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.

 

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.