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.
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
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.


1 comment:

  1. Oh Lynsey.... I am sorry to read this. How shocking for all of you. I dearly hope this is just a phase, a one off kind of thing, and doesn't become a regular pattern. Big Hugs to you too - I'll bet you can do with a few. And I really really feel for you that hugs with J1 are so limited - that's such a cruel twist of fate. XXX


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