The Disability Diaries (The Life of J1) : Nine

Nine years ago today I was a new Mother of a day.  Eight weeks earlier than planned.  My baby boy was in SCBU High Dependency, covered in tubes, wires and face masks.  Rather than being in the peaceful surroundings of our warm and loving home, he was surrounded by loud, bleeping machines and nurses scurrying back and forth.  A wide eyed blond women sat staring at him, with a shocked expression, for 14 hours a day.  That women was me.  His mum.

I have written, numerous times about J1's birth, the fact that he was premature and the sad day we discovered he had suffered brain damage during the last hour of being in my womb and had been left with the condition Cerebral Palsy.  I have noted on many posts how severely physically disabled the Cerebral Palsy has left him and how we all face challenges on a day to day basis that we never knew were possible before J1 came into our world.

But in this post I want to talk about J1 making it to the ninth year of his life.  How I have realised over the last couple of years in particular, as we have sadly said our goodbyes to some children who J1 started school with, who have been taken as Angels and watched others fight for their lives and beat the odds, how lucky we are to have our little boy here to celebrate. 

I do not like to dwell on the fact that although J1 has a condition rather than a degenerative disease that will progressively get worse, there are factors within that condition that could threaten his life.  The fact that he suffered with Epilepsy in his younger years.  That he can have reflux in his sleep that could result in him choking to death if we were not close enough to get to him to move him.  That due to him not moving around his bowels to not get the movement needed to clear them easily, which if ever was left to take hold could cause all sorts of problems.  That because he does not walk his bones start to develop in the wrong way, which need operations to rectify.  Big operations, that come with all sorts of risks. 

These have to all be pushed to the back of my mind to get through the day, otherwise I would be a wreck sobbing on the floor.  However, every now and again I think it is important to take stock of these things and realise that despite all of those issues, he is a happy, joyful, cheeky and on a day to day basis healthy little boy.  That he trumps all of these negative possibilities with quite a gusty 'Ave That!' without even knowing it.

It is a joy to see my, once scrawny baby, who's legs were layered in rolls of skin because he didn't have any fat - eat his breakfast, lunch and dinner better than most other nine year olds we know.  To hear him sing along with the TV, even if we have seen the same programme a million times.  To watch him now interact with other, able bodied children his age, whereas once he would fear them.  To even see him be naughty and cheeky on occasion.

So in celebration of your ninth birthday J1, we thank you for being wonderful and appreciate everything you are.