Tuesday, 3 September 2013

His first milestone....

After being told a list of what J-P might not achieve I had thought nothing more about his milestones.

He had intensive physio whilst we were in the hospital - his Cardiologist didn't know how long we'd be in hospital for so he wanted to make sure that J-P had as much interaction and help as possible.  They helped him open his hands which were tightly closed.  They blossomed like little flowers - you tickled the back of his hands and they opened so delicately, it was a beautiful sight.

It was on a night just before Christmas 2011 when we had been transferred back to our local hospital that J-P was to surprise us all.  At night time I would place him on my pull down bed, and get the fibre optic lights out for him to 'play' with.  He would look so intently at them, it was so nice to see him really focusing on something.

It was on this pull down bed that my baby rolled from his left side to his right.  That was my early Christmas present.

Many people who have "normal" children won't understand the sense of pride and rush of love I felt for my baby that night.  I was so proud that he'd decided to do that all by himself.  That little brain of his had said, 'I want a different view today and I want to do it for myself.'  After this he did it all the time.  He was 7 months old and rolling from side to side.  Would he roll over?  That was up to my little Mister....

Wednesday, 28 August 2013

What they told us....

John-Paul's Neurologist said to me recently "we gave you such bad news continuously for such a long period of time.  We all wondered how you weren't all collapsed in a heap."

What she's referring too is that over those 9 months in hospital, something always seemed to happen.  He'd get through his heart surgery and then catch an infection.  He'd have a great couple of days tolerating feeds....and then have a seizure.  Life was constantly up and down.  I used to put my head down for sleep at night and hope that things would be ok in the morning.  You could never go to sleep with a peace of mind that J-P wouldn't be taken suddenly and seriously very ill.  There was no planning allowed with Mr J-P!

One of the days I'll never forget was the day we had the results from his MRI scan.  It was just me and my Mum as it often was, with my Dad looking after the family at home.Dr Philips sat us down and told us that J-P did not have what they'd call a 'normal' MRI.  He had several absnormalities and due to these we should expect him not to walk, talk, sit unaided, roll.  His vision and hearing were very definitely impaired due to the connections in the brain and this would prevent his speech developing also.

But the Doctor then gave me a wonderful dose of hope.  HIs exact words to me were (I remember them so well, I will never ever forget them)
"I've seen thousands and thousands of MRI scans.  Some children have 'normal' MRI's and yet can achieve nothing.  Some have MRI's far worse than your son's and yet they can do everything.  The human brain is an amazing thing and it will sometimes find new ways to achieve things.  So I won't ever say to you that he definitely won't do anything but just be prepared that it's a possibility."
On hearing those words Dr Philips gave me a wonderful gift.  The gift of being able to cope with that news.  He didn't even know what an amazing thing he'd done.

I'd decided from that moment on that I should have in my mind that John-Paul might not be able to do anything but to never EVER give up on him.  I was worried for him, that he'd be aware that he couldn't do things but with Dr Philip's words I'd decided I would be his greatest ambassador, I'd be behind him all the way.  If John-Paul wanted to do anything I'd be righ there doing it with him.  ANYTHING - even the slightest milestone would be a miracle and I'd take that and enjoy every second.

Wednesday, 14 August 2013

Hospital as home

After we had taken Mister J-P into hospital that first time, just for a check.....we didn't come out again until 9 months later.

Mister had heart surgery, stomach surgery, huge seizures that nearly took him....and infection after infection.  I watched J-P go through things that most people will never have to go through.  All in the first 9 months of his life.  Tubes, wires, monitors all became normal.

Hospital life became normal life.  I got used to the routine, I got used to the charts, the constant noise, the buzz, I even got used to the staff rotas! It all became home.  People will often ask how I managed to cope being in hospital for that long and the truth is it was easy.  I had a solid family unit and amazing hospital staff around me.

My Mum would stay with us.  She'd make sure I was eating, make sure I was getting fresh air...she'd even do my laundry.  Dad remained at home and came up when he could.  He would cook food and bring it up to us, he'd feed and walk the dog and he'd take care of my niece after school.  We had formed a formidable team.

The staff pretty much left us to it.  They monitored and stepped in when real specialist care was needed but for the most part I kept a constant vigil by my baby bird's side. 

The truth is I came to call that home so much that when they started to discuss going 'home' the idea petrified.  I didn't want to leave.  I had found a new normal, I had found a home with my boy and I didn't want to give that up.

Tuesday, 13 August 2013

My birthday

Today is my birthday.  My first one without my little soldier.  I always knew it would be a difficult day but I didn't quite realise just how difficult.

Birthdays are supposed to be a celebration of being alive.  That you're another year older.  This year mine serves as a reminder that I can no longer spend mine with my baby boy and that I won't be able to spend his birthdays with him either.  I know he is with me always, as everyone keeps telling me but right now he's not in my arms and that would be the best birthday present I could ever wish for.  One more cuddle, one more giggle, one more smell of his hair.......

Wednesday, 7 August 2013

Our first steps

Anybody that is or has been a Mum will tell you those first few precious hours with your newborn are the most unexplainable.  They are dreamlike.

You look at them, they look at you.  An invisible bond exists and you know from that moment you will spend the rest of your life loving this tiny little person so completley, far more than you will love yourself.  You see their whole future mapped out in front of them and you always picture perfection.

Straight away myself, his Granny and his Grandad noticed there was something very different about John-Paul.  He cried.  A lot. All day and then sleep all night.  He wasn't feeding, he seemed to be in constant pain and his breathing was so laboured.  I tried to get help for him.  I spent weeks talking to midwives, health visitors, I even took him to the GP who told me he was fine.

I started to believe I was going crazy.  I was having dreams.  Vivid, realistic dreams about my baby boy dying.  It was a hot summers day and he wouldn't wake up.  I knew when my baby cried he was trying to tell me something.  Finally the midwife looked in his notes and noticed they'd 'forgotten to fill in his paediatric assessment'. 

I'd told her for weeks and anyone else that would listen, that I'd found it odd he hadn't been checked by a Paediatrician before leaving the hospital.  They all told me he had and maybe I was asleep when he came around.  I stood over the midwife and watched her ring the hospital.  Who confirmed he had been missed.

Packing up to visit the hospital for the missed assessment, our lives were about to change forever.

Tuesday, 6 August 2013

The beginning of a beautiful fairytale

On 3rd May 2011 I gave birth to a superhero.  I didn't know it at the time.....

I'd named John-Paul months before I met him.  He was named after John Lennon and Paul McCartney.  As soon as I knew I was having a boy, I knew I wanted him to have a Beatles related name.  I've always been a huge fan of The Beatles and so has my Mum and as she was going to be my birth partner I thought it would be a small gesture to honour her.  I'd also already chosen that his middle name would be David after my Dad.  The sweetest man I know with the best sense of humour who adores all of his Grandchildren. 

I had a lovely pregnancy.  I would read for countless hours to J-P.  I read him Peter Pan as I wanted him to have so many adventures growing up.  I wanted him to run around escaping pirates, swimming with mermaids, flying above the trees.  I read him The Velvetine Rabbit too.  I wanted him to know that through love anything is possible and that I would love him and cherish him just like the little boy loved his rabbit.  Sometimes he would stop kicking and I would say in my head 'Come on J-P kick for Mummy, let me know you're ok' and lo and behold he would kick.  We had an incredibly strong bond.

I imagined what the day would be like when I got to meet him.  Would it be incredibly painful?  Would it all be worth it?  Would he look like a J-P?  Would he be a happy baby content in the knowledge that he was surrounded by pure love?  I used to wonder sometimes whether he would ask me about his Dad when he grew up.  What would I tell him?  Would he want to meet him?

The day came for me to meet him and I was nervous.  I was in a lot of pain and suddenly all those breathing excercies that you learn leave your mind.  I remember holding my Mum tightly and saying that I couldn't bear it.  The midwife confirmed that my contractions were very shallow so I'd have to work extra hard.  I focused everything I had on getting him out and getting him out well.  Sure enough my little star burst into the world in just 18 minutes.  I like to think he was as eager to meet me as I was to meet him.  Even if he was 10 days late!