Finally things change but it’s too little and too late

The past couple of days I have started having district nurses asking my advice on what insulin to give Jermaine, this has never happened before. It’s how it should be but why the years of it not happening before?

Took Jermaine to the hospital today for a final appointment to see his epilepsy and diabetes consultants, John and Chris. We all agreed that the increased assessment period at the Chalfont had more to do with the tax year then it does with needing extra time to assess anything. Chris is also going to write that he feels the Chalfont is the best place so that is two senior consultants saying he should be there. If the Chalfont agree then the PCT don’t have a leg to stand on.

I guess it is worth doing a little bit about Jermaine.

He was born a healthy bright young thing and had a normal development until he was 11 months old. He used to always be smiling and saying little words then, over the space of a couple of weeks, he lost everything.

Over the following years he developed very slowly and by the time he was 8 he was talking just a little again and always smiling and happy, a real joy to be around. We knew there was something wrong with him his mother and me and we had him in a special needs school but family refused to acknowledge the problem saying that he’d just snap out of it, you know, denial and all that stuff which made them feel better but didn’t do anything for us or Jermaine.

Life went on and we moved to Northampton, by 15 the seizures had started and this marked the start of a downward spiral

Me and his mum divorced in 2000 but she had moved out by then and I brought up the kids with the help of my then partner Nick who was lucky enough not to really have known Jermaine as a younger child. This is what Jermaine looked like just 5 years ago

This is the last normal looking picture we have but already by the time this had been taken in July 2003 he had become very violent and generally difficult to manage.

Seizures got much worse, diabetes became epilepsy combined and various medication were tried that made his behaviour even worse. By 2005 things were getting quite desperate, Jermaine had long since stopped being the child I know, the son I adored.

This is what he looks like now, these pictures taken in October 2005

It was during October 2005 that I finally had to concede defeat. It was obvious I was never going to get the support I needed. My relationship with Nick was over, Jermaine’s mum had disowned him in the January, there really was no one to cover me in an emergency and I couldn’t allow that to happen.

I took the decision then to have Jermaine in full time residential care, to let my little boy go. If I am honest, my little boy went years ago, what is left is a shadow of what used to be and that is the most upsetting part, letting go of that final piece. I am pleased in many ways that so few of my friends have any idea what he used to be like. I do sometimes show them a small video of him when he was 8 and he just doesn’t seem like the same person.

Bye bye son.

I so needed to write that as I am now crying my eyes out and I feel just a little better, it just hurts so much, no one should have to give up, lose their child like this.

Finally things change but it’s too little and too late

The past couple of days I have started having district nurses asking my advice on what insulin to give Jermaine, this has never happened before. It’s how it should be but why the years of it not happening before?

Took Jermaine to the hospital today for a final appointment to see his epilepsy and diabetes consultants, John and Chris. We all agreed that the increased assessment period at the Chalfont had more to do with the tax year then it does with needing extra time to assess anything. Chris is also going to write that he feels the Chalfont is the best place so that is two senior consultants saying he should be there. If the Chalfont agree then the PCT don’t have a leg to stand on.

I guess it is worth doing a little bit about Jermaine.

He was born a healthy bright young thing and had a normal development until he was 11 months old. He used to always be smiling and saying little words then, over the space of a couple of weeks, he lost everything.

Over the following years he developed very slowly and by the time he was 8 he was talking just a little again and always smiling and happy, a real joy to be around. We knew there was something wrong with him his mother and me and we had him in a special needs school but family refused to acknowledge the problem saying that he’d just snap out of it, you know, denial and all that stuff which made them feel better but didn’t do anything for us or Jermaine.

Life went on and we moved to Northampton, by 15 the seizures had started and this marked the start of a downward spiral

Me and his mum divorced in 2000 but she had moved out by then and I brought up the kids with the help of my then partner Nick who was lucky enough not to really have known Jermaine as a younger child. This is what Jermaine looked like just 5 years ago

This is the last normal looking picture we have but already by the time this had been taken in July 2003 he had become very violent and generally difficult to manage.

Seizures got much worse, diabetes became epilepsy combined and various medication were tried that made his behaviour even worse. By 2005 things were getting quite desperate, Jermaine had long since stopped being the child I know, the son I adored.

This is what he looks like now, these pictures taken in October 2005

It was during October 2005 that I finally had to concede defeat. It was obvious I was never going to get the support I needed. My relationship with Nick was over, Jermaine’s mum had disowned him in the January, there really was no one to cover me in an emergency and I couldn’t allow that to happen.

I took the decision then to have Jermaine in full time residential care, to let my little boy go. If I am honest, my little boy went years ago, what is left is a shadow of what used to be and that is the most upsetting part, letting go of that final piece. I am pleased in many ways that so few of my friends have any idea what he used to be like. I do sometimes show them a small video of him when he was 8 and he just doesn’t seem like the same person.

Bye bye son.

I so needed to write that as I am now crying my eyes out and I feel just a little better, it just hurts so much, no one should have to give up, lose their child like this.

I had a really enjoyable time in Meltham with Stan and Pete, even that walk against the wind up the pub on Saturday evening in a blizzard was fun.

On the way there I thought it’d be fun to take some pictures of the car in the snow. I had not realised just how windy it was, I seriously thought my door was stuck when I tried to open it but it was just being pressurised by the forces outside. I am lucky really the wind had not been behind me else the door would have been ripped off.

On the way back on Sunday I paid a visit to Sue in Sheffield. I like Sue and she is a great conversationalist. The journey was not without incident as the satnav kept failing and crashing and just became useless. I eventually tracked the problem down to the loudspeaker connection for the mount and once I’d removed that it was stable and guided me well to Sue’s door.

I am really happy to report that the steroid injection I had last week as helped ease my pain. I still have the pain but it is not restricting me anymore, it’s a shame that it will most likely go back to how it was again in a few weeks.

This morning I awoke with a sudden realisation that once again I was being a control freak arsehole! On top of that was being a hypocrite and lying to myself as well. I had made it clear to Martyn “don’t worry about my feelings for you, they are my problem” and “I know I am a control freak and I hate it and I don’t want to do it” and this is the reality:

“OK, I will allow you to go out and have some fun if you want but don’t tell me about it, don’t snog a guy in front of me, don’t even let me think you are seeing anyone else, don’t do what you want to do because it will upset me and I can’t allow that!”

I mean, what a complete and total idiot I am. I am mostly annoyed with myself for not noticing what I was doing sooner. I felt there was something not right about the situation but couldn’t work out what and that’s it. I was controlling the situation and making it Martyn’s problem.

So, what I can do now is apologise to Martyn and suggest he just ignore me and do what he feels he wants to do as he probably should be doing and certainly what he has the right to be doing. What I don’t have the right to do is to be told he wants to be single and then manipulate a situation to make it look like he is my boyfriend … shame on me …. I need a slapped bottom so please form an orderly queue.

I had a really enjoyable time in Meltham with Stan and Pete, even that walk against the wind up the pub on Saturday evening in a blizzard was fun.

On the way there I thought it’d be fun to take some pictures of the car in the snow. I had not realised just how windy it was, I seriously thought my door was stuck when I tried to open it but it was just being pressurised by the forces outside. I am lucky really the wind had not been behind me else the door would have been ripped off.

On the way back on Sunday I paid a visit to Sue in Sheffield. I like Sue and she is a great conversationalist. The journey was not without incident as the satnav kept failing and crashing and just became useless. I eventually tracked the problem down to the loudspeaker connection for the mount and once I’d removed that it was stable and guided me well to Sue’s door.

I am really happy to report that the steroid injection I had last week as helped ease my pain. I still have the pain but it is not restricting me anymore, it’s a shame that it will most likely go back to how it was again in a few weeks.

This morning I awoke with a sudden realisation that once again I was being a control freak arsehole! On top of that was being a hypocrite and lying to myself as well. I had made it clear to Martyn “don’t worry about my feelings for you, they are my problem” and “I know I am a control freak and I hate it and I don’t want to do it” and this is the reality:

“OK, I will allow you to go out and have some fun if you want but don’t tell me about it, don’t snog a guy in front of me, don’t even let me think you are seeing anyone else, don’t do what you want to do because it will upset me and I can’t allow that!”

I mean, what a complete and total idiot I am. I am mostly annoyed with myself for not noticing what I was doing sooner. I felt there was something not right about the situation but couldn’t work out what and that’s it. I was controlling the situation and making it Martyn’s problem.

So, what I can do now is apologise to Martyn and suggest he just ignore me and do what he feels he wants to do as he probably should be doing and certainly what he has the right to be doing. What I don’t have the right to do is to be told he wants to be single and then manipulate a situation to make it look like he is my boyfriend … shame on me …. I need a slapped bottom so please form an orderly queue.