Saturday, 8 December 2012

Loving Equally Does Not Meaning Loving The Same


I love both my sons dearly and equally. 

As I tuck in little H I look at his beautiful face and am filled with such overwhelming love. I caress his cheek and run my hand over his face-the on body sign for good night. I do a mental run though of the appointments and therapies the next day will bring. I check he is positioned correctly, lying symmetrically in the bed. I attach the sats probe to his toes, switch on the monitor and check his oxygen levels and heart rate. I check the angle he is sleeping at is sufficient, adjusting the gradient if his reflux is particularly bad or he is having problems breathing. And I kiss him goodnight. 

Then I go to Cheeky's room. He sleeps soundly, curled up in a ball, often the wrong way round in the bed. I lie my head next to his and listen to him breathe. Calm. Peaceful. He is nearly 4. He loves Ben 10, Disney Cars and Spiderman. He is looking forward to going to school in September. Life is straightforward. Simple. 

I lie with my head next to his, listening to the calming rhythm of his breathing. In and out. In and out. I take in the smell of his freshly washed hair and feel my heart settle, my mind still. Some nights I don't want to leave. This haven. This safe space. This simplicity. I long for the simplicity. 

I kiss him goodnight and return to my room. H's sats monitor flashes in the dim light. I check the figures again before getting into bed. 

I love both my sons wholeheartedly. 

And equally. 

And differently.

Wednesday, 5 December 2012

The Ketogenic Diet - The Story So Far. Or how the ketogenic diet saved my life/sanity!

In the time H has been on the diet,
I could have achieved this!

It has been SO long since I updated you on Little H’s progress on the ketogenic diet that I’ve had to sit down and work out just how long he’s been on the diet (you may remember I was doing weekly updates at one time).  Well ... * checks calendar* Little H has been on the ketogenic diet for a grand total of 286 days, or 40 weeks, which is incidentally the same length of time as your average pregnancy (not that either of my pregnancies were that average). 

We’ve had way more ups than downs with the diet I’m happy to say.  He hasn’t had what I’d term his ‘serious seizures’ since March – just two weeks after starting the diet.  We had a period of nearly three months that were completely seizure free and then a new type of seizure crept in and has remained since.  However, although he does still have around three seizures a week now, the severity of them is greatly reduced.  I believe we have the ketogenic diet to thank for that.

Our lives are unrecognisable from how they were a year ago.  At that time, Little H was on his 5th antiepileptic medication which was having little, if any, affect on his seizures.  He still continued to have around 30 seizures a month, the severity of which were so great that they were termed ‘life threatening’ and each one involved us having to resuscitate him, either using a bag and mask or giving mouth to mouth.  Most of his seizures lasted around two and a half minutes, which doesn’t sound that long but try, if you can, to imagine a child not breathing at all for that length of time.  I have never seen a shade of blue like it.  It wasn’t just his fingers or his lips that would turn blue but his whole body, a deep dark shade of navy blue.  It was terrifying.  If it hadn’t stopped by three minutes (I wore a stopwatch at all times) then we gave Midazolam- a rescue medication used to sedate him and hopefully stop the seizure (the standard time to wait is usually 5 minutes).  Usually it worked, but it affected his breathing so much that he turned so pale and lifeless and his skin went as cold and hard to the touch as stone, reminding me of visiting family members in the funeral home.  But at least he was breathing, albeit very shallow, and the seizure had stopped.  After giving mouth to mouth on the pavement at the back of the hospital, when I hadn’t managed to get there in time and at the side of a dual carriageway on a cold, wet day as cars whizzed past, I became too scared to leave the house.  At home I could deal with his seizures in a calm and controlled manner – the oxygen, the SATs monitor, the bag and mask, the midazolam,  the telephone, everything was close at hand and strategically placed (where most people keep photos on their mantel piece, we kept midazolam), but out in the real world? What if I couldn’t get to him in time/ get him out of his car seat/ get the bag and mask out/ what if it happened in Tesco and Cheeky (only two and a half at that time) were to run away while I was resuscitating his little brother??? The risks, it seemed, weren’t worth it.  Three minutes isn’t a great amount of time in a life or death situation and I wasn’t prepared to let my baby die at the side of the road.  So I didn’t leave the house with him. At all.

Fast forward a year later and life is a whole lot happier and the outlook is a lot less bleak.  Little H’s seizures are so subtle, that only someone that knows him well would recognise he was having one.  He grinds his teeth and stiffens his arms, sometimes grimacing or pulling odd facial expressions.  They last longer, a lot longer – sometimes as much as 20 minutes, but in that time his oxygen level isn’t affected, and his heart rate only slightly (I’ve checked on his SATs monitor) so on discussion with his Paediatrician we only give Midazolam if it continues beyond 20 minutes, as the likelihood of it stopping by itself then is greatly reduced and I was reluctant to give it any sooner, since Midazolam has such a drastic effect on him.   So far we haven’t had to give it all.  The most important point to note with these seizures though is that he is breathing!  And that for us makes all the difference.  Yes, he is having seizures and yes they are long and yes I realise there are still risks involved with seizures of any type, but when you’ve come from a place where you were resuscitating your child 30 times a month, this is a huge improvement.  This improvement has made our life bearable.  No, scrap that, it has made our life fun.  We managed a holiday this year, to Wales.  We’ve had days out as a family.  We’ve even left H with my mum for a few hours whilst Mr. M and I went to a concert.  These are things I daren’t dream of last year.  Then I didn’t leave him in the room on his own for any length of time.  On bad days, I would have to carry him to the toilet with me.  We’ve even noticed a difference in his levels of alertness, he responds so much more to the sound of our voices with smiles than he used to, he spends more time awake and is much happier and healthier generally.  He is, as so so many people have commented – doctors, nurses, therapists, staff at the hospice, family, friends – “a different child”

Other changes for H this year have been replacing his nasogastric tube with a mini button.  He had the gastrostomy in June and it was swapped for a button in September.  And he has had his tonsils and adenoids out which has stopped his sleep apnoeas and he sleeps so much better (although not at the moment as he has taken to waking at 3:30am again! Grr).  I am even in the process of moving him into his own bedroom, I’m just waiting on his fancy new hospital bed to arrive – this is another thing I wouldn’t have dreamed of doing last year.

When we started on the ketogenic diet, we were warned that it might not work.  The Holy Grail of course, was that H became seizure free and weaned of his antiepileptic drugs.  We dared not hope for that at the time, we just wanted the severity of his seizures to reduce to such an extent that we could have some semblance of a normal life.  Without a doubt, we have achieved that.  H still has seizures and is still on an unbelievably high dose of Phenobarbital, but we can go out as a family, we can make plans a few weeks in advance, we can create memories.  Happy memories.  I still panic when he pulls that face, that used to signify the start of a seizure, I still carry midazolam, oxygen and a bag and mask everywhere we go and we still aren’t brave enough to take him on a boat or a plane so for the time being anyway, holidays to our family are off the cards; but if you’d told me a year ago I’d drive on a motorway with both boys in the car, that my mum would babysit H, that I’d leave H for a weekend and visit friends, that we could go as much as two months without rushing to the hospital, that I’d be able to make plans weeks in advance – and stick to them, that I’d feel happy and hopeful for the future ... I wouldn’t have believed it. 



And I think we have the ketogenic diet to thank for that.

That’s all for now.  Apologies for the delay in updating.  Initially, I didn’t want to tempt fate, but now, we are so busy having fun that I just haven’t had a chance to do it!  :D




If you want to find out more about the ketogenic diet matthew’s friends website is a good place to start.

If you want to catch up on my post about the ketogenic diet, how it started and how we worked his feeds etc then click here.

If you want to know a bit more about the ‘dark days’, when we weren’t able to leave the house and about H’s horrible seizures then these posts will fill in the gaps.







If you missed the bit about ketogenic diet on channel 4’s food hospital you can catch it here.

A Very Special Twelve Days Of Christmas


Here’s one I pinched earlier ...I have tried but have been unable to find the original author.  It seems to pop up on quite a few blogs and facebook pages.  Anyway, hope you like it as much as I do ...


On the first day of Christmas, the good Lord gave to me: a child with special needs.

On the second day of Christmas, the good Lord gave to me: a heart full of love for my child with special needs.


On the third day of Christmas, the good Lord gave to me: an ache in my heart and a heart full of love for my child with special needs.

On the fourth day of Christmas, the good Lord gave to me: a tear in my eyes, an ache in my heart and a heart full of love for my child with special needs.


On the fifth day of Christmas, the good Lord gave to me: an unexpected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.


On the sixth day of Christmas, the good Lord gave to me: a ray of hope, an unexpected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.


On the seventh day of Christmas, the good Lord gave to me: a sense of humour, a ray of hope, an unexpected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.


On the eighth day of Christmas, the good Lord gave to me: supportive friends, a sense of humour, a ray of hope, an unexpected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.


On the ninth day of Christmas, the good Lord gave to me: remarkable doctors & therapists, supportive friends, a sense of humour, a ray of hope, an unexpected strength for the tear in my eyes and the ache in heart and my heart full of love for my child with a special needs.


On the tenth day of Christmas, the good Lord gave to me: an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humour  a ray of hope, an unexpected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.


On the eleventh day of Christmas, the good Lord gave to me: a sense of pride and courage, an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humour, a ray of hope, an unexpected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the twelfth day of Christmas, the good Lord said to me: Reach out and share your sense of pride and courage, your appreciation of small accomplishments, your remarkable doctors & therapists, your supportive friends, your sense of humour, your ray of hope, your unexpected strength for the tear in your eyes and the ache in your heart and your heart full of love for your child with special needs.

Saturday, 17 November 2012

Party time?


Little H went to his first party today.  I mean, he’s been to parties before of course, but this was the first time he had specifically been invited to a party, not just because I’m friends with the parents of the birthday girl, or because his brother has been invited.  This party was just for H.  He even had his own individual party invite.  I was very excited.  This party was the third birthday for one of his ‘friends’ at the sensory play group he goes to once a week with his carer.  They had invited all the other children from the group too.  I was looking forward to meeting the parents properly – most of whom I have only chatted to in passing, but more than that I was looking forward to a party where H would fit in.  It was at a Wacky Warehouse/soft play type area so although not entirely appropriate for H, I knew no-one would look at me oddly as I encouraged him to hold the balls, or lie down in the ball pool.  I knew that no-one would question why I was carrying such a large child around and why he wasn’t going down the slide or running round.  They had thoughtfully asked about food for H and had just ordered an ice cream for him.  There’s another tube-fed child in the group and I knew it wouldn’t seem odd when I pulled out his pump and giving set and hooked him up to a feed while most of the others munched on sausage and chips and that no-one would frown or looked puzzled as I allowed him to lick tiny bits of ice cream from his fingers.

And no-one looked twice as I fed him milk through a tube.  And no-one appeared to notice that he still wasn’t walking at two and a half.  No-one frowned or looked puzzled.  And no-one looked at us with pity.  But I had to fight hard to swallow the lump in my throat.  And I had to work to resist the urge just to leave.

I rang to enquire about a place at the sensory play group when H was just 7 months old.  Investigations into his delays had just begun and up until that point I had been taking him, when I felt mentally strong enough, to local stay-and-play groups where parents of children of similar ages compared how much their child slept/ate/crawled.  It was isolating and upsetting and at times I felt almost apologetic when I had to explain that H was exactly the same age as their child.  Often I got away with it, as he slept through most of the session, though that was odd in itself, but when he was awake the difference was so stark that it was hard to avoid the questions.  Perhaps if I had cried they’d have stopped asking, but my blasé attitude only encouraged more questions, leaving me emotionally exhausted by the time I got home where I could have a good cry in peace.  It wasn’t all bad, one of the staff members in particular was amazingly supportive; her son was born the same week as H; she found a local sensory room for me to go to, lent me toys and sensory items to use at home with H and even to this day, still contacts me to find out how he is doing.  Anyway, I digress... when I rang them at 7 months old, I genuinely said “I’m not sure he’ll be ‘bad’ enough to go to your group” but they assured me that they took all types of special needs, from children that ‘just’ had a speech and language delay, to children with autism, Downs and other more complex needs.  I took him along and felt a bittersweet sense of relief that he did fit in there.  It was nice to belong, but I hadn’t really wanted to be part of the ‘disabled’ group.  It took the blinkers from my eyes a bit to see him fit in there.

The group was amazing but sickness and seizures meant he was off as often as he was there, until his seizures became so bad it was no longer safe to travel that far with him.  They kept a place open for him and when we finally managed to control his seizures through the ketogenic diet and had organised a carer from complex care to go with him, he returned in June of this year, almost a year after he had left. 

Most of the familiar faces were there, the children he had started with and there were a few new faces, but one thing was obvious, they had progressed in leaps and bounds (relatively speaking) and left H trailing in their wake.  When H started he wasn’t the only one who couldn’t sit; now all but one of them could walk.  Today at the party, I was confronted again with that harsh reality, that even in the world of special needs, H is pretty severe.  And by pretty severe, I mean profoundly disabled. Profoundly.

As the other children sat on their chairs at the table, H was in his pushchair being tube fed.  Even the other tube fed child sat at the table.  I couldn’t even get his pushchair into the side-room so he could ‘sit’ with the other children because there wasn’t the room.  He couldn’t climb in and out of the ball pool, crawl along the mats, roll the balls, hold the balls even.  The other children smiled at their parents, signed hello, interacted in various ways with each other and the people around them.  Many of them, recognising H, came and ‘spoke’ to him, whether that be through words, sounds, signs or even just smiles and gestures showing recognition.   H sat oblivious to his surroundings, to them, to me.  He was happy sure, but he is always happy really.  Which of course I am incredibly thankful for. 

But today, as a group of children with various syndromes and disorders and delays and additional needs sat around the party table clapping as they signed, or mouthed along to happy birthday, H sat in his pushchair on the other side of the partition, staring up at the lights on the ceiling, oblivious as I stroked his hand and bit back the tears.

Friday, 14 September 2012

Labels labels everywhere

Low fat.
Keep shut.
Danger.
This way up.

Press here.
Give way.
50 kcals.
For sale.

New and improved.
Wide load.
Contains nuts.
Road closed.

Labels to inform and labels to warn.
Labels to entice and labels to advise.
Labels to categorise and group with the same,
Labels to classify and to explain.




Profoundly disabled.



Life limited.



Labels labels everywhere.

Thursday, 6 September 2012

Lunch time, tubie style


It is lunch time and I have just fed my son a small bowl of purée.  He has some in his hair, lots on his face and there are splatters across the floor.  He has his fingers in his mouth feeling the food, then smearing it across his clothes and chair.  He enjoys the taste and the sensation and is impatient for more.  He takes a teeny tiny sip of water from the cup that I am holding.  Most of it dribbles down his chin and I suspect more saliva went into the cup than water came out, but some – perhaps a droplet or two, he manages to swallow.  I am delighted, close to tears with pride.  His older brother claps and cheers.  H smiles and dribbles some more.

This is not just any lunch ... this is the lunch of a tube fed boy!


Little H hasn’t always been tube fed.  He developed pneumonia after he was born and was tube fed my expressed breast milk for a few days but after that he fed orally.  It wasn’t quite as it should have been; he struggled to latch on (despite numerous attempts from breast feeding counsellors), he couldn’t really manage the bottle that well either – I’d have to hook his tongue out of the way then wiggle the teat around until he closed his mouth, he didn’t give eye contact at all, he vomited regularly all the time, he never seemed hungry and would sleep for hours and hours on end without crying for food.  I’d have to strip him completely naked and get him really cold just to wake him enough to take the bottle; then he’d fall straight back to sleep.  But despite the difficulties he gained weight at a reasonable rate.  Reflux, dairy intolerance, allergic reactions made finding a suitable milk difficult (I gave up the soul destroying task of expressing pathetic amounts of milk, to feed in a bottle, for him to puke the whole lot back up), and weaning didn’t start until he was about 10 months due to recurrent infections and hospital admissions.  It was slow progress, but by around 14 months Little H was managing basic baby purees – Ella’s kitchen was a huge favourite – and I was topping up with a couple of bottles of milk.  Not age appropriate I know, but pretty good all the same.

All that changed last summer when his epilepsy became completely unmanageable.  Drugs have never managed to control H’s epilepsy but last summer the amount and severity of seizures reached terrifying levels.  He spent the majority of time in the High Dependency Unit and we began getting recognised by the ambulance crew.  It was a horrible time.  The Paediatrician and the Neurologist made the decision to put him on an incredibly high dose of intravenous phenobarbitone in an attempt to break through the seizures.  Ordinarily drugs are introduced slowly – while being weaned off one drug, the next is introduced gradually.  But time was of the essence and H’s little body was pumped full of this powerful sedative whilst still taking treatment doses of nitrazepam and keppra.  That’s a lot of drugs for a poorly little boy to take. 

The effects were devastating but the alternative was much worse.  H was completely unresponsive.  He couldn’t move.  He couldn’t even open his eyes.  It was heart breaking. 

But he was alive.

I’m not sure what robbed H of his ability to feed orally – was it the drugs, the seizures or a combination of both?  Either way, from that point on, H was fed through a tube.

I assumed that the nasogastric tube (NG) was temporary.  Well, they told me it was temporary.  But I think my idea of temporary and their idea of temporary were a bit at odds.  I thought weeks.  They didn’t. 

A year later H is still tube fed, though his NG has been replaced with a peg which is less conspicuous and much safer.  Initially the idea of tube feeding really upset me but I realise now how useful it has been.  Even when H has been ill (which has been often), I can continue to feed him and more importantly get fluids into him, which in turn enables him to get better more quickly.  It has also made putting him on the ketogenic diet much easier (a diet to try and control his seizures – read more here).


The diet has had such positive improvements in H’s levels of alertness (I promise to do a proper update soon) and an unusual run of good health mean I think it’s time to start weaning again.  We have tried before but illness usually sets us back.  It may well do again, but thankfully H does enjoy his food which makes trying to wean him that much easier.  The difficulty this time is trying to find things that fit in with the ketogenic diet.  For now, I am trying Ella’s kitchen mixed with double cream!!!  Since he is having such small amounts it is having no effect on his ketones, however if/when his appetite improves and he is managing more than tasters I will have to be more careful what I feed him.  Time for me to do a little research I think.  But any advice on weaning tube fed children who are on the ketogenic diet would be greatly appreciated.

Tuesday, 28 August 2012

Memories of a tactless doctor . . .


I’d like to start this post by saying that things are pretty good at the moment.  Little H is much healthier; the ketogenic diet has reduced the severity of his seizures so that although he is having seizures every day, he is able to breathe during them.  Considering the amount of times we have had to resuscitate him in the past, this is a significant improvement and makes life much easier – we are managing to do things as a family now, even managing a week’s holiday (in Wales, close to hospitals) rather than half the family being confined to the house for fear of what H would do when we were out.

Perhaps the very fact that things are easier has prompted my rather reflective mood lately.  Or maybe it’s simply that enough time has passed allowing me to process events more clearly.  Whatever the reason, I have found that I am recalling events from the past year and realising just how bad things were.  I suppose when in the midst of it, lurching from one disaster to the next, running on adrenaline and no sleep, there just isn’t the time to process any of the emotions involved, or to think about the reality of the situation or the likely outcomes. 

You just keep going. 
Somehow. 
Because you have to. 

This morning I remembered a doctor at our local hospital, who we named ‘Dr. Dick’.  His name was Richard and he was unbelievably tactless and insensitive at times, hence his nickname.  He told me that the choice of blanket I had on H’s bed wasn’t particularly helpful (it was blue) as he couldn’t find him when he’d stopped breathing.  Bearing in mind how quickly H would go blue during a seizure and how serious this was, I failed to find the funny side of that ‘joke’.

He also regularly made comparisons with his own daughter who was slightly younger than H.  Bearing in mind how ill and developmentally delayed H was it seemed entirely inappropriate.  “My daughter’s nearly that age and into everything, it’s such hard work” and “my daughter had chicken pox recently, it’s a nightmare isn’t it?” (H had ended up in HDU twice because of the seizures brought on by the chicken pox virus, I hardly think that compares to the few itchy scabs his daughter had).

Another time, after a particularly scary ambulance ride* to hospital, where H hadn’t responded to the Midazolam and had required rectal diazepam to try and stop his seizures, he commented how he hated to hear the sound of sirens coming towards the hospital as he knew something bad had happened.  Mr. M calmly managed to respond “imagine hearing them coming towards your house then and knowing it was for your baby”. 

*scary ambulance ride
You probably imagine that all ambulance rides are scary to some extent when it’s your child being whisked off to hospital, but when you’ve done it a few times you realise there’s more than one way to get to hospital in an ambulance.  There’s the calm and relatively relaxed way, where the paramedics come to the house and check the child over, they have time to sit and ask lots of questions and fill in forms and you have time to grab some stuff for the hospital bag, arrange child care for your eldest and ring your other half.  The journey itself goes at a reasonable speed and you end up in A&E where you wait with everyone else (I was quite surprised that there’s no queue jumping allowed for arriving by ambulance). 

And at the other end of the scale is the super scary ambulance ride, when you and your child are bundled into the back of an ambulance regardless of the state of undress of either of you, the ambulance starts to move as soon as you’re in, sirens on, lights flashing.  Monitors and oxygen are hooked up to your child while the paramedic in the back makes urgent phone calls through to the hospital with sats levels and heart rates.  Your child is whisked away on the trolley, while you’re still undoing your belt and taken to ‘resus’ not A&E.  Here you’re met by a team of about 15 Paediatric Drs and nurses.  That’s when you know it’s serious! 

Back to the story ...

So, Dr. Dick came to visit me one day last summer in HDU.  H had been in and out of hospital for weeks, staying for days at a time, coming home only to return again days later, more often than not by ambulance.  He was uncharacteristically sombre as he sat by the bed and apologised that there was nothing he could do to help.  We’d become quite familiar faces at the hospital; I think many of the nurses liked H.  He said that the nurses had been getting angry and upset that every week H was coming back and that they weren’t doing anything to make him better, nothing was stopping his seizures.  He apologised again and said he wished there was something more they could do and they were trying their best.

It occurred to me today that H must have been very very ill.  I don’t think I realised that at the time.

He asked if we’d eaten and said he’d get the nurses to order us a pizza.  Maybe he wasn’t that bad after all.  

Friday, 17 August 2012

The 'H' Word

Hospice:

Acorn's Children's Hospice
Established in 1988, Acorns Children's Hospice Trust is a registered charity offering a network of care for life limited and life threatened children and young people, and their families, across the heart of England. These children and young people are not expected to reach adulthood and require specialist care 24 hours a day, 7 days a week. Acorns is currently supporting over 630 children and more than 880 families, including those who are bereaved.

I left Little H on his own there today for the first time...


Four hours in total I will be away. 

He will have time in the hydro pool and the sensory room. His nurse is lovely. She has had him before and I know she will look after him. I feel quite proud of myself for leaving him.  I know it is in his best interests - he needs to get used to spending time with other people and the time in the pool and sensory room will be fun. It is good for me - I need to learn to trust that others can take care of him and give myself a bit of 'me' time. I know it is a 'good thing'. 

I have left him for a few hours recently too; with his complex carers at a sensory play group. So really this is no big deal. It really shouldn't be. There are nurses there. They deal with far more complex children than H. Much sicker ones too...


I left him easily enough. Managed to wander round some local shops and grab a coffee and a muffin. But then it hit me. And tears stung my eyes. And a hard lump formed in my throat. And my hands shook.  And my stomach squirmed and churned so much I had to concentrate on not being sick. 

Spending time away from Little H isn't the problem. Leaving him in the capable hands of a team of nurses isn't what's upsetting.  Its not the leaving him itself that is difficult.


I have just realised I have left my son at a hospice.

A Hospice.      And all that implies.

My son.

And it is breaking my heart.

Wednesday, 8 August 2012

Do they know those days are golden?


I've listened to Elbow’s ‘lippy kids’ a lot lately and it fills me with a sense of melancholy. If you've not heard it (and you should - click the link below) it’s about a man reflecting on the carefree days of youth as he watches the kids hanging around a street corner. 

“Do they know those days are golden?” he asks.

And they don't do they? We don't realise how quick the time flies, how suddenly things can change. How precious and sacred the naive innocence of youth. 

“Build a rocket boys” he urges.

Make the most of now. Grab life with both hands. For in this moment, in this moment of innocence you can achieve anything. The whole world is yours for the taking.


I am sat in town watching a group of teenagers playing table tennis on one of the many tables that have sprung up around the city, inviting passersby to stop and play for free as part of a nationwide ‘Ping’ event.  I am filled with that familiar sense of melancholy. I want to shake them and tell them to make the most of these precious care free days; to bank these memories, to remember these feelings, to appreciate how simple and uncomplicated life can be. I feel like I have been robbed of my innocence somehow, that my eyes have been opened to a cruel world that I never realised existed before. I feel real pain at that loss. I long for the days when things were simple, when my child growing up and going to school were just things I took for granted. I wish my eyes hadn't been opened and my heart scalded by the fear that one day I will lose him.


And yet conversely, these days are golden.  

I have hours and hours of video footage and photos and banked memories to remind me of these precious precious days. It remains unspoken but there in the back of my mind is the thought that one day, these memories, these photos will be all I have. No doubt then, I will want to come back in time and shake myself, remind myself how precious these days are.


Do you know these days are golden?



Friday, 29 June 2012

A special needs parent is . . .


You wouldn't like me when I'm ANGRY!!!
If you are reading this hoping for assurances that it was all part of God's plan, that He chose you because you're selfless and strong and special, then you are in the wrong place.  Or if you wanted a list of how multi-skilled and multi-talented you are, how you're a nurse, doctor, pharmacist, physiotherapist, occupational therapist and teacher all rolled in to one, then you wont find that here.  If you thought this was going to be a life affirming description of how much better you are than the 'other' parents and their 'typical' kids then you'll be disappointed.  And you clearly don't know me very well! But if you head over to Facebook or scour the Internet, you'll find a multitude of stories, poems and platitudes that'll make you feel better.  You see, it has long since been apparent to me that actually the one characteristic that the majority of special needs parents share isn't compassion or selflessness, kindness or courage, it's anger! Special needs parents are ANGRY!

Just keep calm and smile . . .
In a former life, before the arrival of Little H, I came in to contact with a lot of special needs parents.  Call it fate, call it part of 'The Plan'; training for the life I lead now, call it coincidence or good fortune (perhaps misfortunate might be more appropriate some days) but I learnt a lot of lessons and a lot of skills in those years that have helped me cope with the trials and tribulations Little H, and the army of professionals we come into contact with, throw my way. One major lesson I took away was, to paraphrase a now rather irritatingly overused slogan, 'keep calm and smile'. Be nice. And don't get angry. Don't get angry. Don't get angry. Did you hear me? I said DON'T GET ANGRY!!!

Parents who were home schooling their children because they had been so let down by the education system, parents fighting the Local Education Authority to place their child in a school that might at least attempt to meet their child's needs rather than dumping him in the local mainstream, parents fighting teachers who had neither the time, the resources (or sometimes the inclination) to differentiate the class work yet further so that their child could access the curriculum; I have met them all.  I have seen mothers cry in anger because their child has been discriminated against, fathers crying in frustration because medical incompetence has put their child's life in danger, parents physically shaking at some injustice or other.  I have heard some horrendous stories of children and families being let down repeatedly by the education authority, the health authority and social services.  I have been shocked, surprised and annoyed on their behalf.  But often, part of me thought, if you'd just smiled more and asked nicely then perhaps things wouldn't have got so bad. Maybe you went about it the wrong way. All this shouting and shaking and getting angry isn't going to make people want to help. And I vowed never to be THAT parent, the angry, shouty, shaky one, the one whose voice you can hear buckling under the pressure of trying not to cry.  After all, I was at an advantage- I could see it from the teacher's perspective (having been a teacher) as well as the parent's perspective.  I would be the epitome of niceness and calm!

Happy, happy, joy, joy ...
And Little H came along and life was slightly more complicated than it had been with Cheeky.  But I learnt the names of all the receptionists and I started telephone conversations with 'I'm sorry to trouble you' and 'I wonder if you could help' and I said please and I said thank you and I thanked people for their time, their patience, for going to such trouble.  And it worked. Receptionists squeezed us in for last minute appointments, chased up test results, rang us with cancellations. Being nice worked! I patted myself on the back for being so cunning!

Then H became more complicated (or complex as the doctors LOVE to say) and we needed more appointments and started seeing more and more and more professionals. I snapped and swore at a receptionist who had the audacity to ask if I was sure it was an emergency, while H screamed in the background for the 16th hour in a row, Cheeky sat crying for his lunch and I couldn't remember the last time I'd slept for more than an hour at a time without having to get up to catch projectile vomit, or sit in a steam filled bathroom to ease his breathing or just walk backwards and forwards, listening to endless crying but being able to do nothing to help.  The swearing wasn't my finest moment. It got me an appointment mind you but I did go and shame-facedly apologise to the receptionist.  I had a word with myself after that. I repeated the 'keep calm and be nice' mantra to myself, but I realised it wasn't as easy to stay calm and smile when you've barely slept and spent so much of your time listening to screaming and crying that you'd eventually reached the 'if you can't beat them, join them' point and collapsed in a corner sobbing and rocking.  Yeah, not quite so easy to stay calm and smile then!


Time went on and the list of professionals grew. At last count there's 23.  That's not an exaggeration, I can list them if you want (paediatrician, neurologist, dietician, community nurse, opthalmologist. . .)  And Little H needed more services and equipment (specialist buggy, standing frame, supportive seating system, lycra suit, piedro boots. . . ). That's a lot of phone calls, appointments, letters. That's a lot of professionals, receptionists and opportunities for things to go wrong, or get lost, or get forgotten about, or get sent to the wrong person. That's a lot of 'I wonder if you could help' and 'thank you for your time' through smiling, gritted teeth. 

I try very very hard to remain positive and happy and calm, to remember that H isn't their only patient/ client/ service user/ whatever the politically correct term is these days. There are times though when phone call after phone call and email after email just don't seem to get the job done. Times when the service you receive (if at all) is so far below your expectations that it beggars belief. Times when Little H and I have been so let down that I can feel myself shaking with anger. Times when Little H's health has been put at risk and I could cry in frustration. These are the times when I have to take to the computer and write a 'Letter Of Complaint'. 

Getting a bit of a name for myself!
Yesterday as I finished my most recent letter of complaint (with gems such as 'it is unfathomable to me how after 9 months this issue has not been resolved' and 'It should not take this much effort on my part to organise a simple care package for my son.') and was imaginatively saving it as 'complaint to . . .', when up popped a list of recently written complaint letters. I appear to have become a serial letter-of-complaint writer.  To be fair, I don’t just sit around moaning, waiting for the next thing to complain about – it’s only for the really serious issues that I have made an official complaint, mostly for when some oversight or neglect has put H’s health in danger.  One letter resulted in a complete review of a service and an overhaul in the way it was provided, another ensured rules and regulations that were appropriate for most were adapted for H and who knows what yesterday’s letter will achieve – the head of service is coming to visit us next week to discuss the issues I raised.  It is frustrating though that it takes angry complaint letters to get things done.  I am busy enough with appointments and phone calls and therapies without having to complain to get a basic, acceptable service. 

Little H has just turned two.  So far I have submitted four official complaints about the care he/we have received.  Luckily, I have been able to channel that anger constructively into a good letter of complaint, but each time leaves me exhausted and causes anxiety about the knock-on effects complaining may have on his care and the perception people will have of me.  It is both mentally and emotionally draining.  I feel compelled to write though, partly to feel that I am doing something useful with all that pent up emotion, but also because if someone doesn’t complain, nothing will get changed and at least I am in the fortunate position to be able to raise these concerns in a (relatively) coherent manner.  What about those parents who have difficulties with literacy, who lack confidence or perhaps have learning difficulties themselves or English as a second language?  What happens to them when their care is substandard?  Who advocates for them?

Yesterday, as I challenged the person responsible for the mix up that meant H could still not be left with his carer for a few hours after nine months of organising and planning, I felt myself start to shake.  I tried to keep my voice on an even keel but I could feel it breaking as I explained that their failure to resolve this issue had resulted in H’s older brother Cheeky not being able to go to the soft play area as promised.  Instead, with me, he had to stay and babysit his brother and two carers.  Mix ups and forgotten letters and broken promises and mistakes don’t just affect me – that I could handle perhaps, but they affect Little H and they affect Cheeky.  The whole family suffers as a result.  And that’s not fair.  As I explained this, as calmly as I could, I felt my legs shaking and a burning lump in my throat at the injustice of it all.  And I realised then, that I am becoming THAT parent.  That shaky, shouty, angry parent.  This is what the NHS has turned me into, in just two years. 

And I haven’t even started with the Education system yet.  God help us all!


***********

Amazingly, there's someone else out there with as warped a sense of humour as me and has voted this post for the 'funniest post' category in the #SWANs!

If you'd also like to nominate this post, you can do so by following this link:

The SWANs Blog Post Awards


Or if you'd like to find out more about the SWANs visit the SWAN UK website: www.undiagnosed.org.uk 



Friday, 22 June 2012

Resuscitation Status


I apologise in advance for the overly ‘ranty’ nature of this post, but I really feel the need to get this off my chest.  It irritates me immensely and in fact I find it inherently offensive that, once again, I have been asked about Little H’s resuscitation status.  For those not familiar with the term, it basically means “If your son stops breathing, would you like us to help him out or shall we just leave him to it and wait for him to die?”

Pretty offensive right?

Now, I can understand why such things do need to be discussed.  Imagine a terminally ill patient at the end stages of cancer, for example.  But I struggle to see how this is relevant to Little H.  He is a happy, smiley, mostly-healthy little boy.  But on at least four occasions I have had to justify his right to live.  I am 33 (for at least another week anyway) and my resuscitation status has never been called in to question.  If I collapsed in Tesco, it is a given that the emergency services would do their utmost to save me.  Why is the same consideration not given to my son?

 Is it because at nearly two and a half, developmentally he is still like a new born baby?  Is it because he regularly stops breathing during seizures and needs to be resuscitated?  Is it because his condition is life limiting as well as life threatening and that he is not expected to reach adulthood?  I’m not sure.  Probably a combination of the last two I expect.  I sincerely hope that simply being developmentally delayed isn’t significant enough reason to question his right to life – this isn’t Nazi Germany after all.

I referred in a previous post to a Doctor, who didn’t know Little H, who gave us a whole “Quality versus Quantity” of life talk, which basically implied that H had no real quality of life.  He has been ill at times, very very ill, but at no point have I felt that his long term quality of life is impaired.  My quality of life deteriorates when I am ill; I once spent a week in bed with tonsillitis – should I have been put forward as a ‘Do Not Resuscitate’? 

With my sensible head on, I can see that Little H rings a few alarm bells.  I can see that everyone involved in his care needs to have a clear plan.  I can understand that since he has ‘palliative’ care and attends a hospice, discussions such as this are inevitable.  And, although it breaks my heart, I realise too, that there may come a time in the future when this discussion is appropriate, when his quality of life might be such that invasive medical interventions would only add additional pain and suffering for very little gain; that ‘full resuscitation’ might not be in his best interests.

But that time is not now. 

Look at him.  Look at that smile.



“Do I want him resuscitated?”

How can you ask that question?  

Thursday, 14 June 2012

A father's day tribute

I am looking at a photo of my dad. It was taken back in 1990, during Italia '90. I'm not a football fan, but that was a big year for Ireland and Jackie's army. 


 "we're all part of Jackie's army, we're all off to Italy, and we'll really shake them up, when we win the world cup, cos Ireland are the greatest football team! Ole, ole, ole . . ."  
Maybe you had to be there. 


Me and dad went to Ireland on our own, leaving my mum and 3 brothers behind. It was for a christening or something. We took the coach all the way there.  (well, a ferry too, obviously).  I remember shopping for football related souvenirs for my brothers. I'd have been 11, nearly 12 then. My dad looks so happy in the picture. 


He has his hands up in the air and this huge grin on his face. He always took a good picture.  I think it was the little twinkle in his blue eyes that did it; a hint of mischief. 


 My dad died 3 years ago, a month to the day after Cheeky was born.  The last time he left the house was to meet his first grand child just hours after he was born.  It must have taken every last ounce of strength to walk from the car, but he did it. The nurses broke the rules and even allowed him on to the labour ward. He was the first person after Mr. M and I to hold Cheeky.  I will be forever grateful for that moment and I truly believe my dad held on so that he could meet his grandson, his namesake, before he died. 


 I wrote a poem for his funeral and read it out as a tribute to him.  This is it: 


 My dad 


 My dad's eyes are the bluest blue, 
Like stars they twinkle and shine. 
There's that hint of mischief in his look, 
And a twinkle all of the time. 


 Laughter lines crinkle around his eyes, 
Caressing his jolly face. 
Merriment dances on his lips. 
Dad's smile -a warm embrace. 


 He's only little, is my dad, 
But he has a big, kind heart. 
His warmth and generosity, 
Really sets him apart. 


 Nothing's ever too much trouble, 
He'll do anything for you. 
He always takes time to give others a hand, 
Dad's generous through and through. 


 I don't think there's anything my dad can't do, 
Never taught- he just seems to know. 
Building, fixing, plastering, painting . . . 
You name it, he'll give it a go. 


 My dad's a really keen worker, 
The keenest worker I've known. 
But he's also devoted to mum and us kids; 
No matter where he works, he always comes home. 


 My dad likes a drink with his buddies, 
A pint in the pub with the lads. 
Then his eyes twinkle all the more brightly, 
No matter how many he's had. 


 But dad's also quiet and gentle, 
A big softy on the inside. 
He'll talk away to the cats, 
And he cries at 'Surprise Surprise'. 


 My dad's not suffering any more. 
He's no longer in any pain. 
And although we'll miss him terribly, 
I know we'll see him again. 


 My dad never moaned or complained, 
No matter how tired or ill, 
He was always joking and smiling. 
I'm sure he's doing that still. 


Right now he's with our sister, 
Together in heaven they'll be. 
Dad's busy building or fixing things, 
And driving round in his JCB. 




 Happy father's day dad. Xxx