Happy Birthday Jack

Thirteen years ago today, Jack was born.  He is officially a teenager as of 10.22am .  I can't believe it, he has come so far.

Little did I know when I was carrying him, how much my world was going to change with his arrival. And boy did he take his time to arrive!  He was reluctant to come out even with lots of encouragement from the midwife. I had been in hospital for 4 days with nothing happening. The morning he was born I was due to be induced at 9am.  I was really not looking forward to it as I have a terror of needles and drips....eeek!  So I was sitting by the window, staring out into the sunshine, in a wee world of my own, trying not to panic about it when suddenly, out the corner of my eye, I saw a hand coming towards me out of nowhere.  I just about leapt my own height, screeched and was clutching my chest with fright.  It turned out to be nothing scary, just an auxiliary who had come over to see if I was ok.

As she was apologising profusely I was overcome with the most horrendous pain, had to be helped to my bed  and was having another one before I got there.  She gave me such a fright I'd gone into labour! That was at 8.30am and he was born less than 2 hours later.  She felt really bad but I was laughing and really grateful to her cos I had managed to avoid the dreaded needles.

The ex wanted to give him a really Scottish name like Angus or Hamish but I wasn't keen so we gave Holly the deciding vote.  She went with my name and I could have done a wee dance around the ward!  It had nothing to do with the fact that I had been telling her for weeks how much I liked that name (wink wink) and anyway, Jack is more often than not the name of the hero in stories, movies etc.  He was well named.

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In his 13 years Jack has endured two years of constant pain followed by brain surgery at the age of 3 and a half. He has been on a wheat and dairy free diet short term and has had so many tests, bloods taken, scans, x rays and he has been prodded and poked at by so many doctors that by the age of 5 he used to scream any time someone in white approached him. He has been hospitalised with seizures more times than I can now count and each time he comes out of hospital, he loses another skill and by the time he was 8, he was struggling to eat and drink.

He was always on the go, running, climbing, always wanting to be outside.  He never slept and was up most of the night.  I used to have to sleep in his room as he could get out of the bed and as he had no sense of danger he couldn't be left alone. I nicknamed him Houdini at that time cos you just couldn't keep him in!

He would have been able to get out of this!!!

His seizures were horrendous.  No two were the same and he had from 40 to a 100 a day to begin with.  When they were happening every two mins, seconds apart he was usually rushed to hospital.  We have been in every major hospital in Scotland.  Many times we were away from home for up to 6 weeks and I found this very hard as it meant leaving Holly behind but often I would just take her out of school as she was still young, homework in tow so that she didn't fall behind.

He has been on the Ketogenic Diet which is very similar to the Atkins diet where he ate loads of fat and very little protien and carbs. This was to help with the seizures.  I had to test his ketones twice a day to make sure that he was ketonic.  Everything had to be weighed and measured and he had to eat everything, down to the very last drop otherwise it didn't work.  This meant he had to eat 4 meals a day and I spent a hell of a lot of time cooking. He was on this diet for 9 months.  It didn't affect his seizures at all but it did make him a bit brighter.  He had a feeding tube fitted too, as a back up as he was struggling to eat at times.  They said it was temporary but it never came out again.

3 years ago

Five years ago, he spent half of March and April in hospital with seizures and again in May and June.  My mum died 2 weeks after he came out of the hospital in June.  She adored him. Shortly after that he stopped being able to walk.

Two years ago he had a Vagus Nerve Stimulator fitted.  A month later he had an x ray which showed that his swallowing had become unsafe and I actually saw the food going into his lungs.  I was devastated!  He loved his food, it was one of his few pleasures and now it was gone.

At the same time, his chest then became a problem.  The more seizures he has, the more saliva he produces, which he then swallows and half of it goes into his lungs causing infection.  A child like Jack, can die from a chest infection. He has been on so many medications over the years that I am sure he rattles at times.

Despite all of this, Jack has been a ray of sunshine in my life.  He is such a beautiful child, inside and out and everyone who knows him just adores him.  A smile from Jack can brighten the darkest day. He never gives up, always trying to get up again when another seizure or chest infection has floored him. He has such a determination that he astounds me at times and he never accepts his limitations. He can't speak but he says so much with his eyes and body language and he knows that he is so well loved that he has to fight off my kisses at times. Bad mum!  He is the bravest person I know and in my eyes he is my hero.

Birthday boy today

So Happy 13th Birthday Jackyboy.  I hope you've had a great day.