Tuesday, 15 April 2014

The Writing Retreat

I have alluded to the idea, on more than one occasion, that now my youngest is headed for the big world of school in September and as the decision has been made that no more little J's are going to be coming into our life, I have reached the point where I can start to think about what I might like to 'do' - now I am not going to be spending 15 hours a day trying to keep the little ones alive (this will reduce to a mere 8 or 9... except in school holidays of course).
The idea is to write.  In a fanciful and childish way I claim 'When I grow up I want to be an author.' But unlike the wonderful ignorance you are allowed as a child I am now fully aware that this is no easy task.  It requires ideas and creativity (plenty of it), it requires time (plenty of it), it requires confidence (plenty of it), it requires discipline (plenty of it), it requires, like most things, some degree of luck (plenty of it).
But, I am willing to give it a try, because now is the time.  As my 35th birthday looms ever closer I have actually felt, for once, older.  I have never really worried about birthdays before.  My best friend is the opposite, as his birthday approaches he elopes off to 'Maudling Land' and the word 'Birthday' is not even to be whispered in his direction.  We buy cards with 21 on them. 
I suppose it has helped that I always looked younger than my years, obviously between the ages of 17 and 25 this was a factor I hated.  Having to carry ID everywhere and argue at the door of clubs that yes, it was genuine ID.  But after reaching my mid-20's I have enjoyed the fact that everyone thinks I am much younger than my husband (and although he baulks because in actual fact there is only two years between us I think he quite enjoys it too).
But, all of a sudden I am going to be 35.  It has a much bigger feeling that turning 25 or even 30 did.  I am not sure why it has started to bother me.  Maybe it is because, although I have been vaguely aware of years passing more quickly as I have aged, all of a sudden I am acutely aware they are passing in a flash.  That I have cousins, who to me were eternally my 'older cousins' in their 30's who are now turning 50 and it is I who is mid-30's.
My 'Well, I can't do it yet because of x, y and z.' factors are almost gone and I am left instead with, 'You need to do it now because you aren't getting any younger.' ringing in my ears.  With this, somewhat disconcerting, state of affairs I have started to put in the discipline.  My 'child is at nursery' allocation of hours are being prioritised for writing where possible but sometimes it is difficult to not let the house chores take over.
So, I put my business head on and decided to book myself out for writing.  Like, booking a meeting you know you can't miss or think about anything else whilst there.  I signed up for the Urban Writing Retreat one day course in London.  This is literally a day to write.  Take yourself out of your normal environment and concentrate.  And concentrate we did, it was lovely to see a dozen people all their to get their head down.  The idea may seem strange, why go to a venue with other people who you are literally there to ignore.  But it works.  With food and drink provided (including delicious home made cake), plus helpful writing prompts if you find yourself struggling for any reason to get creative, it was amazing how a change of environment and a common (unspoken) understanding of 'writing is hard work' can give you some drive. 
Sometimes sitting at the computer getting words down on paper can be lonely and quite frankly others seem to make the assumption it is a little frivolous which can knock your confidence.  But for those writing their first draft (or second, or third, or fourth) and beginning to understand just what it takes to get a finished product, sometimes it nice to be surrounded by others (even if just to ignore) that understand what you are going through and to know, in actual fact they are sitting there going through exactly the same thing.
I would guess a writing retreat may not work for everybody, but for me it did, I got just shy of 5000 words penned that day and the biggest sense of achievement.  I left knowing I had done a massive amount of felt quite content, rather than trying to snatch an hour or two here or there and scraping perhaps a few hundred words and feeling like I wanted to achieve more.  So I am glad I paid and took myself away to self indulgently think of nothing but writing.  It has put me in a much better mood in general which is beneficial to the kids and husband as well.  I have been able to feel I have started to gain a sense of self identity back which can be easily forgotten in the everyday hustle bustle of being a mum. 
My top tips for attending a writing retreat would be :
1. Make sure you know how to turn the sound off of your lap top (as mine made every noise possible I was so glad to have older mum in a muddle next to me to click the button to silence the 'never seemed that loud before' computer).
2. Make sure all 'updates' have been performed the night before (15 minutes into writing mine decided to restart itself and update - of course).
3. Don't be on a diet - you need cake.
4. Be prepared for sore eyes and laptop arm the following day.
Otherwise enjoy! 

Monday, 7 April 2014

The Disability Diaries : The Tsunami of Emotion

Yesterday was one of those days I hate.  A day where fear catches up with me and washes over my mind like a powerful tsunami. 

There is no out running it.

There is no swimming away from it.

There is no rescue helicopter coming for me.

It was one of those days I have to submit to, in the hope that if I let it ravage me, then like a dog with a rag doll, when it is bored it will toss me aside and if I am lucky I have the strength to pick myself and crawl to safety. 

The safety of another day.

I thought it would help if I wrote down all the things that scare me.  All the things that must be seeping out of me, like blood, to attract the shark.  To try and dispel of them.  Or just to get them back into Pandora's Box so I can get along perfectly well for, well, however long the lock will hold.

What was it that set me off?  What rumble at my core set the trigger for that tidal wave?

It was something as simple as changing J1's socks.  I noticed that his right ankle looked quite misshapen.  I looked again, and yes, the ankle bone is sitting next to a lump.  And the foot was very hard, almost solid.  I remembered sitting rubbing an ankle and foot like that before.  My nan's.  When she got very poorly and could no longer get mobile.  Whether it be water retention or whatever, I am not sure, I rubbed and rubbed and that is when I got caught.

The thought of operations entered my head.  Will he need operations on his ankles and feet, for the same reasons as he has had to have the horrendous operations on his hip - if they are not used and do not weight-bear they start to grow out of form?  The words 'operation' and 'surgery' start to scream in my ears. 

Moving on, my mind moves up his legs and hips, already resembling a patchwork quilt of crass needle and thread marks.  I wonder if that wince when I was changing his pad earlier in the day is frequent enough to worry that, yes, he has had rapid growth spurts and, yes, he will need the same surgery again? 

Operation.  Surgery. 

His spine, I try to gage as he attempts to sit holding his head, only partially winning, is it curving more now than four months ago?

Operation. Surgery.  Spine.

I am struggling to breathe mentally, as the fear starts to take over and win.  Mind in overdrive.  School keep asking me about his history with epilepsy.  It hasn't been something I have had to think about much of late, we were lucky and the epileptic activity that J1 once demonstrated seemed to vanish, but they are not so sure that he hasn't been having some absences at school. 

When they told me I was calm, I believe they are over-reacting, but now, I study him every pause, every quiet moment, is it an absence?  One of the things I have counted as a blessing, that he does not suffer with epilepsy, is it coming for us? 

Operation.  Surgery.  Spine.  Epilepsy. 

Now I am struggling to breathe physically.  I need some oxygen.

I went snorkelling once but I spent most of the session attempting to put my head in the water and panicking, coming up and thrashing for air.  Stay calm, the leader signalled.  Take it slow, just breath in and out through your mouth.  It took all my control and discipline and the mantra 'Just breath through your mouth.  Just breath through your mouth.' to be able to concentrate enough on doing so.
Just breath through your mouth.  That is what I am silently repeating to myself now.  Then a little voice breaks into my thoughts.  The voice of J1.

'What time is The Chase on?' he asks.  A life-raft breaking through the rough white foam of the wave.  My link to reality.  What is the reality?  Yes, all those questions are there, waiting to be answered.  But day to day life goes on and he needs me there, not floating desolate in a deep vast sea that I can not control. 

So, I do what I do best, and care for J1 so that we don't have to answer those questions yet.  We do everything we can to keep them as far away from him as possible.  He must never see that tidal wave of fear.  I am his sphere in which he sits, oblivious, dry and content, like a child playing in one of those hamster balls on a swimming pool.

And I acknowledge, just occasionally I must get wet and then merely dry myself off.


Friday, 4 April 2014

My Reasons to be Cheerful #R2BC

Well, it has been some time since I have linked up with My Reasons to be Cheerful, but I am looking forward to doing so.  I love that no matter how bad your week may seem, there is a reason to sit down and pick out what good has happened.  No matter how small.
This month (jolly old April) it is being hosted by Ojo's World, so please link up and check out the other uplifting posts.  If you are having a bad day, it might be just what you need to encourage you to find the positive.
So, without further ado;
What has made me cheerful this week?
* My mum came to stay.  Since the relocation it has been a big adjustment, not having my parents just around the corner.  Mum and I would pretty much see each other, at some point, every day.  So now we are two hours away we have to arrange 'stay-overs' and this week was one of them.  It is lovely to have her company for a couple of days.  I take her to lunch and she clears my ironing basket.  I get extra help with the children, always much appreciated.  And I get to be reminded that I am very lucky to, not only have my mum but to have such a wonderful friendship with her.
* Dancing on Ice - The Live Show.  One of the reasons for my mums visit this time was because I had tickets to see our favourite TV Show at Wembley Arena.  As soon as I heard that Dancing on Ice was going into it final ever series I booked tickets and we had good seats.  We had a wonderful evening, the show was absolutely fantastic and I am so glad I got to see my much loved idols Torvill and Dean perform for one last time.  It almost made me want to take up Ice-Skating again.  I said almost.
* I got 1300 words on my WiP written.  I wasn't sure I was going to get any done at the beginning of the week so I was very pleased with this.
* I caught up with some of my favourite blogs.  It has been a while since I have been in the blogging loop and it felt nice 'catching up' with the wonderful worlds of some of the lovely writers out there.
* We finally made some progress with one of the professionals I have been trying to get on board for J1.  Just one more phone call will mean that yes, we have got to the right place.  This makes me hopeful and more determined that I will track down the others. 
* I started reading The Great Gatsby again.  I just love this story.
So onto another week we go.  Let's hope I have as much to be cheerful about next time!

Thursday, 3 April 2014

Four - That Grand Old Age

Once again, I was astounded that another whole year had passed since I was attempting to find cards with SON and the appropriate age on.  J2 and I had made it through another 365 days, to the grand old age of four.
In 2013 when the impending age of three loomed I looked forward to it with the na├»ve hopefulness that, like in that legendary episode of Harry Enfield when Kevin turns from boy to teenager - but with the reverse effect - my tantrum throwing, stubborn little red head would turn into a polite, mindful little boy.
'When they get to three, they get easier.' I had heard almost everyone say. 
Hopeful.  Ever hopeful.
As you may have guessed this, of course, did not happen.  In fact I would dare to say that for the first six months of being three, he actually got worse.  However, things seemed to calm back down to a more manageable level for the latter six months.
At the ripe old age of four, J2 knows everything.  And is so unbelievably verbose he has no qualms in telling me, and most other people this in a four year old fashion.  He also has already established, to frustrating perfection, that amazing male art of 'selective hearing'.
Now don't get me wrong.  We have good days.  Those wonderful times when you can dare to think to yourself 'Houston I think we have turned a corner.' but more often than not, days are filled with drawn battle lines.  In a way this is fun.  I like to see my boy argue his case and try to negotiate his way out of trouble or into doing whatever he wants.  I think this could serve him as a good trait in the future if he hones it properly.  However, I do not appreciate it when we are in the middle of the supermarket and he is testing this skill out.
Most people take to J2 well.  He is a 'cheeky chappy' and of course I can see how that little grin and quirky comment will make you laugh and love him.  It makes me laugh and love him.  But when you see me snap 'Will you please - just do as I ask!', please remember I have been dealing with that 'cheeky chappy' and his disinterest in doing anything I ask him too, all day.
This is not a complaining post, I thought I had written about J1 a lot of late and it was high time I put a little something on here for my little J2 because he is such a character.  Yes he is very hard work to entertain as he doesn't have the greatest attention span, but it is a pleasure to be able to do just the 'normal' stuff such as scooting and going to the park or to the cinema.  When he behaves of course.
To get a day where he does and we get our chores done (hands up, he is a fantastic helper) and then we can take a trip and randomly chose an activity is, priceless.  When I watch him hop onto J1's bed with a tissue to wipe his dribble, or correct his glasses or just give him a cuddle makes me swell with pride.  To hear the two of them trying to have a little conversation - there is nothing sweeter to my ears.
So, as four approached I didn't imagine a big overnight change.  Good job, I didn't get one.  But I also realised that four really is a big number.  School applications have been submitted and results are eagerly awaited.  Number and letter learning books are being featured for 15 minutes a day in an attempt to get him to try and focus for more than 30 seconds.  Bikes have been mastered (with stabilisers of course) and artwork by the bucket load arrives from nursery.
Do I long for the baby years again?  In all honesty no.  But do I think time is going a little too fast?  Maybe.  Unless we are having a really stubborn day, then school I think will be the best place for him to learn some discipline that I am struggling to get through to him.
He is a character, our youngest boy, who is very into Mr Men and the only way to sum him up :
Mr Unique.

Tuesday, 1 April 2014

The Disability Diaries : Admitting Defeat?

They say that asking for help is the hardest thing to do.  Is it?  I don't think so, in respect of disability I sometimes feel that actually getting the help is sticking point.  It appears, that time after time, you can ask for help but unless you have the staying power of an ultra-marathon runner, the skin thickness of a rhinoceros and the forcefulness of a stealth bomber, you are screwed.
We are a family that has always tried to cope 'in house'.  We have asked for nothing in respect of respite in the 10 years that our son has needed our constant care due to his severity of his physical disabilities courtesy of his condition of Cerebral Palsy.
Our mind-set has always been, he is our son and to care for him is our responsibility.  As a mother it is hard to believe that anyone other than those closet to him could ever care for him with enough respect and empathy and thus it has been almost impossible to let go.  However, we had to let him start school.  And with this came the realisation that there are people out there who can care for him that he enjoys the company of as well.  And by being so over-zealous with the apron strings, maybe we are letting him miss out on other things.  Others company.  Social aspects.  Broadening his own ability to trust.
Understanding this is one thing.  Actually loosening those apron strings, well that is quite another.  But you know you have to do it.  You have to do it with all children eventually, but when your child doesn't quite have the capacity to understand if someone is being mean, or mistreating them and you are not sure if they would be able to tell you it is much harder. 
It also forces you to think about the thing that you never want to think about.  What if you wasn't here.  So more often than not, you retreat, back to how you were keeping all care 'in-house'.  With just those that you trust implicitly.
But what happens when your son becomes your height and body weight.  When he slips down his specialist bed and you can't get him back up, or if you try you risk damaging your back, neck, shoulders?  
Injury.  A carer's biggest fear for themselves.  Not for the fact of the pain or discomfort, but what it will stop you being able to do.  Caring for your child.  You need to be fit and healthy for as long as possible so that at the very least you can still be the ears and eyes for your child.  So sometimes there comes a point where it isn't your choice anymore.  You have to ask for help.
But when you make that call to whichever service you think you need, you are just another voice on the end of the phone, asking for help from a system that can't really afford to help everyone.  You are starting at the beginning of a very long, bureaucratic road that is a bit like a game of snakes and ladders.  Get the right person on the phone and you can leap frog to the next level.  The wrong one and down you go, back to the start.
We once asked for help in respect of developing J1's social skills.  For him to understand that you can go and have fun like bowling, or to a club like scouts with a friend rather than an immediate family member, to try and broaden his horizons.  It was a big step, deciding to ask for that help.  To cope with the idea that someone else would be his carer while he was out in the big wide world - even just for an hour or two.  But, I acknowledged, it would be good for him.  It took nearly two years to get refused.  Because - we were coping as a family.  They made murmurs about standard 'send him away' respite.  But that was not what we were asking for.  We were asking for much less.  But never mind that.
This time I asked if we could look at getting some help overnight.  J1 requires someone to be in the room with him at all times.  Therefore either myself or my husband has to sleep in the room with him.  He is with us full time now, my parents can no longer offer to look after him for nights in the week, and although we do it without thinking, will this have a detrimental effect on our relationship long term?  People repeatedly tell me that you can have an overnight carer come into the home specifically to sit with a child overnight.  They normally say this with an amazed tone that we do not already have this in place.  Like it is our fault.  But I ask them -  CAN YOU?  Really? 
We do not seem to be able to make this clear to anyone I have spoken on the phone.  When, of course, you eventually work out that you are speaking to the right department.  This time, I was directed to a booklet of available help - guess what that booklet offered - help a few hours a week to help with social activities such as bowling or scouts.  
Frustrated much.  I think so.
So, another week has passed.  I have done what they asked me to do.  Look at a booklet that whoever was on the phone should have known would not be able to offer a service that I need for my son.  Another week gone. 
Why am I starting to worry about this now?  I was never a worrier because as far as I was concerned I would always be the one to look after my child.  Ah the innocence of my twenties.  That wonderful age where you do not believe you will ever really feel older.  But as I rapidly approach my mid-30's and I can feel that back twinge or that shoulder blade pull, and I do realise that my parents are now pensioners and J1 is a big lad, the realisation can no longer be avoided.
We need help.  It just grates me to admit it.