The Disability Diaries (The Life of J1) : Diagnosis Day (or Find Out Accidently)

When we left the Disability Diaries last week I had explained how my little miracle J1 fought his way into the world at just 32 weeks gestation (The Birth and the Beginning of our Journey), how we left hospital with no clue that anything was wrong and despite (with the benefit of hindsight) pointers being there, I was a young, single, first time mother and I suppose that I didn't dare let my mind wander into the possibility of their being anything wrong.

So, after almost a year of questioning, at the very least, the delayed development J1 was suffering I finally got a Health Visitor who wasn't in my house five minutes before she said, yes we must certainly refer you to a Paediatric Consultant. 

My memories of 'what happened next' are sketchy (there has been so many appointments since and specialists seen) but there was numerous appointments in very quick succession where professionals would hmmmm and ahhhhhh and scribble notes down, then leave the room without saying very much.  Although, as mentioned in my previous post, due to a TV programme (of all things) I had happened to watch, in my heart I knew what J1 had.  But my head, my head kept telling me that no one had told me what I suspected and that kept me in a false sense of hope.  I would swing from 'When will I be told?' to 'Maybe there is nothing to tell and it is just delayed development?  Surely someone would have sat me down and told me by now?'

I read lots of stories on the internet and in literature, written by parents about their 'Diagnosis Day'.  They got up and knew they were going to the appointment whereby they would get some information that would change the whole families lives forever.  I was waiting for that scheduled, big day.  Like a letter would come saying Re : J1 Diagnosis Meeting, and I would dress smartly, like a bold strong women to go and receive the news.

But that letter of course never came, well not directly to me as I shortly found out.  Because although sometimes I guess it does work like that, it didn't for us.  Our 'Diagnosis Day' came as a bit of shock to be honest, not from any of the professionals we had been to see, but from a regular Health Visitor check up at home. 

The HV had left her binder of information open on us as I sat opposite her, while she found something else in her bag the letter on top, was, I guess the sort of thing I had been expecting to come through the post (but not quite so graphic) :

Re : J1 - DOB - Confirmed Diagnosis : Quadriplegic Cerebral Palsy (affecting all four limbs and torso) and Myoclonic Jerks (frequent)

It was like someone had punched me in the face, stomach and knees simultaneously.  There it was in black and white.  Plain and simple.  What we had been waiting for.  What apparently had never made it through our post box.  I remember her finishing looking for whatever it was she had been searching for and clocking me staring, unblinking and fixed at the paper.  I guess from my face she sensed something was a miss and put two and two together when I finally managed to stutter 'So, is that my babies diagnosis then?'. 

We then went through the obligatory minute of profuse apologies of having to find out like that.  Of course she assumed that we had been informed by the same letter etc etc.  The long and short of it was it wasn't her fault, our letter had gone AWOL and now I knew.

Now, I knew.

After she left, my baby and I alone again together, I remember watching him sleep for a long time.  He looked so perfect.  He was so perfect.  But the tears didn't come then.  Where do you even start to process that information?  Well I suppose I didn't.  The words kept banging around my head, like it was a large, empty, voluminous space, and each time they bounded off a wall they got louder. 

Until he woke and I had to continue to do all our normal mummy and baby things, feed him, change him, bath him, play with him, sing to him, cuddle him, love him.  All the things we did 'before we knew'.  That day dawned a new era in time for us; the 'before we knew' and 'after we knew'.  That day now etched in stone as 'The day that changed our lives forever'.

Life had to continue, but somewhere along the line as life carried on as normal I had to actually tell everyone that my baby had Cerebral Palsy.  I wasn't ready to do that.

I didn't even really know what that was. 

The Long Learning Road will be next weeks feature.