Disability Diaries : The Spine

Back in some part of 2014, my son - J1 - who suffers with quadriplegic cerebral palsy, was referred to a spine specialist with suspected scoliosis.  This completely threw me through a loop and I seriously went into melt down.  After the first appointment, when we were given a very thorough and clear talk about why he had been referred and what they were looking for, what could potentially happen and the probable timescale of this, I did what any self-respecting special needs mother does.  Went home, had a little cry about the unfairness of it all and then pulled myself together by processing the information.

A special needs mother doesn't get long to linger and wallow in self pity - there is too much to do.

For the last two years we have been back and forth for check up's with the spine surgeon and true to what was predicted in the first appointment, they have been just that, monitoring appointments.  He has X-Rays taken (never easy when a child can not sit up unaided), the specialist looks at them on the computer screen, feels down his back, spine and ribs, looks at him sitting in the chair from all angles, then addresses us, the parents.

"It's definitely getting worse.  Would you agree?"  Begrudgingly, we do.  At this point he usually says it's still not imminent for surgery and he will see us in six months time.  We leave the building and breath a huge sigh of relief, while the only thing J1 is concerned with is whether he can have a sneaky McDonalds for lunch.  But we do understand it is only a short term reprieve.  Just another chance to come up to the surface of the water and grab another mouthful of air.

Only, last time the Specialist diverted from script.  This time he 'hmm'd' more than normal, looked at the X-Rays more frequently and for longer.  Checked J1's age - twice.  As he ran his hand up and down the spine for a third time, he said "I think it's time for J1 to go on the surgery list.  Don't you?" 

It was like the air had been sucked out of the room and I what I wanted to say very petulantly was "No, actually, I don't think it's time, you are not going anywhere near my son's beautiful spine.' and knock his hand away. 

But I didn't, because I am a grown up and after two years of processing the information I have finally and rather ungraciously accepted the fact that my son is going to need spine surgery. 

Nevertheless, the specialist ploughed on warning us there is a fairly long wait list (about a year) and lots of appointments and check up's to go through at the hospital before it would happen.  Plus he would be seeing us again for another check up in six months time.

Six months time is now here.  The appointment is in two weeks.  Sleep is harder to come by all of a sudden, it feels like our grace period is coming to an end.  J1 is completely oblivious to the enormity of it and I am torn if the best thing to do would be try and tell him about it, to explain or not.  Sometimes I wonder if he could comprehend it and other times I think, not a chance.  He is such a worrier.  He can fret about something as small as a change in school bus pick up time for a month before it happens.  Would I be crueller by putting this into his mind, or keeping him in the dark?  How can I expect a 13 year old with delayed learning to process it when I am still not sure I am ready to face it?  You see, nothing prepares you for this shit. 

As a parent of a child with special needs you have to be accommodating in who you put your trust in.  Most of the things your child will go through within their life you start off having no idea is going to happen.  When you get a diagnosis, you think you are in the know, but you aren't.  They don't warn you about the weird and wonderful consequences of what not being able to walk creates - deformed hips, collapsed ankles.  They don't tell you that because your child has no trunk control his body weight will pull the spine out of shape and crush his pelvis. 

I guess they don't because it would just be too overwhelming.  Who could cope with finding out all of that?  They let one thing come at a time so you can digest it, process it and accept it.  They give you that chance to get to the surface for air. 

I guess at times like these, with the spine surgery, there is just one thing to do.  Prepare ourselves for it.  We are going to have to take a bloody great oxygen tank down with us and make it last.  Be strong, get through it, be the voice shouting in the corner for our child - because as a parent of a child with severe physical disabilities and special needs it's what we have to do.  There is no other option.

But sometimes, you do need that good cry first. 

   

The Disability Diaries - Are coming back

It has been just over a year since I last posted on Lynsey The Mother Duck.  As explained in my last post, Beginnings, I wanted to take the little time I have available to start writing a first draft and to start a book review blog.

I am pleased to say I have managed to achieve both of those things, I am in the process of writing a first draft, via a structured course with Retreat West, and my review blog The Very Pink Notebook, has just celebrated it's one year anniversary. 

2016 proved to be somewhat of a stressful year for the length and breadth of Britain and for our family there was no exception.  It was a year for forcing the hand of change, with that came positives and negatives.  The biggest change was probably our move from England, across the bridge to Wales, and I am pleased to say it has been very positive. 

As is usual with any move, from a parental point of view, the biggest source of anxiety came from changing the children's school.  However, both boys have adjusted to the change amazingly well. 

J1, the little 4lb, 8 week premature baby that once fitted in my vest for kangaroo care, turned into a teenager at the end of last year, and some days we do see this...

Kevin the Teenager

(picture : wtffashionshark.com)

...which, given all his disabilities is, for us, brilliant news!  But a heck of a lot is going on with him at the moment and it is for this reason I have the compulsion to start writing on this blog again. 

So, I think I am going to bring back The Disability Diaries.  These are posts, written from the heart, about my real life experience of caring for a child with severe physical disabilities.  From the heartbreaks to the triumphs.  From the kindness of strangers to the fights over services and accessibility.  Written to help raise awareness of the day to day struggles a family can go through but equally to express the joy that can only be felt, when your eyes have been opened to a whole life you was not expecting.

  

 

New Beginnings

A very dear friend recently said goodbye to the blog for which she is known and loved.  A brave step, but the right thing for her.  We discussed this together, at length, in June and she stuck to her guns.  Seeing her 'take the plunge' prompted me to think about this, my own family lifestyle blog, which has been largely ignored for the last year. 

 

Whilst I adapted to life in a brand new area, away from the on-hand help of my parents, the small amount of child-free time I possess has been thinly spread.  Volunteering at both children's schools (a great way to settle into a new area and meet local people), keeping on top of all of the normal day to day running of our home, administrating the endless rounds of appointments and chasing professionals to ensure J1 has everything for his special needs and finally, planning, researching and writing the first draft of a novel. 

Blogging has become such a huge thing now, much more so than when I tentatively started out four or five years ago.  There are some absolutely amazing family life bloggers who have taken it much more seriously than I ever did, and flourished and reaped the rewards for the time and effort they put into making their blog work.  It is heartening to see. 

 

But a career was never why I started my blog.  Mine was born out of a pure need to get all my mixed up thoughts out of my head.  That coupled with a desire to write again.  After turning from a single mother with a busy full time job in London, to suddenly being a new wife and stay at home mother to my seven year old son with disabilities, and a new born, I found I was still constantly on the go, but had no one to talk to about it anymore.  When I stopped working all I could think about were the things I would not miss; the long, temperamental train commute; the cold, dark, early mornings and often late nights; sitting in an airless office with the sun shining outside; saying 'Yes, of course.' when what I really thought was 'Do it your bleeding self you lazy arse.'  I hadn't taken time to consider that as you grow older, friendships are mostly work-based and if you are not working ...

 

Let's just say it took me a while to adjust.

 

Blogging helped me to do that.  I not only found the therapy I needed in writing, but also a wonderful community.  Online acquaintances become real people, and I am lucky enough to say, real friends after being brave and attending the Britmums Live weekend that first year.  And for the next few years it became our annual get together.  But peoples lives move on, including mine, and suddenly I do not have a baby / toddler at home to constantly be entertaining and keeping ten steps ahead.  A window of opportunity opened. 

 

I came from a successful career I enjoyed but had never had a real passion for.  I grew up in an area where people were workers, no doubt about that, my whole family have toiled their whole lives - but no one said to us 'What do you really want to do?'  Work was to earn money and keep your head above water.  Choose a job you could do and maintain. I did well, flourished in my roles and climbed the ladder to having a career, rather than just a job, and that is when I realised, I could have done anything had I known.

 

I am not saying University was frowned upon, not by any means.  I was quite academic and I was one of the few encouraged into further education, but I still didn't have any idea of the opportunities, I have since discovered, would have been available within the literary industry had I really taken the bull by the horns in my younger years.

 

But I digress.  I guess what I am trying to say is I love my blog, it was my baby and it has been lovely nurturing it and watching it develop.  But in the main scheme of things, it is run of the mill, one of many, not one of the best.  I have sat and looked at it, many times, over the last year and thought I just don't know what to write?  I suppose because I have now adjusted to how our family unit works, I don't need to write posts to try and straighten out the thoughts in my head.  Well, apart from on one thing. 

 

Disability.

 

The disability section of this blog, The Disability Diaries, for which I can probably say has been it's most successful part in terms of 'blog success', is still something I do find myself needing to write about.  I probably always will.  

 

So, I am not closing this blog down.  But, I am making it purely about The Disability Diaries. 

 

I always wanted The Diaries to help raise awareness of the challenges faced by those who share disability within their lives in some way, and I want to continue to do that, it is as vitality important to me as forging myself a new career involving the written word.

 

Which, by the way, I am also planning on doing.

 

I am launching a new blog in February called The Very Pink Notebook, dedicated to all things bookish.  Reviews, releases, author interviews, tours.  As soon as the site is live I will be posting the link.  If you love the world of books as much as me, please follow and support.  I hope it gives you as much enjoyment to read as I am hoping it will give me to write and develop.

 

Of course, I continue to pursue the big dream too.  The novel.  I am having a wonderful time exploring and learning all about the industry which I hope to one day be a part of in some way.  There is a blog prepared for that too.  I will document my journey - but now is not quite the right time for that launch.  When it is you will be first to know.

 

No, when I was young no one really ever asked - What do you want to do?  So I decided to ask it myself. 

 

Wish me luck.      

 

 

   

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.

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/