Wednesday, 1 March 2017

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. 


Saturday, 25 February 2017

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 :

...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.