Saturday, 21 January 2012

Dealing with setbacks

In some ways, with Little H we seem to have had one set back after another.  We started off thinking everything was fine and then, often suddenly, things would take an unexpected turn for the worse.

Little H having his first cuddle in the neonatal unit.
For example, when H was born full term at 6lb 7oz, despite a few complications during pregnancy he seemed to be a healthy little boy.  Two hours later, he was rushed to the neonatal unit with breathing difficulties.  It transpired he had pneumonia, he was moved to intensive care and we were warned he may be unable to breathe for himself.  In the space of just six hours we went from the thrill and joy of meeting our beautiful son to, the terror and fear of the unknown.  We went from cuddling and kissing his tiny face, marvelling at the miracle of new life, to watching him struggle for breath in an incubator, covered in tubes and wires.  We were still receiving congratulatory text messages in response to the early morning announcements we had made. Our precious little child should have been dressed in his new babygro, getting cuddles and kisses from his mummy, daddy and big brother, but instead he lay naked, vulnerable, out of reach, behind glass, too poorly and frail to enjoy those early days with his family.

And how did we cope with that unexpected setback?  I genuinely have no idea.  I was numb, exhausted and in shock.  I barely remember those days.  You have absolutely no concept of time or ‘real life’ when you spend every waking minute in hospital.  It is a surreal existence.  But we got through it.  We were the lucky ones.  We took our baby home.

Further setbacks came when Little H was six months old and although I had suspected for some time that he wasn’t developing normally, it was still heartbreaking when they decided to investigate further on account of his head failing to grow adequately.  X-rays, blood tests, MRI’s followed.  I coped with this setback by googling everything, trawling the internet for all the possible explanations, preparing myself for the worst possible outcome while praying for the opposite.  My husband, Mr M coped by almost denying there was a problem.  Not so much burying his head in the sand, but explaining away the delays – he was just a bit slower, his brother had been particularly able, he spent time in the neonatal unit.  The lack of head growth wasn’t as easy to explain, but perhaps it was because he had been so ill through reflux?  Rather than angering me, his denials helped. I think we worked well together – I kept him realistic; he kept me positive.

Worse was to come in the form of the results.  On the same day we found his brain was underdeveloped, we also discovered he had a rare chromosome abnormality.  This was a devastating blow.  His chromosomes couldn’t be fixed.  My coping strategy again was to go to the internet and try and diagnose the child myself.  Mr M’s was to look at the positives once again.  I found a great charity – Unique – who sent me information and supported me.  Feeling proactive and like I was doing something helped me cope.  So I contacted as many agencies as possible – Early support teachers, KIDS, hoping that by the time we reached the top of their waiting list I wouldn’t actually need them.  We did though! 

I don’t think we ever had time to sit down and really process the information.  I remember being particularly upset that Little H might not be able to go to the same school as his brother Cheeky who is just 14 months older than him, but other than that we barely had a chance to consider the future before the next major setback just a couple of weeks later.

Little H stopped breathing. 

He was pure blue when I found him.  I have never been more terrified in my entire life.  I’d like to say I’ve never again been as terrified, but H has terrified me regularly by performing the same trick repeatedly since then. At least once a week, but sometimes as often as 10 times in 12 hours.  I don’t just mean he has long pauses in his breathing.  He literally just stops! 

Tests and questions.  Tests and questions. Four months later, these episodes were eventually diagnosed as epilepsy.  I worried that his brain was just forgetting to tell him to breathe – it wasn’t doing a great deal else successfully – and was told that whilst in most people, the body’s first and most natural instinct is to breathe, with H this might not necessarily be the case; there was every possibility that these episodes were in fact life threatening!  So when the epilepsy diagnosis came, it was what I had been hoping for, wishing for, praying for.  Surely the right treatment would help.  And at first everyone was positive – “don’t worry about the fact he doesn’t breathe, seizures aren’t that serious until they reach 30 minutes”.  We adjusted to the new diagnosis and tried to live our lives.  It didn’t even seem to be a setback as such, at first.

And then, last summer, the seizures just kept on coming! The medications weren’t helping and an unfortunate run of illnesses meant we spent much of the summer in the High Dependency Unit.  And it was here that the setbacks came thick and fast; not allowing time to breathe, never mind time to process or deal with or cope with the new information.

First was the look of panic when a nurse witnessed his seizures – I’d described them repeatedly but it appears I hadn’t been doing them justice.  She told me later, she had been terrified and had worried about him all day after her shift had ended.
Then was the move to HDU.
Then the arrival of the paediatrician who spoke about the need to sedate him heavily with an unusually large dose of an anti-epileptic- almost in an attempt to reset his brain and stop the seizures, like powering off a computer.
Then was the “big talk” with the consultant, we were taken from HDU to a private room (Alarm bells should have been ringing here).  Mr M and I sat while our Consultant Paediatrician explained the risk of SUDEP (Sudden unexplained death in epilepsy)  but that not only was H at an increased risk of this but that his seizures themselves posed an increased risk because during his stay in hospital it had become apparent that not only did his oxygen saturation levels drop dangerously low during a seizure (Obvious by the colour change but sometimes recording as low as 7%) but that this also affected his heart rate causing it to drop.  Basically, within the space of just over 3 minutes, it is possible for H to go into respiratory and cardiac arrest.

So how do you deal with a setback like that?  Tears.  More tears.  He was so poorly at that time that we genuinely couldn’t concentrate on the bigger picture.  He was so heavily sedated we could barely recognise him.  There was hardly a glimmer of life there.  So we concentrated on getting through those days in hospital.

And when we got home and had time to think, the next big bombshell hit. 

We were assigned a palliative care nurse.

Palliative care?  I remember that from when my Dad was dying.  Palliative is not a good word!  I realise now that we had, in part had this explained to us, but I hadn’t/couldn’t/wouldn’t hear(d).  I rang the consultant to confirm – hoping there had been some mistake. Nope. On account of his epilepsy, his vulnerability to illness and infection and the fact H was so physically delayed it was unlikely he would reach adulthood.  It wouldn’t be surprising if he didn’t reach secondary school age.   

I didn’t see it coming.

And that setback?  How have we coped with that?

I genuinely have no idea.  I have bad days where I cry and get angry; days when I am too scared to leave the house; days when I doubt my ability to cope.  But generally, when I’ve started to get to the lowest point, something worse has happened and I’ve had to pull myself together and get on with it. It sometimes feels like H is teaching me a lesson – “you think this is bad?  Just wait for my next trick!”

If anything, it has taught me to appreciate what we have got; that things have been, could be, and probably will be much worse!  I’m not sure how we have got through it, but at the end of the day, Mr M and I have two wonderful, beautiful sons who we love and who need us.  Regardless of the challenges ahead we just have to keep on getting out of bed and facing the day.  Eventually it becomes a new kind of normal.  The setbacks and difficulties aren’t easy, but as long as I remember how much I love my boys then I will get up and fight another day.


This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the world.

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Friday, 13 January 2012

Me time? You’re kidding, right?

I think ‘me’ time goes out of the window a bit when you have children anyway, but when you have a child with additional needs it’s a whole new ball game.  Finding a babysitter?  Pah!  You’ve got to be joking!  In order to look after Little H, you need to be:
~        trained in basic life support, and be prepared to use it,
~        trained and prepared to use a bag and mask,
~        trained in administering emergency rescue medications,
~        trained in administering oxygen
~        trained in NG tube feeding
~        know him well enough to recognise quickly when something’s ‘not quite right’ and recognise very subtle seizure activity
~        and most importantly – nerves of steel
There’s also the three year old Cheeky to contend with if that wasn’t enough.

Funnily enough, we don’t get too many offers of babysitters!

So, my husband and I have nights out separately.  I genuinely think I would go mad if I didn’t get out occasionally, it’s just a shame we don’t get to do it together.  We are still waiting for support from the Complex Care nurses (four months later ...) and have just started spending time at our local hospice so there is a real possibility in the future that we may get to spend time together, if we are brave enough to leave H in somebody else’s care that is!

For me, spending time away from the house doing ‘normal’ things saves my sanity; even if it is something as simple as popping to the supermarket without any children in tow. Wow, what an exciting life I lead!  More interesting ‘me time’ is spent drinking copious amounts of wine with friends (often), going to yoga (sometimes) or zumba (rarely).  OK, so most of my free time, when I’m being me and not just ‘a Carer’ is spent drinking wine, but hey, it works for me!  :D

What about you?  How do you spend those precious hours off?


This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the world.

Please join the cause by joining the facebook page -

Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday

Reading and following the Special Saturday Blog -

Wednesday, 11 January 2012

Little Steps

It has been wonderful this week to begin noticing a change in Little H.  They are almost insignificant to those with children developing at the normal rate, but to us they are huge milestones, filling our hearts with joy and opening up windows of hope.

The first happened at a party we went to at the weekend.  The lights went out, the room plunged into darkness and the children shrieked, screamed, sang happy birthday at the tops of their voices.  Little H’s face first registered shock, then his little lip began to tremble and he let out an almighty cry.  The adults looked around guiltily and hushed their kids, telling them to calm down and not to upset H.  But me and the Other Half grinned at each other and clapped our hands in delight.  I think everyone thought we were mad.  But it is the first ‘normal’ response Little H has had!  It was dark and noisy and unexpected.  Of course he should be frightened.  Bless him.  Just a couple of months back, on bonfire night, at that same house H hadn’t even registered the fireworks going off just a few (dangerously close) feet in front of him.  Not a blink, not a turn of the head.  Nothing!  It was as if he could neither see nor hear them.  So this shock and fear is a huge development.  One, that at 20 months old, is finally starting to see him develop further than that newborn baby phase.

The second big development over the last week is H’s improved eye contact and his response to us.  He is really looking at us.  He turns as I walk in to the room.  And smiles!  He smiled at me!  Repeatedly!  We’ve been playing rough and tumble and tickling games and he has been laughing.  And he has even turned to watch his brother and smile.  Cheeky is delighted.  We all are.  To finally start getting a more consistent response from him, an acknowledgement that he knows we’re there and is happy about that is such a precious achievement. 

I would like to treasure this week, these little steps and these big feelings forever.  

I am linking this old post to Tricky Customer's  Celebrate Blogging Challenge. This world of special needs and disabilities has many rocky roads, we will find ourselves on many rollercoasters along the way. But, there are a lot of positives. Through our adventures so far, we have met a lot of amazing, supportive people. It has made us stronger. We have learned to look at the world through new, wider eyes and find ourselves celebrating what to others may seem such a small achievement but to us, it’s the world. It’s a tough world, but there is so much to celebrate. Our children. So please join Tricky Customer each week and post about what there is to celebrate in your world during the past week. I’m looking forward to reading your posts and celebrating with you.

Tricky Customer Celebrate Blog Hop

Saturday, 7 January 2012

I actually have two sons.

I have two boys you know? You might not have realised that.

I have Little H - my wonderful, beautiful and very time consuming Swan (Syndrome without a name). And there's Cheeky too.  He's just as wonderful and beautiful and cheeky (as his name suggests) and charming and cute . . . and a little bit neglected.

Everything in our lives revolves around Little H.

~Cheeky woke at 6:30 Christmas morning and came in to our bed. Little H's feed didn't end til 7 (he's NG fed) so we didn't tell Cheeky it was Christmas til then.
~It's Cheeky's 3rd birthday soon.  He'd like to go swimming but we can't take H to an ordinary pool, just in case he has a seizure.  So we contacted the local hospice and they will fit us in for the day and we can use their pool.  If H has a seizure then there's nurses near by.

Every single simple day to day activity is altered and organised and changed to accommodate H's needs.  Cheeky just has to fit in with them.

Cheeky isn't quite 3 yet but he has had to grow up so fast. I compare him to friends' children of the same age and older and can not believe how babyish they are in comparison.  Cheeky is definitely wise beyond his years.  He tells me when he grows up he wants to be a doctor so he can "give the babies tubes [NG tubes] to make them big and strong" and "help the babies breathe with oxygen".  How lovely.  And how very sad.

Tonight I was saddened to realise just how much my baby has been forced to grow up.

We returned from a friend's birthday party very late - gone 10 O'Clock. I don't normally go to things on my own with both children but I knew I had a lift home and it was at a house I feel very comfortable in.  Cheeky was very very tired and at his age that also equals very very cranky and very very clingy.  He was already upset because he couldn't sit on my lap on the way home.  Leaving H downstairs, I carried Cranky, I mean Cheeky, up to bed, assuming I could tuck him in and go.  But he wanted cuddles and was fussing - just as any tired toddler would do - but I was worried about H.  Was he still breathing? Was he having seizures?  I had to get back downstairs to check.  Cheeky wanted me to stay and give him cuddles but I had to explain I needed to check on Little H.

H was fine thankfully.  I was only away for 3 minutes, but with H's condition that is long enough.  I came back up to check on Cheeky who seemed sound asleep. I kissed him and told him I loved him.  He turned and said  "I love you too Mom.  It's OK you can go and check on H now. I'll go to sleep".

It brought me to tears that comment.  He's not yet 3 but already seems to realise the way things are and the way they will be.  Most 3 year olds see themselves as the centre of everything but Cheeky, even tired and cranky and wanting his Mum realises that H needs me more.

It saddens me he has had to grow up so much.  He is still, after all, only a baby himself.

Wednesday, 4 January 2012

Do you ever just feel like you can’t do anything right?

It’s one of those days!  It’ll pass I know.  And you’ll read this and will tell me what a great job I’m doing (I hope), how I’ve a lot to cope with, how it’s only understandable to feel like this from time to time.  Add to that I’ve been unwell of late (nothing serious – a bit of a virus) and I’m tired so it’s understandable to be all emotional etc etc.  Hang on, I’ll talk myself out of a blog post at this rate! But seriously ... do you ever just feel that you just can’t do anything right?

I just feel I’m letting everyone down.  I’m not a decent mother, a decent wife, a decent daughter, a decent friend.  My house is a tip. There are piles of washing everywhere. There’s no food in the fridge (though there IS plenty of wine). I shouted at Cheeky today and made him cry. Over nothing!  Just because I’m tired. I can barely manage a civil word to The Husband half the time and I can’t remember the last time I was able to have a proper conversation with a friend or family member and really take an interest – I’m just too tired, too distracted, too stressed to think about anything or anyone else. 

My whole life seems to be about being ‘A Carer’. Not a mum.  I seem to be doing chest physio, or thinking about it, or charging the suction machine, or setting up a feeding pump, or re-fixing the bloody tape for the NG tube for the 100th time, or chasing appointments, or reading flipping hospital letters day after day after day.  I don’t have time to play cars with Cheeky.  I can’t find time to wash up.  I can’t manage to get the two boys out to the park or the shops or anywhere.  I constantly feel guilty about all the things I’m not doing and all the things I should be doing and that just makes me more stressed and incapable of doing anything at all!!!

The respite that was promised in August still hasn’t materialised – though we are using the local hospice.  It’s not even respite I want – although an hour to have a bath would be lovely.  I just want someone to give me a hand. I just want to feel like every single area of my life isn’t slowly falling apart.

Do you know, I used to be fun.  Some days I struggle to remember the old me.  I’m not sure where she has gone.

Sunday, 1 January 2012

Goodbye 2011

In the words of a well known Coldplay song,

“Nobody said it was easy; no one ever said it would be this hard ...”

I genuinely never realised how difficult parenting a child with special needs could be.  I’d never really thought about it before to be honest.  Not really.  But 2011 brought some horrendous challenges, some difficult conversations, some crushing realisations and some terrifying ordeals, none of which could I have anticipated when in September 2010 Hugh was sent for ‘further tests’ to determine why his head was failing to grow.  Even as the harsh reality started to dawn on me, towards the end of 2010, my biggest worry was that H and Cheeky would probably have to go to different schools!  It’s ridiculous to think now that once that had been the worst that could happen.

2011 opened up a whole new world of special needs to me that I didn’t know existed.  I became familiar with words I’d never used before – life threatening, life limiting, hospice.  I discovered what it is to genuinely fear for your child’s life.  Not just once, not even twice but countless times.  I developed a new morning mantra that I say each morning as I open my eyes (that’s if I’ve managed any sleep that is), “please still be breathing, please be alive, please still be breathing, please be alive ...” – who knew it was possible to live like this?  Who knew there’d be times you could resuscitate your own child, silently begging God “please not now, I’m not ready, not like this” and when the panic is over you could just carry on?  I genuinely never knew it was possible to live and function in such a heightened state of fear, that it would eventually become normal.

But despite this, I am determined not to look back on 2011 as the worst year ever.  It is depressing and just encourages you to focus on the bad times.  And in all honesty 2012 probably won’t be that much better and could potentially be a whole lot worse.  I had some wonderful times in 2011, a day trip as a family to the local ‘pretend’ beach, H’s first birthday party – a great big pool party with all our friends and family, a lovely family Christmas that wasn’t spent in hospital.  And these are just the big things – there’s the smaller but just as significant times – the cuddles in bed in the morning with H and Cheeky, watching Little H and Cheeky in the bath or in the garden together, carving pumpkins, the look of wonder on H’s face at the Christmas lights.  And the smiles!  The truly wonderful, light-up the room smiles that would melt your heart!  2011 was full of them too!

And my hopes and resolutions for the new year?  For 2012 I’m not going to hope for answers or cures or less time in hospital (though all of the above would be nice).  I’m going to try and take it a day at a time.  I’ll appreciate the good days when we have them and try to worry less about the future. 

Thank you to all the wonderful people who have helped to make 2011 less frightening and less isolating and for giving me the strength and the hope to face 2012 head on.