nursery part time) and I know it is the best place for him, but with his fourth birthday approaching, I can't help but imagine what might have been.

Hugh's not a baby or a toddler any more. He's a four year old, preparing to go to school in September. But Hugh's not running around the playground while he waits to pick his brother up, he's not impatient to start 'big school' like Sean. It's not him being chased by his brother and his mates in the morning. They won't be discussing teachers or school dinners or playing together at lunch. Hugh won't follow Sean around the playground, delighted to be friends with the big boys. Sean's outgrown school uniforms won't have a change of name-label this summer and a quick shift to Hugh's wardrobe. 

This time last year, I took Sean to celebrate mass with the then-Reception class. He watched in wonder as the older children said their prayers and I told him that in a few short months he'd be just like them. He couldn't wait to start and was delighted with his little picture of St. Joseph, the patron saint of the class, that he was given at the end of mass. Today Hugh and I watched Sean reading in his class mass. They gave out little pictures of St. Joseph to all the children due to start reception in September, just as they had the year before. These would have been Hugh's class mates. Some of them might have been his best friends. 

But, at the end of mass, instead of waiting to chat to the other parents and meet the children he'd be starting school with, I took Hugh, and his little picture of St Joseph, to the special school around the corner.

Monday, 10 March 2014

Those who can, do ...

My name’s Emma and I’m a teacher.
photo credit

There, I said it, like a confession at a meeting for alcoholics anonymous. 

Except it’s not true, not really, not any more.  You see, I was a teacher, long ago before Hugh and his medical complexities came into my life.  I like to think I was a good teacher.  I enjoyed it.  I worked hard.  And yes, I had 13 weeks holiday a year!

Being a teacher defined me somewhat.  I was proud of my profession and what it said about me.  (That was before Mr. Gove went on his teacher-bashing campaign of hate).  I taught at a mainstream primary initially, and then went on to teach children with autism in a special school.  I did a degree at university, a PGCE and even started a Masters in Special Education all to be able to teach and further my career.

My name is Emma.  I haven’t taught in four years.

I returned to work briefly between having the boys (there’s only 14 months between them) and my intention was to return to work part time after having Hugh.  I expected he’d attend the same nursery as Sean.  Some six months after having him, I had to reconsider – I didn’t think he’d cope in nursery, so mum and I planned that she’d also work part time and have Hugh on the days I worked. Not returning to work wasn’t an option financially.  I knew I’d miss the boys while I was at work and at times dreaded the thought of going back and leaving them, but I enjoyed teaching and part time hours was a great compromise. 

Hugh developed seizures just as I was due to return to work.  School were great and I extended my maternity leave for a further three months.  Week after week was spent back and forth to the hospital for either routine appointments or desperate emergencies.  We began getting recognised by the paramedic crew he was spending that much time in ambulances.

I vividly remember sitting by Hugh’s hospital bed after another late night blue-lighted trip to A&E and asking how I could return to work to look after other people’s children, when my own needed me so badly?  How could I concentrate on doing a day’s work if Hugh was fighting for his life in hospital?  But how on earth could we afford to live if I didn’t work?

I postponed returning to work for a further six months – again, the school were brilliant and understanding – yet as the six months drew to a close it became increasingly apparent that Hugh was a very poorly little boy.  I officially handed my resignation in when Hugh was 14 months old, around the same time we were told to prepare for his end of life.

Hugh, thankfully, has proved to be a fighter and is fast approaching his fourth birthday, stronger, healthier than we could ever have predicted.  His needs are still complex and the risks are still there – he can stop breathing at any time, yet he is able to attend school part time, with a 1:1 carer and we expect he will be full time from September.

With all these hours at school then, it makes sense that now, at last, I can consider returning to work.  Becoming a parent has, I’m sure, made me a better teacher, becoming the parent of a disabled child has taught me so many important lessons that I know will have positive impact on the way I teach.  I am in a unique position of really being able to empathise with the parents of the children I am teaching.

You’d imagine returning to work would be easy.  Hugh’s appointments are few and far between now and his health is relatively stable.  Teaching ensures I don’t have the additional worry of sourcing childcare in the school holidays either.

However, it’s not that simple. 

The unpredictability of Hugh’s condition means that he can be fine one minute and in the back of an ambulance the next.  He can, and does, get ill quite frequently too.  Unreliability doesn’t feature on many job descriptions.  A call 10 minutes before I’m due to start, or dashing out of class half way through a lesson, won’t sit well with many employers.  For this reason I considered supply teaching – working days of my choosing, avoiding illness and minimising the risk of letting people down at the last minute.

But I also have to drop two boys to two different schools each morning and pick them both up each afternoon.  Sean could go to afterschool club and it would be relatively easy to ask a friend or grandparent to drop him off or pick him up.  Getting Hugh to and from school is trickier.  He has a carer from 9-3.30 who stays with him at school.  Other than his carer, and me, Stephen and the staff at Acorns, no-one else is trained to care for Hugh.  Caring for Hugh involves being able to resuscitate him should he require it - giving mouth to mouth or using a bag and mask, administering oxygen, giving emergency rescue- medication for his seizures and being able to tube feed.  Furthermore, you’d need a car big enough to house his enormous special needs buggy, a specialist car seat and the strength of a bear to lift him.  In order to drop him off and pick him up, I could only work between the hours of 10 & 2 – can’t see that fitting in with many school timetables.

Photo credit
I’m not really sure how this situation can be resolved, but I feel the choice of being able to return to work has been taken from me.  I feel I have so much to offer since having Hugh and I trained long and worked hard to be able to do a job I loved.  Having a disabled child is three times more expensive than bringing up a typically developing child (See Contact-A-Family).  We’ve moved house so we can adapt it for Hugh which has resulted in a bigger mortgage, increased council tax and increased gas and electricity bills.  Heaven knows we could do with me returning to work.

The irony of the special needs teacher, not being able to teach after having a child with special needs has not escaped me.

Thursday, 6 March 2014

A Tribute To Acorns Children's Hospice

The first time Hugh’s newly-assigned palliative care nurse mentioned Acorns to me, I shook my head and refused to be drawn into the conversation.  There was no way I was taking my baby to a Children’s Hospice. No way.  Hugh was only 18 months old. 

Hugh's first visit to Acorns
He’d been blue-lighted into hospital just two months earlier with seizures that wouldn’t stop; seizures that caused him to stop breathing again and again.  It wasn’t the first time it had happened, but this time was different, this time was worse.  We’d imagined he’d come around, as he always had done, tired and subdued, and that we’d be discharged some time later, ready to repeat the whole process again maybe hours, maybe days, maybe weeks later.  But this time he didn’t recover.  This time he was moved to the high dependency unit.  This time he was heavily sedated.  The terrifying things we’d dealt with so far – waking at night to him not breathing, giving mouth to mouth in the living room, paled into insignificance as, when the seizures finally stopped, we were presented with the shell of our baby, a ghost of his former self.  He’d always been delayed in his development but he’d made progress, albeit slow.  But now we were faced with a child so sedated he had to fight to even open his eyes.  And as he gradually adjusted to the sedation, it became apparent he couldn’t hold his head up anymore, he couldn’t move his limbs, he couldn’t even smile.  My heart broke.

We had ‘the talk’ then in hospital.  We were ushered to a side room while nurses stood guard around his bed.  I knew what was coming, but still couldn’t believe or accept the words I’d been told.  Hugh’s condition was life threatening.  He was unlikely to live to be an adult.  In all probability his seizures would kill him.

It’s a strange sort of way to live, knowing that at any moment your child might be taken from you.  You try to adjust.  You develop a new kind of normal.  But it’s there lurking in the back of your mind all the time.

We took Hugh home eventually.  He was still heavily sedated, still unable to smile and was now fed through a tube in his nose.  We’d taken him into hospital for something that had become almost routine to us, and we left some time later with a palliative care nurse, a feeding tube, oxygen and a bag and mask so we could resuscitate him, and a child that no longer resembled the one we’d grown to know and love.

Our palliative care nurse broached the subject of using Acorns again and again, tentatively, tactfully, until one day I agreed to listen.

Hospice conjures up so many images; death, dying, misery, sadness, suffering.  I didn’t want to associate myself or my child with any of those things.  I was strongly in denial over Hugh’s prognosis, I wasn’t prepared to accept that future for my child.  But what finally tempted me to even remotely entertain the idea was that it might enable us, as a family, to spend time with Sean our eldest whilst Hugh was cared for by nurses.

Acorns treat the family to a day out at the zoo. (June 2012)
By this time Sean was still only two and a half – a baby himself by anyone’s standards.  He’d been bundled into the back of cars of friends whilst I rushed off in an ambulance more times than he’d been to the park.  He’d visited his baby brother in hospital attached to drips and wires more times than he’d been to parties.  He’d been kept late at nursery and picked up by his grandad countless times after I’d phoned from A&E in a panic.  He’d be tucked in at night by me or his Dad and he’d wake up in the morning to find his uncle looking after him instead because Hugh had been rushed into hospital again.  He’d seen me give mouth to mouth to his baby brother while he watched Fireman Sam time and time and time again.  He was a baby himself; just a baby.  The guilt I felt at not being able to think about Sean’s needs was what made me consider Acorns as a viable option. 

Our first attempt to visit was thwarted as just half way there Hugh stopped breathing in the back of the car.  We stopped at the side of a busy dual carriageway and I knelt in the mud and gave him mouth to mouth as cars whizzed by.  I was shook by that one incident more than any of the hundreds of previous times before.  I became terrified of even leaving the house, just in case.  I could no longer turn my back on Hugh – there was always the very real risk he wouldn’t be breathing on my return.  It meant that every single moment of every single day, I was on high alert, ready to respond should it happen again.  And it did.  Again and again and again.  It was exhausting. 
Sean (age 3) in his favourite costume at Acorns

We finally managed to visit Acorns and were welcomed like long lost family.  It was warm and inviting and brightly coloured and didn’t smell of hospitals.  I loved it and hated it in equal measures.  I loved the atmosphere and warmth and all the opportunities for both the boys.  Sean was taken away by a volunteer befriender to eat biscuits and dress up as Sully from Monsters Inc, while we drank tea and talked to the nurses.  The sensory room was just magical and the hydrotherapy pool promised us the opportunity to go swimming together as a family – something we’d never managed before. 

But... But ... But ...

As we wandered the grounds and ventured into the beautiful, spiritual, peaceful tranquillity of the memorial gardens and I seen the names etched on stones in the rivers and the birthday balloons and flowers, I had to bite back the tears and swallow the huge lump in my throat.  I couldn’t bear that future for my baby.  I still can’t.

But the staff at Acorns understand that.  They expect and appreciate and address your worst, most terrible fears.  Yes, dying is an aspect of life at Acorns.  They provide wonderful end of life care for countless families.  They support them in preparation for that, through the final stages and beyond.  Bereaved families continue to receive support from Acorns for as long as they want it.  Thankfully I haven’t had to consider this aspect of their care in too much detail yet, but I know one day I might and (I can say this now, but it has taken me a long time to get to this stage), I am glad that Acorns will be there to guide and support us if and when that time comes.

Acorns don’t just offer end of life care though, they offer respite too.  Each week the hospice at Selly Oak look after up to 10 children with complex medical conditions and high levels of care to give their parents and carers a break from the enormity of their role. 

Being able to swim together at Acorns is really special
I suspect at first I was a nightmare parent, though no one ever made me feel that way.  I felt so wholly responsible for keeping Hugh safe, keeping him alive, that I daren’t trust anyone else.  Initially Hugh and I had ‘days out’ at Acorns.  We’d swim together or I’d sit and have a cup of tea while a nurse put on his feed.  A break, a little break, and the chance for me to talk to a kind and friendly and understanding ear.  Gradually, slowly, I progressed to allowing Hugh to be taken to other areas of the building while I read and drank tea.  Then Stephen and I would leave for an hour and take Sean to the playground at Cadbury World or to the Park just minutes away.  We were away from Hugh, but not too far.  Tiny step, by tiny step, the wonderful staff at Acorns supported and helped us trust other people with his care.  They never patronised me or ridiculed the difficulty I had in letting go.  They have always accepted that he is my baby and have made me feel that they feel honoured to be allowed to care for him.  I think the staff there genuinely do care for Hugh, I mean really care about him.  I’d go so far as to say I think some of them love him.

We slowly, gradually moved from day-care to overnight care, with the whole family staying upstairs while Hugh was cared for by nurses downstairs.  We could visit him however many times we wanted.  And I did.  Sean loved it.  There’s an xBox in the family suite.  He couldn’t believe his luck.  We’ve not stayed there for a while and he still asks now if we can go to stay. 

Hugh has stayed there for two and three night breaks – by himself – since then and I am OK

Hugh and I in the wonderful sensory room
with that.  Better than OK, I enjoy it.  I enjoy myself.  Last weekend I danced and drank beer and danced some more until the wee small hours of the morning, safe in the knowledge that I wouldn’t have to get up with Hugh countless times in the night.  I had a brilliant night out with my husband.  Without Acorns, I couldn’t have done that.  We’ve both taken Sean to the cinema and out for dinner and to a cold and noisy swimming pool with slides.  Without Acorns, we couldn’t have done that.  Acorns have helped bring a little normality into our crazy, exhausting, medically dominated life.  They’ve allowed me to be me again.  They’ve helped me trust others.  They’ve enabled me to spend time with my husband.  They’ve helped us both spend time with Sean, together.  They helped us go swimming as a family and spend quality time together, all four of us.  They’ve introduced me to other mums and other families in similar positions so I don’t feel so isolated and alone.  There’s a Dad’s club too (though Stephen hasn’t joined – yet), and a siblings club so Sean can meet other children who will understand the huge mix of emotions that he must feel. 

I wish, with all my heart, that Hugh didn’t have a condition that was life threatening; with every fibre of my being I’d love to just expect him to grow old and grey, rather than it just being a whisper of a hope.  But this is the life he has, the life we have, and I couldn’t think of anybody better to support us and guide us and help us through this emotional, exciting rollercoaster of life, than Acorns.

***** ***** *****

My husband Stephen and I are doing a skydive in May (eeeeek!!!!) to raise money for Acorns Children's Hospice.  I am absolutely terrified but it'll be worth it to be able to thank them for all they have done for us.  If you'd like to sponsor us, you can do so by clicking the link here:

JustGiving - Sponsor me now!

Tuesday, 4 February 2014


How do I explain something that is beyond explanation?
How can I make sense of something that makes no sense at all?
How do I breathe when the air has been sucked from my lungs?
How can my heart beat when it has been ripped from my chest?
How can I keep living when I feel so dead inside?

The sun still rises,
The birds still sing,
The world keeps turning.

But you have gone.

And I am lost.

***** ***** ***** ***** *****

For Lyla, the precious little angel that is being laid to rest tomorrow. My thoughts and prayers are with her family.  They have set up a just giving page in Lyla’s memory – you can find it here.

Friday, 24 January 2014

Some days

Life with a disabled child probably isn't what you'd imagine. Most of the time it's just, well, normal. We do the same things that most people do- get up, get dressed, do the school runs ... Some things are more difficult- like manoeuvring a wheelchair sized special needs buggy down the steps at our house and up kerbs when someone has parked in front of the dropped kerb at the school gates again; and some things are easier - like getting a parking spot at the supermarket - the blue badge comes in very handy then. But day to day,the small but significant differences and the larger more obvious differences in our lives are just part of our new way of living.

Hugh not having a diagnosis is part of that normal. I once yearned to know what was 'wrong' with him, what the future might hold; but as time went on it didn't matter so much. He's just Hugh and what will be, will be. Yet not having a diagnosis does present with the difficulty of not knowing how his condition may progress; he might improve- gradually developing and gaining skills, or he might regress and deteriorate. Not knowing what is wrong, not knowing a cause means that anything is possible. It s a fear that many SWAN (Syndrome Without A Name) parents face. Conversely it is also a source of hope because, well *anything* is possible, and although unlikely, maybe one day Hugh will sit or stand or walk or talk... Who knows?

A little SWAN friend of Hugh's has been struggling recently, her seizures have taken a terrible toll on her and she has been moved from the hospital to the hospice to prepare for her end of life. She has just turned one. No parent, no family should ever have the discussion that they have had; are having. No one should ever have to face the reality of such a bleak prognosis. It is a stark reminder of the conversations we had when Hugh was at his worst, of the book I was given on how to plan his funeral, of the story shared with Sean about special rooms in heaven. No family should have to suffer that way.

I hope and I pray that this special little girl will make a miraculous recovery. I pray that her family find the strength to cope. And selfishly I pray that I will never again face that reality, though I know one day I might.

Most days our lives are just the same as yours.

Some days they are not.