There is this programme on the TV about parents with disabled kids, how they cope, what they do, whether they terminate the pregnancy etc.
The termination was never an option with Jermaine and Zoey as there was no test available for what they had. That aside, this morning was the first time I had ever considered that as an option.
I am not normally a one for saying ‘what if?’ but sometimes it is called for, time to evaluate decisions.
Quite possibly I am not selfish often enough, I look at the right or, more commonly, logical thing to do and rarely just what my heart tells me to do. If there had been a test for the kids all those years ago I know I would have decided to keep them but for the wrong reasons. It wouldn’t have been because they had a right to live or that I was particularly skilled to cope with a person who has a disability. No, it would have been because they are mine and no one was going to take something away from me. In my mind somewhere I know was the thought that this disability would have given me an excuse not to be the same as everyone else, to get some extra attention and be special. In effect, my decisions at the time would have had selfish motives so I guess I just disproved myself there, clearly I am and have been very selfish.
This is academic because there were no options to do other than I did at the time anyway. Their condition was not clear until some time after birth and even then I could not have known the extent of Jermaine’s illness and how that would affect him.
Right now it seems to me that I and the kids are the only ones that value Jermaine. I am quite convinced that his mother and grandparents are content to wish him a speedy death so as to end his unpleasant life. You know, and this makes me feel awful, I sometimes wish the same thing too though the thought of him not being somewhere really upsets me.
Being with him and knowing there is only a short window of tolerance with him allowing me to be close to him before he becomes violent, it’s really upsetting as I just want to hug him forever and his smile is priceless. Some of his photos I look at from a few years back and I feel terrible that I was unaware of how he would change and, at the time, I didn’t give him the attention he deserved, I should have hugged him more when he wanted to be hugged, I was always too busy. I wasn’t, of course, I am rarely too busy to do anything physically it is emotionally. My head is just so cluttered with trying to stay one jump ahead of the game, the one I am losing right now I should add, I allow the important bits of just living to pass me by for the greater good and that is rubbish I know but I seem unable to help myself. I don’t know whether it is because I have been surrounded with weaker people that have needed me to take charge or whether it is because I appear to be such a powerful person but I am stuck in this role as the leader and, most of the time, it sucks. I often think to myself that one day I will just die and the only sentiment will be ‘what am I meant to do now?’ from those left behind. I feel like a tool sometimes, well, much of the time. I am really useful and effective at what I do but seldom do I see any sign that anyone considered the work that went into creating me and how fragile I am. There is just one of me and if my lot are anything like I was then they won’t appreciate what I am until I am not. I see the amount of appreciation shown to other people and it physically hurts. On the gaydads list I run and have done for years no sooner does someone offer to arrange a get together than he is praised and made to feel God like. I set the thing up, keep is running, pay for it, promote it and yet, nothing. On this build up to Christmas I am convinced I shall be too tired to enjoy it because without me nothing will happen. Sure ‘they’ will help but not without constant direction. No one is going to say ‘put your feet up and enjoy this one’, they won’t because no one does. It’ll be the same with the holiday, the words I will hear most often won’t be thanks for a great holiday they will be ‘what are we doing now?’
The other night I was having three conversations at the same time. It’s easy for others, they have something to say and they say it but when from three different directions I am being asked different questions on different subjects it very tiring.
It near on 10am and I have been up since 8. The girls went to school OK but no one else is up, they don’t need to be because I am up waiting for the phone, making arrangements, doing things which make others lives easier and, of course, it isn’t seen or acknowledged because they don’t have to do it so it doesn’t happen.
As both mother and father here I am nearly always the bad guy to someone at any given time. Hell, I really feel they begrudge doing anything for me. As far as I am aware, and I would like to be wrong. Matt has spent less on my Christmas gift than he would spend on one nights drinking with his mates. Daisy was complaining because I said I couldn’t afford to subsidise her getting a part time job for pocket money. John is really quite generous, it has to be said. He keeps less than £10 a week from his money for himself and that was totally his own idea. He does offer to make drinks and cook dinner and clean yet, do I really show my gratitude to him? I think I probably don’t. I don’t because I feel so knackered, so used so abused that I just don’t have the enthusiasm to do it properly. I don’t really feel depressed, that’s too strong, I just feel exhausted.
Rain, I hate rain … I need sunshine, brightness and the time to enjoy it. That was random, just slipped out that comment.
Oh yes, after reading Nick’s blog I have to say, he did look cool in his suit, cost way more than I’d have spent on one evening with a bunch of virtual strangers but if it makes him happy then that’s what matters.
Danny seems to have disappeared off the planet. No one seems to have had contact from him since Mary Ann died, I guess he must have chosen to move on and live his
I am upset about my decision not to go to the NYE party at Ian & Richards, not least because there are so many people going to be there that I have not seen in an age but it is the right decision not just because I need to save money but because I really don’t trust my luck, I feel something terrible will happen so don’t want to take the risk.
PS … I have to drive my battered car to Autoglass, they won’t come here because it is raining so I have to drive this unsafe heap of shite … why do I even bother with cars and insurance when it all just costs me what I don’t have?