HWA

Another good visit with Zoey earlier. Took her iPod into her, had to lend her my skull candy headphones. Also I drove to Milton Keynes and collected an IKEA catalogue for her to look at.

She got even happier when Dennis came online. It’s annoying that it’s near impossible to use Skype video on a phone but, better than nothing.

With the continence we’re having maybe one accident a day now and Zoey is making an effort to get to the toilet but not quite getting there, I think she’s still feeling the after effects of the UTI she had.

She’s still not talking but I think that will change when she leaves. Cleanliness is still a slight issue but she’s getting there.

What worries us is that they are still referring to her being there in months time. We’re thinking more a week or so. The reality is, the issues she went into hospital with are now resolved. We need tweaks on the hygiene and continence but I am still quietly optimistic about those happening soon. But, will they recognise where the mental health issues have stopped and what they are left with is ordinary learning disabilities Zoey? We’ve got this fear that she could spend the rest of her life in an institution because they are not well enough experienced with LD to see that LD is the only issue.

Look, I don’t want to be overly optimistic here so let’s be cautiously optimistic.

I had a really good visit with Zoey last night, a real turning point I thought.

We had some serious interaction and for the first time she said she wanted to come home. She didn’t just say it she really said it then hugged me sobbing for around 10 minutes.

There was a worrying aspect to the visit though. Zoey isn’t really talking except when she gets really emotional. I felt she wanted to talk but that she was stopping herself. Rather than tell or ask her to speak I did a series of questions with nod or shake head answers. I am going to simplify what went on for about 15 minutes. In a nutshell she was scared and said that someone there has told her she isn’t allowed to talk. I was getting to the who when she couldn’t answer any more and got very upset. She certainly gave me the impression she was scared. Obviously that’s worrying and I did report it to a staff member. I intend to do so again to a higher level staff member.

Today was another mostly good visit, certainly between me, Sean & Zoey. Annoyingly we became aware that once again no one was watching Zoey or taking an interest in her needs. I discovered she was still in pads despite being told they wouldn’t be used any more. Further, I noticed that the pad seemed to have leaked. I asked Zoey if she was comfortable like that and in a very relaxed way she said she wasn’t and we went to her room so she could use the toilet. Imagine my despair when I discovered she didn’t have a change of clothes there!

Zoey was quite upset because she obviously did want to use the toilet but couldn’t.

I asked staff members until I eventually found someone who’d check the laundry, we discovered some of the clothes but a significant amount had gone missing.

What followed was an unpleasant confrontation with the head nurse. This nurse was trying to tell me that sometimes mistakes are made and it’s not unacceptable, I told her quite bluntly it was always unacceptable. She said that just because they didn’t check Zoey or look after her clothes or make sure she could use the toilet, that didn’t mean that hadn’t achieved anything. I retaliated with the fact that I’d never for one moment connected any such thing. I’d merely pointed out that our priority area of concern right now was Zoey using the toilet and not wearing pads and asked why it was so difficult to concentrate on that one task, how comes they couldn’t recognise in hours what we’d discovered in minutes? There was no answer, just a shrug.

So, complaint again tomorrow and I am so getting sick of complaining all the time. I should be able to relax knowing my daughter is somewhere safe and being cared for properly.

The sooner we can get her home the better.

I obviously had to replace the clothes, that’s £112 it cost me, money I don’t really have as the government has taken away my income of course because Zoey is in hospital and, when someone is in hospital, no one at home can legally be caring for her!

Nothing has really changed.

Ironically, the two things we’re waiting to get resolved are both things which were not an issue when she went into hospital!

Legally she’s on a Section 3, for those who don’t know, this means that until such time as she has improved she is imprisoned for her own good for 6 months and then indefinitely subject to reviews.

It’s not a nice thought but it is the reality. If she gets better then she can be sent home. Right now I just don’t know ‘if’ she will get better. They know she needs speech therapy and continence advice, there is a significant waiting list for both. So, in the meantime, they’re just hoping the situation sorts itself out as they are not really doing anything except babysitting from what I’ve seen.

Social Services have apparently allocated her a new key worker to assess her needs and place together a revised home package, they have so far not managed to contact me with this information though.

I’ve effectively been a single parent now for 16 years. I’ve had partners in that time but, rest assured, the responsibility and emotions remained mine.

Raising kids is always tough, fun and rewarding but not easy.

I feel like I made a lot of mistakes, I mean, way too many I probably had no right to make.

I took too many holidays without the children. I considered they were well looked after but, in hindsight, that probably wasn’t true.

Whatever caused Jermaine’s issues, I don’t think I dealt with it well enough, I don’t think I got the balance right between his needs and the needs of the other kids. I decided way after the event that he needed to go into a care home and even then I went with the wrong care home and he had to wait months for me to get it right whilst being neglected and abused because of that in the meantime.

Of course two of the kids would rebel, go off, make mistakes and, of course I was totally oblivious to it. I was so smug that I’d done a good job of raising them I couldn’t even in my wildest dreams imagine I could have caused so much damage to them that they’d get themselves into some of the bother they got themselves into. I can’t blame them for that, it was my responsibility to lead them down the right path and I failed in that.

Since that started falling apart, with the Javis situation, money issues and so on, I feel like I have just stumbled from one cocked up bit of parenting after another. I mean well, I think I am doing the right thing for the right reasons but, it doesn’t seem to make any difference.

I’ve got to ask myself, am I doing it as a parent trying to actually get it right for a change or, am I doing it because I have some strange fantasy ideal of the ever loved parent who is always loved and admired no matter what? Looking for that perfect supportive family who won’t have negative feelings toward one another as time runs along? I don’t know if I am honest!

I spent too much of my younger life, as a kid and well into my 30’s looking for approval, someone to tell me I was getting life right, achieving, that I was respected and liked. More often than not, the opposite was true.

There was a lot of rejection, I considered myself, because this was how I was treated, very much the black sheep of the family. The outsider, the different one.

When Mum died, nearly 30 years ago now I was a mess and I had to cope and get on with it because I did. Hell, it effectively rendered me homeless, I was 3 weeks away from getting married, a child on the way, working in London, dealing with all the ‘death’ stuff and, being made totally aware that I really wasn’t that important, that really it was all about my Nan and, in a way, I got that, I do and did but, it was like that because for this one situation, two sides of my family couldn’t put my difference aside and get along, just for one day. That was maybe the first time I really got just how unimportant I was as an individual. Until then I had just existed as part of a package, I was in the lives of others because my mum existed, once she didn’t then I stopped mattering to anyone, that was quite tough.

Ever more apparent at the time was the fact that I was gay. I felt getting married was a huge mistake. I felt OK about it when mum was about but once I had to stand on my own I suddenly realised that perhaps I should have been making choices for me because no one else gave a damn anyway.

Too late, I got married anyway and I tried really hard to make that work. I did too for some 14 years, that’s quite good by any standards. I didn’t bank on two disabled children though.

Losing Jermaine at just short of a year from a normal little boy into a kid with very real problems was tough and, of course, instead of being supportive, family either rejected the idea that there was a problem at all or they decided that somehow I was to blame for it or their mum was which made me to blame anyway because clearly I must have allowed the situation!

I felt totally humiliated having first Jermaine and then Matt on the ‘at risk register’ because I’d stupidly gone to work leaving them in the care of their mother and not getting home quick enough to stop a situation!

Oh, that job, made my life hell for having to keep going home to care for my own kids, I lost it eventually. Not before I went through months of abuse and bullying there.

After mum died I didn’t get to hold to much, actually, I got a necklace of hers, I wore it most places. One of the few times I didn’t the house was burgled and it was stolen. I know it wasn’t how it was but it felt as though someone knew what it meant to me and took it just to spite me.

One one occasion, after mum died, my dad asked me what my issue was with his wife. I told him that she’d gone out of her way to screw up my mums life, that she’d screwed up my wedding by her selfishness and that there was probably part of her who would like to see nothing more than total domination in his life by her and her daughters. I was punched and thrown out his house and told that I was a complete failure in his eyes, I’d never amounted to anything and never would.

That hurt but, I knew it anyway.

When I realised instinctively that there was also an issue with Zoey at 6 months I cried so much whilst cuddling her in her room.

I spent most of the first 10 years of marriage feeling terribly isolated. Family, blood family had all but rejected me, I was an in law to my wife’s family. They were lovely enough but bottom line was that I was a man with no real idea how to deal with children whilst I knew I was the one who did the majority with them.

After that decade I came out to that side of the family, not my own, it didn’t matter to them. They didn’t care anyway what I did or who I was. 3 years later I started balancing being gay with raising the kids. In 2000 I took over totally with the kids. My wife suggested Jermaine and Zoey go into care as I’d not be able to cope.

I did cope for another 5 years with Jermaine but I left it too late, the damage to the other kids was already huge. I’d done my best for one I could make no difference to and not done enough for the others.

Letting Matt go when I did will always be a low point in my life. He was like he was because of my decisions.

The lies and deception which lead to the Javis situation I also must take the blame for. What sort of parent raises their kids to lie to them about something so important? If I’d been there enough then perhaps I’d have had more respect shown me?

Even then I tried to make things right by making them more wrong. I invested too much time and energy in the scumbag which I should have put into my own kids. That mistake cost me dearly emotionally and physically and in over £2500 of loss!

One of the classics of the modern era, the last 7 years or so has been the shit which got spread about me, lies of course but enough people got to hear it to believe it and, as everyone ‘knows’, there can be no smoke without fire! So many, too many people now ‘know’ the sort of guy I am and yet they don’t know me at all, it’s a horrible feeling knowing others gossip such horrible untruths and nothing can be done about it.

I have been called a ‘dick’. ‘Bell end’, selfish money grabbing bastard’ and a great many more so many times I lost count, it hurts every single time because it isn’t true.

Then there are the friend, the friends I would do anything for, who I’d drop everything for who blanked me when I asked for help, people I thought would understand. That actually hurt loads because, well, because they did understand and chose to do nothing, it hurt all the more.

Getting cheated on by someone I cared deeply about and more than once, that made me feel stupidly low, it also made me vulnerable and cost me a lot of money whilst someone else manipulated the situation to their own advantage.

Losing my best friend Tony to cancer was awful. That man completely turned my life around. He was totally my rock, my one constant, I felt so alone afterwards.

Up to date and I feel guilty still for not visiting Jermaine more often. I should, I know I should but, at the same time, I can’t really deal with it. I feel so helpless to help.

I met a guy online a few years back, I thought it was all real, I sent money, I went visited, I sent more money, I got into a lot of debt I am still not quite out of and he turned out to be no good, was just using me for the money.

There was that, the cheating ex husband, the manipulating Javis, the charity which totally humiliated me when they realised they’d made a mistake allowing a volunteer so much influence and many more such things. Fair to say, I’ve got trust issues!

4 months ago I met Dennis online. So many people think it’s a joke, they say distance relationships are not serious that, because I got ripped off before it’s all going to happen again and so on.

In my heart I know this isn’t true. I do love Dennis and trust him totally. He’s never given me any reason not to and I am sure he never would. I hate that each time we cannot talk or we get online late (which happens rarely), there is a voice in me asking whether he doesn’t really love me or not! I really hate that because I know it’s not true, I hate that insecurity caused by other people in me.

Now I have no idea what is happening with Zoey, there seems to be no cause but I’ve all but lost her. She was in my care but now she’s on a section 3, held against her will in a secure hospital. It’s obvious all those inside there are pointing the finger at me, I know some people quite close by are pointing the finger at me that, somehow I have created this. I keep asking myself the same question, what did I do wrong?

One of my children is in that place on their own when I should have been there for her. She’s hurting and I am no use.

I’ve lost all my benefits now, virtually nothing coming in. I should think about working but I don’t want to accept that it’s a done deal with Zoey, I need to think she’s going to get better. I cry maybe too much trying to work it all out, I pray so much and I know others do too.

Just a few months back the future looked so promising and yet now I feel I got to really fight for it and even then, my dreams might not come true.

To add to my feelings of isolation, Sean’s sister is about to die, I feel he’s handling it in a way which is going to make it really difficult for him to cope afterwards but, trying to help is causing arguments. In the meantime, Daisy is taking the brunt of my frustrations and anger and she is struggling to cope unsupported too, what a mess!

I notice Sean’s sister has one of the crowd funding things set up for her, I remember ‘Walter Jnr’ from ‘Breaking Bad’ setting one up for his dad with his cancer.

My money is gone, I’m in debt. I need to get things back on track and soon, actually, I need about £70,000 to make my money worries go away https://www.gofundme.com anyone? No, I don’t suppose anyone would either set it up or donate to it.

I’m one of those guys who is only useful when they’re useful and disposable otherwise.

I’ve got some great and very real friends but, I am also one of those guys who doesn’t like being a burden on someone else!

I know, I am the cause of my own issues just so much of the time.

Anyway, an open prayer:

Please help my Zoey get back to her old self. I need to try and get things right for her.

Please help Sean get through his issues, help him to cope the right way through one his toughest times so far

Please help Anne as I know she’s struggling and help Matt too because he’s as dumb as me and will bottle shit up for way too long.

Help Daisy please with her almost constant pain and her piggy in the middle situation.

Please take Kelly soon and remove her pain from her.

Please also help Chris get to do some of those things he dreams of.

Please, if me and Dennis are meant to be together, help me find a way without causing me so much stress I’ve got no energy to enjoy it.

Please, look after all those and bless them the ones who say prayers for me