About Me

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I'm a full time carer for my highly disabled mum and step father & my autistic and hyperactive little brother.

Sunday 25 February 2007

Boding Silence

-- The entry below entry has been saved as a draft since the 25th February 2007. I thought I might as well post it. --

I don't consider myself a 'clogger' (one who makes a few blog entries and then stops altogether), the truth is that there has simply been nothing interesting to right about.

You see, I'm almost a full time baby sitter to my sweet little nephew, Dylan (Bink, Binky, Binky Bob, BeelzeBink, Binkelzebob, Bobbles, Mr. Biggles or combinations of those). I have to look after him at night but the thing is I'm an incredibly heavy sleeper. The house next door could blow up and the my reaction might simply be to roll over. So I refuse to go to sleep when I have him. I might wake up when he makes those cute little baby noises; the gasps and the 'false alarms' (when he starts to cry in his sleep but then goes on sleeping) and I might do this for an hour, more or less, and then the last time I'll reach the pillow and stay there and mum (who isn't very well, anyway) will come to see to him if he goes on crying for a prolonged period of time.

On a weekday I'll have him until about 10am, more or less, because everybody will either be at work or at school or, in mum's case, won't get back from taking Chug to school until sometime between 10am and 12pm. So me and young Bink spend a good deal of quality time together; I get to spend most of my days (nights) without anybody asking me to do stuff, which is a blessing.

He'll generally wake up between 3am and 6am because of discomfort in his nappy but he won't let you change it or stop screaming until he's given a bottle. Don't get me wrong; he's one of the happiest, sweetest and most loving babies I have ever met, always laughing, giggling and instantly warm affectionate to just about everybody. He just get's very impatient when he doesn't get his bottle as soon as he wakes up.

Today was somewhat anomalous, though; he woke up happy and smiling and practising his oral sounds (little 'ahhh's', 'oooh's' and 'ahgoo's' and continued happily in this manner for 15 to 30 minutes until I could stand his cuteness no longer and picked him up for a cuddle. He watched Avatar from my lap with me and Chuggle but kept diving forwards to Chug, who was lying in front of us, until I gently lowered him until Chug, where he most happily cuddled and wrestled his 11 year old uncle (it was his birthday, yesterday).

The flip side is that, unless I'm watching films or DVDs with Dave I have nobody to talk to until bink wakes up... And try as he might; he just isn't the conversationalist he thinks he is. (The baby, not Dave. Dave can be a great conversationalist when he wants to be; we'll sit up and discuss all kinds of things, but he's addicted to TV and movies. I don't mind watching movies but I can't handle many more than 5 a week at a stretch).

So my 'free' nights are largely spent playing World of Warcraft and trying to figure out the best times to have me 3 meals a day in conjuncture with the time I get up and when I estimate I'll go to bed.

Saterday was Chug's Birthday so I stayed up through the day until about 6pm. I took him to play some LAN battles of some starwars RTS and the latest expansion of battle for middle earth.

I also got him a new office chair to replace his miniature typist's chair which, apart from £10 from his dad, was his only gift that I'm aware of, since we're having money troubles atm and Mum and Jeff are broke. He's hoping to get 'Hoodwinked' on DVD and the afore mentioned battle for middle earth expansion. We got Pizza on the way home, I ate my share and don't remember what else I did before I went to bed.

I remember feeling awful about the state I was in that day, being so tired and lethargic and I dragged myself through all the things I promised to do, only to cut my time with him short and go to bed.

He spent the rest of the day on his PC playing games in his room, trying to wake me every few hours. I eventually woke up at roughly midnight to find that, once again, nobody had put him to sleep in my absence. That is, if I don't put him to bed nobody else will even try. (They have tried in the past, I guess they gave up on that particular task).

That night was uneventful; the baby woke up some time after the WoW server went down (I don't remember why they took them down) and I took him for some milk (we were all out of the pre-made stuff so I had to mix him some powdered, but I left the kettle on for too long and had to leave it under a running tap for a while). When all of that was done we settled down to watch Mannequin until he fell asleep (he
--I don't remember what the rest of the sentance was suppsed to be, apparently this is where I stopped typing

Friday 16 February 2007

Girl in a Box

Friday was my step-sister's funeral. I began writing this in the small hours of the next day because my sleeping pattern is messed up beyond recognition I went to bed not feeling slightly tired at I-don't-know-what-time, feeling completely restless as I listened for the downstairs clock to chime every 30 minutes. The last chime I remember hearing before I fell asleep was 4am, meaning that I had at least one and a half hours of sleep before I was awoke by my step-dad.

I found a shirt, (I found another shirt when it turned out the first one wasn't big enough for me to put in both of my arms at the same time without squeezing my shoulder blades together and force me to walk around with my arms out-stretched) got dressed in the new suit that I blew all my cash on a couple of weeks ago, got mum to put on my new tie for me and then went back to bed, where I failed to get any more sleep before the time to leave approached.

I changed my nephew's nappy; something I don't mind doing but this morning... having taken off the one he slept in (which he had clearly pee'd in several times and was a hefty weight) he pee'd again. And again. He must have pee'd at least 4 times, although I counted 5, each time failing to hit me (although he managed to get the corner of mum's laptop, I have no idea what the shape of which is now). I made my usual joke, when he made a large amount of waste that I was "surprised there was any baby left".

So when I finished changing his nappy and had him dressed I went to put my coat on when somebody (Jeff, I think) noticed I had managed to get baby cream all over the top of my new suit trousers and part of my jacket. We got most of this out but it's grease based cream and very hard to remove, but we managed to get it to the point where it was only really noticeable if somebody pointed it out.

I don't know what time we set off. An old friend of Tanya's, Kelly, was accompanying us so we took 2 cars; Steve had agreed to drive some of us and Elise would follow mum's car (after mum's chemo yesterday she wasn't feeling well enough to drive), which may have been a mistake because Steve is an erratic and often dangerous driver. Kelly, Chug and I were in his car, mum, Elise and the baby were in mum's.

Steve and I talked quite casually, only occasionally speaking about Tanya or the Funeral. I wandered how Kelly would interpret that as being callous, since was clearly taking things much harder. Then I felt a mild sense of shame that I was thinking about my outward appearance on such a day.

We stopped at a service station just east of Birmingham
because mum needed the toilet. We were hoping to grab a quick breakfast but fate was not in favour of this; I had forgotten my cash card and had to borrow £10 from Steve and most of the food court was shut, opening in 15 minutes which was unacceptable because we were already behind schedule and the one shop in it that was open was highly over-priced and I didn't have enough to feed and quench 4 people. So I got a drink for Chug, mum, Elise and myself, Kelly got her own drink and some food and I think Steve got something, too. I didn't have to break the tenner Steve gave my since I managed to find enough loose change in my pockets to cover it, but I kept it nonetheless in the hope there would be an opportunity to get some food later on.

Unsure at first that we were in the right one we found the cemetery about an hour early, probably due to Steve's erratic, dangerous driving.

Steve got out and looked at the various tomb stones, Kelly and Chug squeezed into mum's car for warmth, while mum fed the baby, and I paced around a little bit and looked at a couple of tomb stones, staying a long distance away from the freshly dug hole not far from where mum had parked. (Steve had a good look at it at some point).

After a while the ladies got out of their car after mum asked me and Steve to fetch the reefs from his far. I began to suspect that I was being somewhat petty, as I wouldn't touch the reef sent by Tanya's father, taking the one mum had selected instead. We put 2 cards on it, one from mum and one with a short message from me, Elise and Chug. I don't really remember what they said. My message read something like "Tanya, I love you as much as any real sister and I always will".

I do love Tanya, as shamefully distant as we were. I deeply admired her until she gave up... And even then I felt the deepest of sympathy when I heard the circumstances of her death. And I felt these things every bit as much as I do for Elise or Charles or any other relative, even as short as our time together was. In a strange way it was a relief to know that I loved her.

I was worried about how I felt... I couldn't tell if my lack of feeling simply due to my Asperger's or if I really didn't feel anything. It only really hit me that she was gone the night before; Jeff said something about seeing Mark and Zoë (fumbling a little bit, trying to remember Zoë’s name) and I was about to open my mouth to correct him and say something like "you mean Mark, Zoë and Tanya" and then realising that Tanya was gone.

I don't know if the 5 stages of grief will never apply to death for me as they do for everybody else; I seem to miss staged, or take them in the wrong order and tend to get through them very quickly*, but I guess my grieving prices started there.

Much as I wanted to I was still unable to shed a tear.

Having finished my message I put them both in the card holders and the 6 of us (it may not have been 6, the baby may have been in the car with somebody attending to him) stood around, waiting for something to happen.

"Collo" was the next person to arrive in his van with a couple of other people we didn't really get a good look at, although we all seemed to notice that one of them was on crutches but didn't see the person's face.

He walked up to us and asked if we were alright. We all ignored him as well as we could; I couldn't even glimpse him with more than my peripheral vision without feeling a little nauseous. Maybe he thought we hadn't heard about the things that happened between Tanya but Zoe had told us all about the absolutely despicable things he had said and done and none of us wanted to know him.

The next thing I remember Elise was on the phone to Zoe... I don't remember who phoned who but I guess Elise phoned her, since I don't remember the phone ringing. Elise told her that Collo was there and that we all ignored him and that he was there with somebody who might have been his new girlfriend, but we couldn't tell because we didn't see the person from the front and only knew that they were in crutches.

Zoe told us to move out of the way because some bikers were on their way down.

I think Steve had already returned to his car by this point; he didn't know Tanya or any of her family and I guess he felt uncomfortable with the prospect of attending the funeral (which is understandable, especially given to his irreverent nature).

We all walked around to the other side of the chapel and stood around there and, sure enough, minutes later the bikers arrived. They parked their bikes on the other side of the building from us (the side we had just walked from) and they marched back towards us, looking stern and into the chapel. They walked out and seemed to be looking around.

Elise took it upon herself to see if she could be helpful, asking them if they were looking for somebody (which they were) and if this somebody had ginger hair (which he did). She pointed them in the right direction, saying that he was by his van with somebody in crutches.

We didn't see Collo again that day and the malicious thought crossed my mind (and, presumably, everybody else’s) that hopefully nobody would do so ever again.

More people started to turn up and eventually the funeral procession arrived.

We awkwardly tried to position ourselves as out-of-the-way as possible, which sadly meant we found ourselves bunched next to the doorway where we were available for all to see...

I know this is something which shouldn't have meant anything but I have attended enough funerals to know that there is a weird kind of pecking order when it comes to position and being seen much the same as weddings. The mourners who were the most closely related to the departed (spouses, parents, children, siblings, etc) will be at the head of the procession (after the casket), at the front of the service and at the head table of the wake, followed by 'lesser relatives', people of importance, close friends, and those who wished to pay their respects and be as inconspicuous as possible. It can all get very shallow from time to time, but I didn't want to be perceived as some stranger standing in the place of Tanya's closer relatives. Again I wandered if I was being shallow or petty.

Fortunately Mark and Zoe made a point of coming up to us and greeting us all exceptionally warmly and stood with us.

The preacher said that there was no way everybody there would fit in the small chapel.

Both mum and I said that we would remain outside if there was no room. I think she was able to procure a seat and I remained outside with the baby, deciding that (uncomfortable as it was to stand there carrying his chair) my own comfort should be second to that of Tanya (such as it was) and the strangers there whose closeness to Tanya was a mystery to me. The undertaker ushered me in, though, saying that I shouldn't be stood out there with a baby (I'd just like to point out that he was well wrapped and it was as cold inside as out, so standing in the shelter of the doorway he would have been fine but she seemed to find this idea unthinkable) and not only sat me near the front but on a bench in front of the other mourners, adjacent to Tanya, next to 4 or 5 people I had never seen before.

Sadly I found myself trying to feign the appearance of my genuine sadness so that anybody not aware of my condition who noticed me (i.e., everybody except mum, Chug and Elise) wouldn't think I was totally heartless. This time I didn't think of myself as shallow because I reasoned that if somebody did spot somebody who didn't look as if they were deeply upset would become distracted and [further] resentful of me. Some of the contortions in my face, at least, were caused by real pain from some of the things being said by the speakers.

The baby awoke during the service and began to make noises and I fed him his bottle (after all; he's usually of the opinion that being awake means its feeding time) and took it away again when he coughed slightly. He cooed and gurgled happily and quietly (for the most part) throughout the service and I caressed his cheek and his faint, wispy hair from time to time.

I noted that the reverend twice mentioned all of Tanya's brothers and sisters and other immediate family without mentioning Chuggles (I didn't mind that Mum, Elise and myself weren't mentioned), her half brother; as much a brother to her as her half siblings Gaynor, Daniel and Alex who were mentioned. But I understood; her mother was for some reason resentful of us; Tanya's extended family; probably because of our connection to Carl; Tanya's father. Or maybe the list given to him was given by one of Gaynor, Daniel and Alex themselves who would have been too young to remember any of us. Or maybe it was Mark and/or Zoe who didn't include our names in order to avoid trouble with Renarta.

The list was also mentioned by Daniel, who delivered the eulogy and seemed to gloss over the years she lived with us. But this was time spent with her father, so etching it out of history may possibly be a good thing. I know I don't want him mentioned in my eulogy if only because I was taught that if you can't say something nice you shouldn't say anything at all.

It was about this time that I felt that I should create a new blog and write about the day.

Then the coffin bearers took her remains outside... The people in the front row followed, along with the people standing in the doorway, and then people seemed to be unsure who was supposed to go next. The guy sitting next to me stood up and walked out of the room, and I was sitting right next to the door so I surmised that it was probably me causing the bottle neck. I cautiously got up, trying to look around to see if I was indeed supposed to go next but nobody seemed to be looking at me. I left anyway and the rest of the congregation seemed to follow me so I guess I was.

I shuffled around nervously, awaiting the rest of my family so that I could walk with them and got separated from my mother (as I tended to during funeral processions), but Elise caught up with me and took the baby's chair off me for a couple of minutes (much to the relief of my arms) and she walked with me.

It's not often I'm glad to see her much less walk with her but I was then.

The flowers and reefs had already been taken from the chapel and hurst and displayed near her final resting place for all to see before the service. Tanya's remains were lowered into the hole and people were invited to drop roses into her grave; mum ensured that Chuggles was among them, being a genuine half brother.

Then, as people started walking away something happened that I had never seen at a funeral before; people stopped to admire the flowers. This wouldn't have been so bad if it wasn't for the rather tacky feeling that came with this and I asked mum "What's happening? Are they 'comparing sizes'"? At which she sniggered but I pointed out that that it wasn't funny. It really did seem to me that people were checking to see who gave the biggest and nicest reefs and bouquets.

Gradually people began making their way to their cars and Chris (an old friend of Mark's whom we didn't recognise at first) started to give people directions. Mum told him we were from Wales
(and so we didn't really know any local landmarks or street names) which prompted him to recognise us and he said just to follow his car (a white Ford Fiesta).

Kelly and Chug decided to ride in Mum's car leaving me to go in Steve's. Steve and I nearly lost the procession to the wake a few times, probably because the car we were following didn't realise we were following him, he seemed to be having some trouble keeping up himself, he was overtaken by other cars (not part of the procession) once or twice and so were we.

We were a little worried that perhaps he was not actually attending the wake but just going straight home, however we spotted mum standing next to her car in the car park of the community hall in which the wake was being held.

Everybody else went in and I assured Steve that I would find out how long we would be (he said he didn't mind how long) so that he would know if he had time to grab a bite to eat from the nearest corner shop. After using the rest room I found mum and asked and she told me she didn't intend to stay too long, but I gathered from the tone of her voice that Steve probably had time to get some food quickly and I told him so.

The Pears side of the family, as well as the younger mourners, were more jovial than the older attendants whom I supposed were the Collo's family and Renarta's in-laws, who sat at their tables looking more like those people more traditionally found at wakes.

One or 2 of the bikers joined in the merriment but most of them sat along the wall looking as solemn as the older guests.

After a few minutes of standing around feeling uncomfortable I sat at the same table as Kelly and Chug, which Elise and Mum had been at previously as evidenced by their coats and bags. They were not far off, chatting with Mark and Zoe.

Then they, along with Kelly, wandered off into the bar room for a few while leaving me and Chuggle with the baby again. (Not that I mind, I love that baby incredibly and I love Chug just as much). I had a few crisps (some kind of smokey chicken, I suspect) but I didn't like them to much (not that this stopped me from picking at them every now and then; I was famished) and I chatted with Chuggle about some mindless stuff.

I couldn't help but notice Chris from time to time, as he was laughing and joking loudly with some people I didn't recognise, exchanging stories which I don't think were really related to Tanya. It seemed somewhat disrespectful to me and made me a little uncomfortable, not that I could really make out what they were saying specifically, and I found myself regarding them with some mild disdain.

After a while Mum, Elise, Kelly, Zoe and Mark returned and I got to hug both Zoe and Mark, told them that I missed them (it just slipped out, unexpectedly. It was true enough but I hadn't actually planned on saying it. I hadn't really realised how much I missed them until I said it, to be honest) and we all got to chatting (I say 'we'; I chimed in every now and then but I'm not a brilliant conversationalist).

Having spent some short amount of time (in truth I have no idea how long we were in the building, it could have been half an hour it could have been over 1 hour) we went out to set off home. Mark and Zoe came out to see us off and the small talk continued. We talked about the baby, computer games, and work in that particular borough of London
.

We had time to talk considerably because Steve still wasn't back from getting a snack. Mark assured us that the nearest corner shop was just at the end of the street so we weren't sure where he could be. Steve told us he often gets lost in big cities, so we imagined him in lost somewhere in the middle of town. Well somebody imagined that; my imagination tends to get the better of me and I imagined him getting arrested for making another illegal u-turn somewhere. This was a thought I probably should have kept to myself.


He eventually returned, having found some kebab house some way away where he got himself a burger. We pointed out the shop mark told us about as wel left; it was less than a minute away.

We went back to the cemetary for one last moment at Tanya's grave. First Elise went to see it and Kelly followed and I waited to accompany mum, who stayed with the baby. I went to see it with Kelly as Elise returned. It wasn't the personal moment the ladies hoped it would be; it was being filled in by some some ugly men who seemed like the couldn't care less about whom they were burying. As cold as they found it it was the thing that eventually made me cry, and I turned away so that Kelly woundn't see. (I have a problem crying infront of other people).

I thought about her half siblings in London and her 3 children. Tanya was a mother or big sister to everybody she was a friend with, even people of her own age. The world seriosly needs more people like her.

I opened mum's door so that she could go and pay her respects but Elise had described it to her and decided to stay.

We stopped for a KFC on the way home. It was some cheesy radio 2 show with Chris Moyles or Chris Evens or Christ Tarrant or some other terrible radio personality called Chris taking cheesy requests. Although it's kinda weird; in the dark on a long drive after a long day (particularly when everything you see is only lit up by the cheap orange glow of street lights) there's something kind of comforting about the tone of the radio, no matter how bad the programme is.

Kelly, now that Chuggle was in the other car, stretched out on the back seat a few times to sleep, according to sleep. I nodded off myself a few times but I don't think it was ever longer than a couple of minutes.

Dave was there when we got home. We watched some TV together and eventually we went online to play World of Warcraft. I would have gone to sleep but I was over-tired and didn't see the point of doing so until I came off my 'second wind'. (I would just be awake, thinking, all night). When I did head off to bed I remembered that I really wanted to record the things that had happened so I came back to my room and started a new blog. I was up until sometime after 5am writing until I couldn't keep my eyes open.

Although Tanya's body was buried on the 16th of February, she wasn't there. I believe in an afterlife but this is something differant... It wasn't her body she left behind. She died once in december and what was left behind was what remained. When that died 2 weeks ago it wasn't even the remains of Tanya, it was just some girl in a box.




*I don't know what happened with my nan, 6 years before; it was about 4 years later when I started crying uncontrollably in the middle of a night when I was having trouble sleeping.