Eleven

As I took down the last of the Halloween decor, indulged in purely for the delight of J2 and his friends, I mentally ticked that event off of the 'to-do' list.  Next my mind moved to the next big event for our house - hold.  A birthday.  The day it falls is, 6 November, but for me, it starts on the evening of 2 November 2003.

 

Eleven years ago, strangely enough on a Sunday night as it fell this year, my waters unexpectedly broke.  One minute I was watching Dogma and the next I was on the phone to the hospital asking what I should do in the event my water leakage should occur eight weeks early.

 

The response was to not go to them, but to go to the bigger hospital in the next town.  As it turns out they couldn't deal with me either and we got whisked off to a hospital over an hour away.  After monitoring, steroid injections and vast amounts of prodding and poking, I was admitted.

 

My first baby.  Ignorance was bliss.  I learned that quickly; the first steroid injection in the thigh you let them do, the second one you are more reluctant about.  When they go to give you a third you run screaming telling them you really have had the second one already!  Maybe I should have had more sense and kept a record of everything from that point.  But there are a lot of 'What If's' I could spend a whole lifetime debating so I have learned to just accept; I didn't.

 

Any reader of this blog will know the resulting consequences of my birth story.  My eldest son has quadripelgic Cerebral Palsy.  The brain damage he suffered, according the the MRI, happened in the last hour of the birth.  Apparently it is no ones fault.

 

Bad Luck.

 

That is the professional opinion.

 

So, for eleven years we have watched my boy live with this condition.  We have learned to support him and care for him to the very best of our ability.  We have watched him suffer as he recovered from operations needed as a consequence of not being able to walk.  We have watched him grow frustrated as he discovers he can not do a lot of things that his siblings can.  We have, I particularly, felt inadequate as a parent as I fail to get councils / governing bodies / professionals to listen.

 

It is easy to feel overwhelming negative. 

 

Until I have a conversation with him.  Yes, have a conversation with him.  I can hold a conversation with my little boy.  That was something I didn't know I would ever be able to do.  He didn't speak until he was five.  Now he talks, and shouts and sings, beautifully out of tune (a trait he most certainly gets from his mother!)

 

He tells me it is his birthday on Thursday.  He is going to be eleven.  He would like an Ipad.  He thinks he is going to get one.  He has got a flake cake to take into class.  He then tells me the name of his class; who his teacher is and who his best friend at school is.

 

I marvel. 

 

He is a miracle.  Saved in an age of technology.  Afflicted by bad luck but sticking his two fingers up to it's consequences. 

 

He has a lot of issues to contend with, in truth we all do.  Disability makes life extra hard work for everyone involved but he does it with a smile - well for the most part - we are gradually seeing more 'teenager' starting to creep in (but how great is that!).

 

So another year has crept by, I write this blog as I write one every year celebrating his growth and tenacity.  Celebrating the fact he is here, with us, to smile, laugh and give us attitude.  I thank my body for holding him in until just eight weeks before he was due to be born.  I thank the nurse who stuck a steroid injection in my thigh and backside.  I thank my son for being a stubborn and determined little man every single day.

 

Eleven whole years of being the luckiest mum ever.

 

Birthday Time.

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.