Tuesday, 4 November 2014

Eleven

As I took down the last of the Halloween decor, indulged in purely for the delight of J2 and his friends, I mentally ticked that event off of the 'to-do' list.  Next my mind moved to the next big event for our house - hold.  A birthday.  The day it falls is, 6 November, but for me, it starts on the evening of 2 November 2003.
 
Eleven years ago, strangely enough on a Sunday night as it fell this year, my waters unexpectedly broke.  One minute I was watching Dogma and the next I was on the phone to the hospital asking what I should do in the event my water leakage should occur eight weeks early.
 
The response was to not go to them, but to go to the bigger hospital in the next town.  As it turns out they couldn't deal with me either and we got whisked off to a hospital over an hour away.  After monitoring, steroid injections and vast amounts of prodding and poking, I was admitted.
 
My first baby.  Ignorance was bliss.  I learned that quickly; the first steroid injection in the thigh you let them do, the second one you are more reluctant about.  When they go to give you a third you run screaming telling them you really have had the second one already!  Maybe I should have had more sense and kept a record of everything from that point.  But there are a lot of 'What If's' I could spend a whole lifetime debating so I have learned to just accept; I didn't.
 
Any reader of this blog will know the resulting consequences of my birth story.  My eldest son has quadripelgic Cerebral Palsy.  The brain damage he suffered, according the the MRI, happened in the last hour of the birth.  Apparently it is no ones fault.
 
Bad Luck.
 
That is the professional opinion.
 
So, for eleven years we have watched my boy live with this condition.  We have learned to support him and care for him to the very best of our ability.  We have watched him suffer as he recovered from operations needed as a consequence of not being able to walk.  We have watched him grow frustrated as he discovers he can not do a lot of things that his siblings can.  We have, I particularly, felt inadequate as a parent as I fail to get councils / governing bodies / professionals to listen.
 
It is easy to feel overwhelming negative. 
 
Until I have a conversation with him.  Yes, have a conversation with him.  I can hold a conversation with my little boy.  That was something I didn't know I would ever be able to do.  He didn't speak until he was five.  Now he talks, and shouts and sings, beautifully out of tune (a trait he most certainly gets from his mother!)
 
He tells me it is his birthday on Thursday.  He is going to be eleven.  He would like an Ipad.  He thinks he is going to get one.  He has got a flake cake to take into class.  He then tells me the name of his class; who his teacher is and who his best friend at school is.
 
I marvel. 
 
He is a miracle.  Saved in an age of technology.  Afflicted by bad luck but sticking his two fingers up to it's consequences. 
 
He has a lot of issues to contend with, in truth we all do.  Disability makes life extra hard work for everyone involved but he does it with a smile - well for the most part - we are gradually seeing more 'teenager' starting to creep in (but how great is that!).
 
So another year has crept by, I write this blog as I write one every year celebrating his growth and tenacity.  Celebrating the fact he is here, with us, to smile, laugh and give us attitude.  I thank my body for holding him in until just eight weeks before he was due to be born.  I thank the nurse who stuck a steroid injection in my thigh and backside.  I thank my son for being a stubborn and determined little man every single day.
 
Eleven whole years of being the luckiest mum ever.
 
Birthday Time.

Thursday, 9 October 2014

Wowzer

Where does the time go?  Seriously.  I have just noticed it has been almost three months since I last gave the blog any attention.
 
Dear blog. 
 
Sorry.
 
Regards, Lynsey The Mother Duck.
 
The last three, beautiful, summer months have been fun, fast and furious.  The school six week break flew past.  Our Mexican holiday was enjoyed and too soon became a wistful clutch of memories and photographs on the wall.  J1 enjoyed respite and quiet at his grand-parents by the seaside, while J2 indulged in some parental one to one time.
 
The count down to J2 starting school turned from months, to weeks, to days until eventually the school uniform was donned and the battle of walking to school commenced.  My mother asked if I shed a tear when my littlest hobo took those first tentative steps into school.  My response?  Hell no!  I delivered him, waved goodbye and left the playground doing a Friends, Chandler-style victory dance!
 
I love my boy as much as any mother could but he was so ready to go to school and honestly, I was glad that the time had come.  He was desperate for more.  More stimulation, more company, more knowledge.  More than I could give him on my own.  The time was right and he is loving it.
 
For me, having both children at school is something I have openly looked forward to.  However, it has still taken me these last few weeks to get used to.  The first week, from the minute I left the school I did not stop.  I had lists of house projects that I was determined to get done.  And get them done I did.  I was glad I had allocated September for 'Project Clean Up'  My home is more in order than it has been for, probably, the last 10 years.
 
I knew unless I did it first I would not feel comfortable kick starting the writing effort.  As I turfed out cupboards, ordered units and gadgets to assist with the mammoth sort out I started to feel overwhelmed by just how I was going to achieve my writing goal (GOAL : to have a first draft written and the first three chapters polished ready for The Festival of Writing in September 2015).  The Fear started creeping in.  As I de-cluttered more and cleaned harder I started to procrastinate.  I avoided going into my Writing Room.
 
As my house 'to-do' list shrunk, my panic grew.  I had waited almost three years for this time to become a reality and I was freezing up.  Then an email came through.  An email inviting applications to join in a six month project.  A six month novel writing project.  It was a beacon of light guiding the way.  A supportive, helping hand being offered. 
 
I applied.
 
I was successful.
 
So, suddenly I am doing it.  Writing a first draft in six months.  A week in and we have been served with foundation exercises that I have never considered spending the time doing before, but already I can feel has helped develop and grow my plot, idea, setting and characters.  It is fantastic to be learning again too.  I am doing things I will definitely do and use in the future.  I love how we have a calendar and schedule, anyone that reads my posts will know I am a routine and structure lover.
 
I have asked myself why didn't I think of that before?  Well, it's all new to me, novel writing, not the idea but the actual physical production of it.  Yep - hand up!  Newbie alert!  I have done the usual jump in writing, get to 20k and stop.  But I have never actually stopped and given the time to do the background work, probably ignorantly thinking the time would be better spent writing.  How wrong was I.  As I said, I am learning a lot already.
 
So, wowzer!  I am actually doing something I set out to do.
 
I am writing.
 
I am writing, a novel.   
 
My novel writing course is with the lovely Charlie and Amie at http://www.urbanwritersretreat.co.uk/

Thursday, 10 July 2014

The Disability Diaries : Growth

When the letter arrived home from school, stating that J1 had an 'Activity Week' approaching, I read it and wondered if it might all be a bit too much for him to cope with.  A whole week of being out of routine.  A whole week of travelling to different venues.  A whole week of extra curricular, over stimulation for his brain.

However, as the week drew closer J1 showed none of his usual 'out of routine' anxiety.  When I mentioned it to him in conversation, which I tried to do every evening whilst I got him ready for bed, he got excited and repeated back what he had heard in class about the activities.  He even started to do his 'excited' clench.
 
However, having 10 years of experience on my side, my own anxieties did not lay to rest as I pessimistically thought 'The meltdown will come at some point.'
 
But... It never did.
 
It never did!
 
I waited for it to start appearing, the constant repetition that 'He doesn't have too.' or the waking in the night crying and saying 'He'll stay home today.'  Like the rain you expect to see after having two days of blazing sunshine on the UK shores in the summer, I waited.
 
Nada.
 
Nowt.
 
Not a peep.
 
He continued to be excited and verbally upbeat.  So we responded in the same way and by the time Monday morning arrived the house was buzzing with talk of 'Activity Week.'
 
The first day I had to drop him to the venue as it was a park closer to our home than the school.  My own anxieties returned, in the past when I have taken him somewhere with the school he would cry for me as I tried to leave.  But this year, when handover came, he was more interested in his friends and what they had brought for lunch and didn't give me a backward glance.  I actually walked away, back to the car to the sounds of 'Byeeeeeee Mummmmmm!'
 
I could have cried.
 
With joy! 
 
Such progress!  Such growth!  I had not seen it coming.
 
Puffed up with pride I looked forward to the following day when I would be, cue dramatic music, staying for the day with the class on the farm trip.
 
I was not to be disappointed and I must say, etch it in stone for it to lay written forever, it was one of the best days of my life.
 
I got to spend the day watching, with my own eyes, just how far J1 has come since January.  He has built real friendships.  Buddies.  School pals.  The other children wanted to hang back with him, hold his hand, chill with him.  Spend time in his company.  They argued over who's turn it was to sit next to him for lunch.  And J1 revelled in it. 
 
As did I.  Gone was the school trip of past whereby if I so much as attempted to smile at another student he would burst into uncontrollable sobbing.  He wore a smile all day, as bright and beautiful as the sun.
 
We always look for achievements for our children.  For J1 this was a huge one.  It was one giant step towards independence.  The only thing I really pray he will achieve, and achieve fully in life.  Despite of his physical disabilities.  To have friends to laugh and joke with.  To have friends to share experiences with.  To get involved. To enjoy life.
 
My boy is growing.

Monday, 7 July 2014

My Writing Space in Pictures

A few people have asked to 'see' my much adored 'writing space' that I masterfully procured back for myself last week.  I think because I said it represents me.  So rather than putting a, probably poorly executed, attempt at a shot of the whole room I thought I would take a few snaps of the things in it, which give a good representation of why it means so much to me.

1. Family Life Tile

My lovely friend ML, used to run a wedding planning business.  During the course of her career she came across many cool wedding things but none more so, in my humble opinion, than this.  All the pieces of our wedding day immortalised into ink to be cherished.




The wonderful people who produce these can be found here : Your Life Tile

2. Antique Typewriter



I don't think this really needs much explanation does it?

3. Print of J1's Feet

Obviously J1 can not stand down to mark his feet for us, so it is always been quite difficult to get good prints and we have tried on many occasions.  But this one came home, quite randomly, from his after school club a few years ago and it took my breath away.  Hence it was swiftly framed and wall mounted.



4. 'To Read' Shelf

Yes, these beautiful articles (i.e books) are all waiting patiently to be the next called upon for my reading pleasure.  The bigger the pile gets the more excited I feel when I look at it.  Which some might think is odd, but to me it makes perfect sense.



Recently I have been on the hunt for books from my childhood and was tickled pink when I found my absolute favourite 'Tilly's House' by Faith Jacques.



5. My Mantra



When I first decided I was going to give this writing thing a 'serious go' I had this made in Wales.  And I think, not a truer word said, to be honest.


6. Bag Collection

I have certain places that are the holy grail of shops.  If ever I am lucky enough, or save enough to visit and actually purchase (instead of looking forlornly into the window, wishing 'If Only') I try and keep the bag as immaculate as possible so I can worship it.  Daily.




7. Barbie

And finally, a room saying 'Me' wouldn't be complete without a Barbie representative.  Past posts have already let out my secret.  I have collectible Barbies (and proud of them!) but sadly most of them remain in storage.  However, for now this is the Barbie Rep.



To some people this may seem sickly and self indulgent. 

You know what?

 I don't care. 

I live in a house of boys, where blue rules and every other word / sound is burp / fart / poo (followed by much hilarious laughter - seriously do they ever get bored of it?) 

So this is my space, my creative abode. 

Maybe one day the front page of my publishing contract will grace the walls and my own books line the shelf.

And maybe dreams will come true?



Wednesday, 2 July 2014

The Plan is Set - This Ship is Ready to Sail

So, I was back from Britmums Live.  I had written the blog post laying down the gauntlet.  I had purchased the A1 paper and colour pens to produced the progress chart for the wall.

I was ready to make this my year. 

To write.

Full of cocky arrogance and hope I opened the door of the 'largely abandoned for the last six months' room in the house.  My office.

Shock consumed my eyes. 

No longer was it the female domain I had left.  Instead the floor was almost entirely covered in other peoples junk

"But!" I wailed "This is my one little piece of space - what happened here?"

What had happened?  I had taken my eye off the ball.  The men in my life had slowly started to etch into forbidden territory.  And I wasn't there to ward them off.

With a fire in my belly I set about righting the wrong.  Framed football shirts and random shite from husbands work were removed.  Cases were returned to their rightful place (the loft).  Toys were evicted and marched back to the toy box.  Dumped paperwork cleared.  Surfaces polished.  And finally after two solid hours, rocking along to 'The Ultimate Running' CD...

Normality was resumed.

Shoulders were unclenched.

The face softened back to it's normal scowl.

The writing plan could commence. 

In all seriousness, my space is important to me and I intend to spend a lot of time within these four walls, doing what I set out to do (see Setting Sail with a Plan) so it needs to be neat, it needs to be tidy and it needs to represent me.  I am so lucky to have this room and I want to do it proud.  I have a 12 month plan (September 2014 - September 2015) with the culmination being the attendance of the York Festival of Writing.  I have a lot of work to do. 
 
I have a wall chart with my monthly targets and space to monitor the actual progress.  It covers a range of basis from blog posts, to word count, to short story competitions.  I am not under any illusion this will start prior to September as it is the Summer Holidays and full time Motherhood ultimately rules all.  If anything gets done it is going to be filed under 'Sheer Bonus'.
 
But at least the space is there waiting for me (as will I be, at the door with a necklace of garlic and waving a crucifix if anything remotely looking like a toy or work junk starts to get too close...)


Tuesday, 1 July 2014

From Baby to Boy

I write a lot about our life in respect of my eldest sons disability.  How it has an effect on us as a family.  How I cope, or more to the point, sometimes don't cope with the curve balls it sends our way.  But I also have another son, a younger son, who is four and perfectly healthy.

He is a very demanding little character, some days too much.  Other days he is so adorable and lovely I wonder - Why he can't be like that all the time? 
 
Don't we all though hey?

I am glad we have reached the age of four.  Both him and I relatively unscathed.  If somewhat a little hoarser from all the required raising of voice to get any acknowledgement that I need him to either bath; get dressed; brush his teeth; tidy his toys up; eat his dinner; not pull everything out of the drawer because the angry birds t-shirt is clearly already laid out on the bed. 
 
Four.
 
It is a big age. 
 
Four.
 
It officially moves him into 'Little Boy' phase of life.

As he rapidly approaches the end of his nursery days I have to admit I am just a very little bit excited that he will be going to school in September.  I am seeing many social media updates from other mums claiming they don't want their little one to head off into the big wide world of school yet.  But for us we are craving a new solid routine.  He is so ready to attend school that when the paperwork arrived on our door mat I had absolutely no hesitation in ticking the 'Yes - he will be attending full time' box, much to one friends horror who clearly doesn't think her child is ready.  Every child is different.  Every parent is different too I suppose.

Together over various shopping trips (trips to the shops are frequent and thus short for us to survive it) we have collected up polo shirts, v-neck jumpers, trousers, new underpants, PE kit, plimsolls (ugly looking things), lunch boxes (although now we have been informed that all children starting school in September 2014 will be entitled to free school meals but I haven't been able to burst his bubble on that one yet).  We scoured the Internet and found a company that could get his unusual name embroidered onto a gym kit bag (Mum of The Year award that one almost got me).  Finally, the one thing I am not looking forward to, a million 'iron in' name tags made.
 
As we wait for September to follow, what should be, a busy but hopefully pretty damn cool summer, we have already started on his adventure.  For him it is probably going to be the biggest, scariest and most exciting thing he has done in his short little life so far.  And I feel so privileged and lucky to be his mum to hold his hand at the start of this new era in his life.
 
We have been to visit the school twice on different afternoons, and he has happily charged around the playground.  We have borrowed reading books.  We have a whole host of other dates that are illuminating his road into education.  We have purchased one or two school logo pieces of uniform ready for school trips or concerts.
 
I am confident that he is going to be just fine in this transition.  I think it will be more telling on me when Thursday and Friday are no longer 'our days'.  Our lazy, TV morning followed by bath and then the playground or a picnic somewhere starts cease.  And although the voice is often raised he is my buddy.  He talks non-stop but he certainly ensures the day is never dull.  He forces me to stop worrying about the house work and encourages me to have a go on that zip wire!
 
So, although I am looking forward to the new times ahead and excited about the opportunities that may come along with change I am going to make damn sure to spend as much time at the park kicking a ball around as possible.  There are a few hundred turns on that zip wire to be had yet.
 
And as I always like to tell him 'He'll always be my baby.'

  


Saturday, 28 June 2014

The Disability Diaries : What I Didn't Want To Hear

You know that song, 'La La La,' that came out last year?  The one with the video where the little boy sticks his fingers in his ears when he doesn't want to listen to the man that is shouting at him anymore?  Sometimes I want to do that.  Stick my fingers in my ears.  Stick my fingers in my ears and not listen to the voice on the other end of the phone that is telling me they believe my son just had a seizure at school. 
 
A seizure.  A prolonged absence to be precise.  A form of epileptic activity.
 
In the graceful words of a dear friend : 'Shit.'
 
The school had mentioned they wondered if he may have been having some form of absence a few weeks back, but not having heard anymore since then I blissfully blocked it out and told myself they were probably just being over sensitive because he is still relatively new to the school.  And, in my defence, it hasn't been something that I have noticed at home.
 
But having said that, time at home is for complete chill and wind down space.  J1 is so tired from his school day, when he comes in his wants his tea, a stretch out with TV time, swiftly followed by lights out.
 
The phone call from the school, telling me this happened whilst he was having his physiotherapy carried out, was followed by a frantic call to J1's father and then straight onto the doctors.  Explaining the situation I felt physically gutted to have to relay that yes, he used to have them, but he hasn't suffered since he was about six. 
 
Why couldn't they just stay away? 
 
The doctor noted that she would make an immediate referral to a Paediatrician who would see him and probably refer him for EEG testing.  I remember the last time he had one of those.  He must have been about two.  For eight years we managed to avoid the need for any further intervention.
 
Gutted.
 
Since then he has been watched like a hawk.  Any lack of blinking observed and determined as 'an absence' or just a lack of blinking.  He has looked at me a few times, studying him intently and actually said in that sulky, teen (even though he is only 10) way
 
 "What?" 
 
Hearing that sends floods of joy through me.  My reply is to go and hug him, as tightly as I can, given you also have to hug whatever piece of equipment is keeping him upright at the time.
 
That is one of the really hard things about the form of J1's disability.  Because he has no trunk control, and I mean none, he always has to have support so it is almost impossible to give him a proper hug.  The equipment is stealing my hugs I always feel.  I try and lay alongside him on the bed and hold him, but he can't reciprocate and it is tough when he can't move to allow you to get your arm right under him.  It is now impossible for me to try and hold him up with just one arm, he has grown too much, too quickly.  I didn't realise how soon easy hug time with my son could be taken away.
 
Because of this I find myself being a little over zealous with hug opportunities with J2, but he is still so young he doesn't mind.  I wonder what I will do when the day will inevitably arrives where he pulls away.  Cue fingers in ears.  With eyes closed too.
 
So, after having just one day of feeling upbeat because things seemed to be coming together, this now raises its ugly head.  I once again am waiting at the mercy of the professionals to try and work out what is going on in that beautiful little head of his.  I asked him the other day, whilst he slept so peacefully.  I didn't get an answer.
 
I just hope they do.

 

Tuesday, 24 June 2014

The Disability Diaries : Recognising Progress

Quite often I write the 'Disability Diary' posts when I am frustrated or sad about an issue.  Writing about it is my way of settling the mind or venting the anger.  It doesn't solve the problem but it helps clear my mind or form a plan.  Sometimes it feels a little like positioning the pieces of a jigsaw puzzle into place.  After that there is just the fiddly task of getting the pieces to stick together.
 
A few months back I was feeling particularly overwhelmed by life as a parent of a child with severe disabilities.  We had decided to move to a new area, and it felt like we were starting all over again what with struggling to get the professionals in place that we need for J1 to have all his needs diligently monitored.  Just to get a phone call back, and not necessarily from the correct person, seemed to take four or five calls and messages.  It seemed we had moved but before we could get to the right place for J1, first a huge brick wall needed to be scaled.
 
A few months on and slowly I feel someone has started throwing us some tools to help climb that wall.  The school review saw a referral for a CND put into motion.  The school OT finally cleared up the confusion about what area we came under and we now have an OT, with an actual name!  With her in place, several of the other issues are now being sorted out.  As I write this post I am waiting for a hoist to be delivered and some Wendy Lett slide sheets for the bed.
 
Wendy Lett slide sheets are a smoother material cover that should make it easier to move J1 back up the bed.  What with the rolling him from side to back to change his pad and get him dressed, he usually ends up out of position.  I am a 60kg female and my son is 54kg.  To try and pull him back up the bed, against the friction of the bed sheet is no easy task.  I don't expect it to be easy but I am always looking for ways to make it easier.  To know these sheets have been available but never suggested to me before is quite frustrating.  He is 10 years old, and we have been aware of his disabilities for 9 of those, yet I still feel as in the dark as when we started.
 
Saying that, I also have 9 years of skin thickening experience and now know sometimes stamping the feet is the only way to get anywhere.
 
On a further note in praise for the OT, following on from a general discussion we had regarding 'personal care' for J1.  When J1 goes to his grandparents for respite he has an adapted bathroom, thus a shower, however, our house is only rented so I have to bed wash him from head to toe every morning and, sometimes, depending how warm the day has been night as well.  We make it fun and it does give J1 quite a good physiotherapy session as each body part gets moved individually whilst being washed and dried.  But, particularly in the summer months and as he gets older, a good 'soak' is quite lacking.
 
Cue, The Water Genie.  This ingenious item is essentially a blow up paddling pool for the bed.  It then comes with a portable water unit with attached shower head that provides approximately 10 minutes of continuous warm water.  After washing it sucks all the water back out.  Now, I am very excited that we are going to get the opportunity to try one of these, despite a few reservations.  No matter what equipment you get to help, they all have something you haven't thought of.  For example, in this case I am wondering how quickly it will remove the water because for the length of time you are removing the water, J1 will be lying wet and probably getting a little cold whilst waiting for the water to disperse so he can be dried - see what I mean? 
 
Another example of this is hoisting.  Yes, a hoist is essential and much needed and we could not live without one.  But people say to me 'Well you have a hoist don't you?' when I say it is difficult for me to move J1 around as he gets increasingly bigger.  Like it sprinkles fairy dust over him and magically lifts him through the air and into his seat.  The reality is this; a hoist is a large and heavy piece of equipment before the weight of the person using it is added into the equation and to move it on carpet is pretty damn hard.  Positioning its huge legs so you can get close enough and in exactly the right position takes patience and precision.  Before you even get to that stage you have to get the hoist sling in place.  And that is so much fun. 
 
The hoist sling needs to go underneath the body and be in exactly the right place otherwise the lift will not be at the correct angle and not lower into the chair in the right position.  To get it underneath the body, J1 must be rolled onto this side (just to set the scene accurately J1 can not assist with this, his weight is, although I hate to use this expression 'a dead weight').  Once on his side you must try and keep him there, whilst laying the hoist sling as flat and accurately as possible over the length of his body (all along the back from top of his head to about his knees).  The aim here is to try and get as much of the sling under the side he is laying on as this makes it slightly easier when you roll him back and you have to try and pull the sling material through so he has equal amounts either side (even being a veteran at this usually requires more than one attempt).  Then all the straps (six in all) can be lined up ready to hook up to the hoist arm.  Easy as hell hey?! 
 
But as I said, this post isn't to gripe.  I am fully aware in the case of disability, nothing is easy.  All these things are just to try and make life easier.  And I am so relieved that we now seem to be getting somewhere with it all.  Equipment is just one small area in a huge sea of things he needs to make his life as pain free as possible.
 
J1 should, this very week, be receiving a referral to a specialist spine unit.  This was never an area I wanted to have to venture into but the reality is, we have and we just have to deal with it.  Our job is to ensure he is seen by the best people he possibly can be.
 
We have managed to get him into a new eye clinic and also referred for a functional assessment (eyes and brain processing).
 
We persevered and had a very good appointment at wheelchair clinic.  For sometime we have been wanting to see if a specialist chair called a CHUNC would be suitable for J1 and I am pleased to report we are going to have a two week trial with one.
 
All those pieces of the jigsaw that seemed so jumbled and a mountain to sort through are now lining up and with more patience and methodical work on the part of everyone involved, should start building a better picture for J1. 
 
And that is the only thing that matters.
 
This is always going to be an on-going and continuous way of life for us.  So for now, it is a moment to celebrate moving forward, that is as important as complaining when we aren't.
 
 
 

Monday, 23 June 2014

Setting Sail with a Plan

In my last post I lamented about how much I had spent the year looking forward to attending Britmums Live, and for the friendships and social aspect that was whole-heartedly true.  But a small, annoying part of me kept chirping up and saying 'But you don't really belong this year do you?'
 
In the last 12 months I have probably completed a handful of blog posts, I slipped away from networking, Facebook and Twitter.   I would love to say this is because I have been focusing on writing my novel but that would be, well, a bareface lie. 
 
Of course I kept taking that little flea in my ear and stamping on it with the force of an elephant stampeding, but it didn't really go away.  When I arrived on the Friday and met with my fabulous fellow blogging friends, the little niggle actually got stronger rather than dissipating like I thought it would.  I looked around and surveyed at how amazingly, bloody well my friends were all doing and progressing with their writing plans.  They all seemed to have taken our success from the agents sessions last year and really run with it.
 
First drafts of novels had been completed, mentors sought and secured, poetry and flash fiction anthologies developed from scratch, agents approached, writing festivals attended and some were actually involved in the running of the Britmums Live event!  For every one of those achievements by those wonderful people I am truly proud and in awe. 
 
But it also served to me a stark reminder of what I had not achieved this year.  It seemed as if just when I was starting to get somewhere with my blog and writing, good feedback and a little bit recognition from unexpected sources for example, I stood, frozen like a rabbit in the headlines.  And whereas my friends in the same position took their little bunny tails off to the safe side of the road and saw the opportunity to run wild in the big green field, I decided to stay, stuck frozen and scared in the headlights.
 
For the first two hours of the event this made me a little sad.  I felt little enthusiasm to be there.  In my mind I was sulking, a bit like my four year old does when something doesn't go his way.  But I was only cross at myself.  I could make excuses.  To be fair I have had a lot on my plate this year.  Oh yes, I could find a perfectly legitimate and plausible reason for why I haven't made any progress with my writing plans.
 
But the long and short of it is this : Everyone has had a lot on their plate.  The bloggers keynote readings made that very clear and the only reason I have barely put pen to paper so to speak this year is because I haven't been bothered too.  I could have got up early, stayed up late, left the housework, insisted that I have an afternoon at the weekend to work.  These are all things everyone else has done in order to make progress.
 
All of the authors in the first afternoon session I attended categorically stated that they have hectic family lives.  They have children, husbands and houses to run.  But, in order to write they had to make sacrifices, just like their husbands have to for work.  But whereas, when you are out at work you don't see you have the choice, you just have to do what you have to do, when you are a writer making your own schedule you have to physically choose to make those sacrifices.  Because as I have proven this year, it is so easy to not make them and, quite frankly, get nowhere.
 
By the end of the two Friday 'Write' sessions I decided to turn my thinking more positive.  The reality was I had put nothing in for the last 12 months and thus had very little to show for it.  But, I was surrounded by the best possible example of people who had put a lot in and had much to show for it.  That is an inspiring thing (the whole Britmums environment is) so I decided by the end of the second session pouting over the last year was a waste of energy, bugger all I could do about it now. 
 
All I can do is move forward.  To acknowledge the self doubting, cautious side of my nature and then kick it to the curb.  To have more faith in my ability.  To spend some time planning (I am pleased to say I did actually even start to do this at the conference whilst I was enjoying some quite time with [brags] an award winning friend on the sofas outside whilst the warm summer breeze lapped over our exhausted faces). 
 
I don't know why I hold back, I have always been the same.  I am not getting any younger and this is the thing that I really want to do.  I acknowledge my life is hectic and I have been waiting for this new period in our family life to come around (my youngest will be starting school in September).  A whole new era will be starting.  A whole new routine.  A whole new chance.
 
So I have from now until the end of August to make a 12 month plan (it will be big and colourful and placed on the wall - like a hawk eye).  At the end of the 12 months (September 2015) I want (will) be in a position to go to the York Writing Festival with confidence and a first draft.  Many things will make up getting that confidence; getting my blog active again and engaging with people and getting involved with the communities; entering writing competitions and submitting feature pieces; asking for feedback; researching my book genre market - writers and agents.
 
In short getting back out there and not being afraid. 
 
That can't be so hard?  Right?

Sunday, 22 June 2014

Three Years of Britmums Live - A Journey

In June 2012 I was a virgin.  A Britmums Live! virgin that is, of course.  Actually, in all honesty a complete blogging conference newbie.
 
Over the two days in that first year I diligently attended every session with regard to blogging, in my long planned, schedule of the events.  I made a book full of notes, visited every sponsor, signed up to almost everything and left with so many goodie bags I could hardly walk to the station.  I made acquaintance with a lot of bloggers, and unbeknown to me at the time, true friendships with two or three others.
 
I ate and drank too much.  And I allowed my mind to be temporarily pulled away from my duties as a mother, wife and housekeeper.  It was two days just to think about blogging.
 
I was exhausted mentally but I loved it. 
 
I swiftly booked for Britmums Live 2013 and looked forward to it wholeheartedly for the entire year.  Over the course of those 365 days my blogging continued but my writing ambition also started to develop, so by the time June 2013 came I was thrilled to see the conference also start to include sessions on writing, publishing, and how to approach an agent.
 
Another new thing was introduced.  Speed dating with an Agent.  A small time slot whereby you could pitch your idea to that mystical figure : The Literary Agent.  I so desperately wanted to think I could do this, but my book idea was so new in the making I had little confidence.  However, one of my wonderful fellow blogging friends told me to be confident and do it.  With the decision made, next came the hurdle of how, out of 700 delegates were we going to bag ourselves one of those few golden slots. 
 
Time to be brutal.  We were outside the doors two hours early, for the first hour and a half, we were the only two people there.  I was, still doubting myself and so tightly wound, worrying that a rampage would occur and our wait would have been in vain.  That did sort of happen actually, but my dear friend shoved me to the front and practically wrote my name down for me.
 
My appointment wasn't until quite late in the day, and I felt physically sick for the duration leading up to it.  I felt even worse when my time came and I got in front of the Agent, who's mind was obviously going at a hundred miles and hour and she looked at me expectantly.
 
As my brain and mouth decided to epically fail me, I shoved my synopsis across to her and tried to remember how to breath whilst she scanned it.  Ultimately I got amazingly positive feedback and was walking on air in a mixture of sheer relief and astonishment that I had got 'POSITIVE FEEDBACK!'
 
So, it was worth it.  But on reflection my first day had been largely spoilt because I was so stressed out.  I decided I had to make day two more relaxed.  I realised  I didn't need to go to a session if there wasn't something I really wanted to go to.  So I largely socialised and mingled.  That too was fantastic, I chatted to authors and met Katie Piper.  I got as much out of year two, but in a different way.
 
My ticket for Britmums Live 2014 was booked on my return home and yet again the event was hugely looked forward to the whole year.  My plan for this year, to be chilled.  I took my time getting to the event, had lunch and a glass of wine whilst perusing the Agenda and then checked into my hotel.  I guess I had the comfort of knowing a lot of people that were going to be at the event and consequently it took a lot of the nerves away. 
 
When I walked into BRIT 1 for the opening keynote it felt like just yesterday I had been there and really surrounded by old friends.  As we all looked around it was wonderful to be able to nod in acknowledgement to people, to wave frantically mouthing 'speak to you after!' to others.  This time it was so much more about the social aspect.  I did attend the WRITE sessions and thoroughly enjoyed and felt I benefited from them. 
 
On day one, my friend and I discussed the possibility that we wouldn't attend next year.  Maybe it was time to find more writing focused conferences, that we felt maybe we had learnt what we could from this particular event?
 
By the end of the BiBs, I realised it isn't all about the learning and attending sessions to help us progress.  The event for me now is a wonderful opportunity that does not arise very often in the world of a stay at home mum / wannabe writer, to be 'just me' for two days.  To enjoy friendships in person that the rest of the year are virtual, to indulge in a bit of time to myself that if I didn't book and come along to an event like this wouldn't happen. 
 
For me the Bloggers Keynote is the pinnacle of the event.  They make you realise that other people have sadness in their lives, and that by writing about it you are not silly, weird or stupid.  You are all just trying to cope anyway you can, and for us, writing is one of those coping mechanisms.  The Bloggers Keynote is the absolute physical representation of a supportive and inclusive community.  A community that is called Britmums.  A community I am proud to say I am a part of.
 
And my ticket for Britmums Live 2015 was booked before I had even left the venue this year and I am looking forward to it already.
 
With special thanks to the following people for making this year so great : Sarah at Older Mum in a Muddle, Anya at  Older, Single Mum, Ericka at  Mum in the South, Ellie at  Mush Brain Ramblings, Amanda Jennings.
 
 

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 naïve 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.  

Wednesday, 26 March 2014

The Disability Diaries : The efficient PA

Wikipedia says this about the role of 'Personal Assistant' :
 
"...A personal assistant or personal aide (PA) is someone who assists in daily business or personal tasks... a business man / women may have a personal assistant to help with time and daily management, scheduling of meetings, correspondence, and note taking..."
 
When you are a parent of a child with special needs and/or disabilities you become a PA for your child.  Along with the normal roles of being a mother or father - care giver, cook, cleaner, entertainment provider - all the usual things we do in order to keep our children happy, clean and fed - a giant part of your life must be given over to an administrative duty you didn't know was possible or needed for someone other than a 'business man - or women'.
 
Luckily I worked in the administrative/PA field for 15 years prior to becoming a stay at home mother so it comes as second nature, but even for me, who alluded to a career in that organised and methodical manner it can be arduous. 
 
J1 is now 10 years old.  I am used to dealing with professionals and 'The System'.  I am used to the long waits, the vague promises and being passed from pillar to post to find out a yes / no answer.  Don't get me wrong usually, in the end, you get a result but to get there you have to ring, email, chase, note take, leave messages, and ping pong from one service to another in a manner that even Miranda Priestley from The Devil Wears Prada would be proud of.
 
I have days where I can not face it.  The weekly list of 'people to contact' sits staring at me and the thought of leaving another answerphone message that doesn't say 'Ring me back before I end up on your doorstep with my disabled child and you can see for yourself why I need X,Y,Z' is too much.
 
Then I will catch a glance of a photograph.  Of my little boy trying to smile from his wheelchair.  Or watch his video that he insists I take of him on my phone singing Katy Perry's 'Roar' (or whatever his favourite song of the moment is) and I realise this is my job in life.  He needs my voice.  He needs my PA skills.  He needs his mum and dad to chase these people and sit in those meetings. 
 
Then I can get into full flight mode.  One number after another is dialled, I speak brightly and politely, because honestly, we NEED these professionals on our side and as frustrated as I can sometimes feel with them, I do understand that a lot of the time their hands are tied, money is sparse and they have huge case loads.
 
We have been re-located for four months now and I am still trying to get new professions on board.  This is the fourth or fifth week of calling round child development centres, school professionals, doctors, trying to establish who I should be working with to ensure my son is getting the help he needs to live the best life he can with the hardships he endures on a daily basis.
 
He needs equipment.  He needs to see specialists.  He needs to have his abstractly growing hips and spine monitored.  He wouldn't choose to need all of those things.  I wouldn't wish it on my worst enemy but that is the hand we were dealt and it is the one we live with every day.  Any family in the same position knows that is enough to cope with.  Having the added work load of having to be as organised and on the ball as the best paid PA in the world is just something we do.
 
Files and files of notes, appointment letters, referrals, delivery notes, invoices sit in my loft.  Put away as a record of our life.  A life touched by disability.  Sometimes when I venture up there I look at it and feel proud, that it is organised and efficient.  Other times I want to kick them all over the cold space and see them flutter into oblivion screaming WHY HIM?  A reminder that this has been the way of it for the last 10 years.  Thankfully I don't have to go into the loft very often.
 
Why have I written this?  Because I have just put the phone down from this weeks phone calls and I am sitting and waiting for all the promised calls back.  I am home alone and there was no one to rant or off load onto.
 
So instead I decided to write.

Monday, 24 March 2014

Proud

I realised, just the other day, that I am very proud of those around me at the moment.  There must have been something in the air for the last 12 months because while I myself have come to a cross-roads and I hate to admit, somewhat of an identity crisis others have been squirrelling away blooming.
 
My husband, takes spot number one.  He has single-handedly got a business off the ground and although the odd argument over the length of hours he works sometimes raises his head, what he has done in the last eight months is pretty astounding. 
 
Then there is one of my friends, who took the plunge and left her desirable marketing position because, to be honest, the company she worked for didn't want her to be involved in her family life very much, and started out on her own.  Now she has some solid clients, chooses her own hours and does the school run without the heart-racing thought of 'Will I make it to work on time today?'
 
My other friend decided to take a whole life break because, frankly, it was breaking him.  He packed up his job, flat and social life to return home where his family needed him as much as he needed them.  In doing so, and taking some time out from a longstanding fast paced city life he managed to establish what he wants to do with the rest of his life.  It means going back to basics, back to college, back to studying.  But, he is doing it and making a change.
 
Another friend and fellow blogger has written a draft of her book.  Actually sat down and done it.  From the planting of a seed to a whole first draft.  Start to finish.  Oh and compiled, co-ordinated and published an anthology in the middle of that and maintaining multiple, fabulous blogs.  My literary wonder women.  Her writing should most certainly be checked out - Older Mum in a Muddle.
 
One dear person in my life has created her own Pampered Chef emporium, oh as well as running an online wedding and events décor service - Pistachio Inc.
 
An old school friend started her own dress boutique, another a baking order service and another a craft site.  I wonder if there was something in the water where we lived that maybe enhanced the entrepreneurial gene?
 
 If so, where is mine.  I would like to do a lot of things but am finding with much frustration that I am failing miserably at doing something I used to be renowned for being good at.  Starting and FINISHING a job.  I seem to have lost the ability to see things through.  I have plenty of ideas, but feel I lack any substance right now. 
 
Plenty of ideas but not plenty of time.  That is what I have been telling myself.  But I look at all the wonderful things those amazing people around me are doing and I marvel.  You are finding the time and will power.  You all are truly fantastic.  I aspire to you all.

Friday, 21 March 2014

Dear Blog ...

 Where to start, after seven months of not blogging, is a tricky one.  I guess a good place is to give an explanation as to the reason for the break, but in reality there hasn't been one, all definitive reason I decided to abandon Lynsey The Mother Duck for over half an annum.
 
Quite frankly I haven't wanted to blog, and on the occasion when the desire has returned I just have not had the time.  2013 was the worst and best of years.  A very strange mix that I do not particularly deign to experience again.  If I was a thrill seeker then maybe I would crave that rapid rollercoaster existence, but I am not and I do not.
 
I would never try and re-hash seven months in a blog post, but I believe the points to note are that we moved, again.  Actually scrap that, we didn't just moved we relocated.  This has meant our whole routine of life is completely different.  A new location, new nurseries, new schools, less hands on help with J1.  But I have to say, right here and now, best decision ever.  We all love our new abode and the change has made our little family flourish.
 
This would be one of the reasons for the lack of writing.  A re-location takes a lot of time and effort, not just in the initial move, but in establishing a life in a new area.  New routines mean 'spare' time has been even more sparse, and setting up house and schedules has been the priority. 
 
However, with the dawn of the season of spring - a wonderful time for new beginnings - things seem to now be in place and I myself have found a new routine.  My duckling free time has been divided into 'house-hold' running and writing.  It started last week and I was ecstatic when I hit my word count target of 7K, on my current WIP.
 
Then I thought of my little old blog.  Untouched.  Left wanting.  And I had the desire to write. 
 
So I sat down.  And I did.