44/52 2017

Week 44
30 October - 05 November



A few years back, a couple of very large trees at one of our local parks had to be cut down for safety reasons after they were badly weakened by some sort of arboreal illness. In a burst of creativity and sensitivity, the stump and larger chunks of decent wood were turned into sculptures and dotted around the park, including our friend the hedgehog.

07/52 2017

Late hitting post again...

This picture marks a great leap forward in Jamie's eating abilities.



Up to the age of six months, Jamie was exclusively breastfed. Then we started to introduce purees on a spoon. We had a rhythm going where we would load the spoon and pass it to Jamie, and he would pilot it to his mouth or thereabouts (as in this post, it was messy but it worked).

Next was finger foods, and then something unexpected happened - he started refusing to hold the spoon and would do any amount of gymnastics to just get his mouth directly to it instead. I consulted the weaning expert at the children's centre and she reassured us that some kids were like this. Having got to grips with shoving finger food straight in his mouth he was regarding the spoon as an unnecessary complication in the eating process. But she seemed quite relaxed about it and said we should just keep eating with cutlery in front of him, let him have the spoon if he wanted it even if only to play with, and not worry.

Well, that's easier said than done, but it seems to have worked. Last week, after several months, Jamie finally reached for the spoon again. What's more, we don't even have to load it any more. He can have his bowl, he can scoop up his food, he can put it in his own mouth at his own pace. He's just suddenly got it, all at once.

Bonus video footage:

Optimistically, 1/52

For quite some time now I've been enjoying Carie's 52 Project photos - one photo a week of each of her children. She's doing it again this year and asked if anyone else wanted to join in.

Truth be told, I'm rather intimidated by the mummy blogger scene and while I admire a lot of the events, projects, photos and of course blogposts that happen within... the community appears to be full of overachievers and that's not me. I like taking snapshots with my phone, but I'm not a great photographer and have no burning desire to improve. I like writing, but I prefer sleep, and when I do write, I rarely hit Post. I like cake, but I buy it from a shop. I can knit, but slowly, and not particularly well. My Kidston-fu is lacking. Online mums evoke an even more extreme response of admiration and fear than the cool kids at school did.

But, I have the great privilege of knowing Carie in "real life", and although the tag of overachiever would perhaps not be entirely misplaced... she's just too friendly, pleasant and cheerful a person to be scary with it. And I feel confident that if I join in with her on the 52 Project, she's barely going to notice the quality of my photography and won't give a hoot about my failure to change my blog template since, um, well, ever. She's just going to enjoy seeing Jamie grow in the same way I enjoy seeing Kitty, Elma and Pip grow.

So, I'm taking the plunge and hoping to stick with it. Here goes, with picture number one...



I like this picture because it encompasses all the best bits of having Steve at home with us for the holidays (that's his hand disappearing in the bottom right hand corner). While we tried not to disrupt the routine too much, having lazy mornings of the three of us all playing on the bed together was an absolutely brilliant way to start the year.

Caesarean

Jamie was born by planned caesarean.

It was an odd decision to try to make. My condition isn't such that the medical professionals involved were insisting that a c-section was the only way to go, but the option was on the table from the outset. The decision, however, was entirely down to me, which helped me feel a lot more in control of things.

Surgery is never something to take lightly. As operations go, c-sections are pretty safe, but they ultimately involve a slice through your abdomen big enough to haul out an entire wriggling baby - there's a lot of risks to be considered and it typically takes longer to recover from than a complication-free "natural" childbirth. But we felt that, for me and my body and what I know of my condition for the last decade, an attempt at "natural" labour would be likely to end up in an unplanned c-section anyway, that would happen while I was exhausted to the point of incoherence - and then I would have to recover from surgery AND labour simultaneously, instead of one or the other. Therefore the best way of ensuring things went smoothly, that I recovered as soon as possible, that I understood what was happening and was mentally present for the birth of my child, was a planned c-section.

A secondary factor was that if I attempted "natural" birth and failed, that failure would be very upsetting. I would feel that I'd let the baby down. If I'd been so exhausted that I couldn't understand what was happening when I went into theatre, then my consent would have been a fuzzy issue, and I would feel like my hoped-for "birth experience" had been taken from me. It seemed more emotionally sensible to set my expectations at an achievable level.

I have to admit that even now, two months post-partum, I'm still not entirely reconciled to the c-section on the emotional side of things. There is so much information out there about the many and varied reasons why a "natural" birth is better for both mother and child, if there are no other factors to be taken into consideration, but pretty much all the information leaves out that caveat. Pregnancy magazines cheerlead expectant mothers along with soundbites like "having a baby is what your body was designed to do!" and (quite apart from the feminist and anti-creationism problems I have with that statement) this approach really excludes those of us whose bodies struggle with certain things. Every magazine I read gave me exactly the same feeling of "this isn't for you; you're not our target audience and we'd rather not have to consider you" as a shop or service building that has steps out the front. Goodness knows what it does to women who need c-sections but aren't already used to finding themselves outside the dominant paradigm.

Anyway. A planned c-section it was. The planning extended to the date, but not the time of the surgery. The way our hospital runs it is: people scheduled for c-sections that day arrive at the labour ward at 8am, and then the day's theatre schedule is created in order of priority, to include the women who are already in labour and for some reason need or are likely to need an unplanned c-section. I think this is a really good way of organising it. Not only does it mean that the women most in need are prioritised, but also, it was nice having some unknown elements in what was quite a medicalised version of having a baby.

On the day, we turned up at 8am and I was given a theatre gown straight away and told there were only two of us in for surgery that day so we'd likely be meeting our baby quite soon. Unfortunately emergencies started to happen and after a while our midwife came back and told us to get my socks back on and bundle me up in our coats to keep warm during the delay.

A while after that we were moved to the post-natal ward to wait. It had been agreed ahead of time that the best way to deal with my mobility needs after the birth was to place me in one of the side rooms, which had solid walls rather than curtains and a bit more space either side of the bed than the cubicles on the ward. I think perhaps part of the reason we were moved was to make sure that the room the ward manager had felt would be most suitable didn't end up being reassigned to one of the emergency cases. It was a lovely and unexpected bonus to get the chance to relax and acclimatise to the post-natal environment while still being pre-natal. I think the only downside was that being pre-surgery I had to keep declining the offers of breakfast, tea, elevenses, lunch, more tea... Mostly we were just being thankful that we weren't an emergency.

I did have to send Steve to go and eat something. He'd been too nervous to eat first thing in the morning. By mid-morning he was hungry, but didn't dare go to the cafeteria in case we were called for theatre while he was gone. Eventually around lunchtime I convinced him that I'd rather have him be two minutes late into theatre, than risk him passing out while I was lying there immobilised on the operating table.

And then suddenly, mid-afternoon, our midwife appeared in the room wearing scrubs and asked if we were ready? We took the coats and jumpers off me, I got into my wheelchair, and we followed her to the corridor where the operating theatre was. At that point, Steve was directed to go put some scrubs on, and I went into the theatre. There were windows and natural light as well as the electric lighting, which I hadn't expected but quite liked. I was in my chair right up to the operating table.

First I had to sit on the table to have the spinal anaesthetic. The anaesthetist(?), who I think was called Scott, stood behind me, while another person (doctor? nurse? other? I think his name was Trevor, everyone introduced themselves to me by first names rather than titles) supported me to try and bend forward enough that the needle could go in between the correct vertebrae. This didn't work so well - I think my back muscles had tensed from sitting in slightly awkward positions and also from being suddenly cold, plus of course I had a massive baby bump to try and bend around. Another person joined in, and the combination of being manhandled, but so very carefully, and at such an emotional moment, meant it was a weird halfway point between wrestling and a group hug. Eventually the spinal was in, though, and I lay down on the table and realised that I had, after all, forgotten to take my socks off.

At that point Steve was allowed in, although his first job was to return my wheelchair (and, I presume, my socks) to the post-natal ward. It can't have taken him more than two minutes but it felt like a very long two minutes. Meanwhile, probably-Scott was adjusting my drip based on what I was telling him. I did feel a bit silly and complain-y saying things like "I feel cold," and "I don't think I'll throw up but I feel a bit nauseous," but since his response was invariably "okay, we'll take care of that," followed by whatever it was being resolved, I guess it's what I was supposed to tell him. Finally a can of spray was squirted first at my arm (where I felt it as freezing cold) and then all over the rest of my body (where I didn't feel it at all), and we were ready to go.

Steve came back in and was told to sit at my right shoulder, and probably-Scott was at my left shoulder. There was a sheet suspended over my chest, and everyone else was on the other side of the sheet. The people in the room did do a quick run-through of names and roles but my mind was otherwise occupied.

I did not feel the incision, but I could feel the baby still moving inside me, and I could feel that my lower body was being moved about, although I have no idea what position I ended up in. It's not exactly a delicate operation and there was a whole lot of pushing and tugging - sometimes enough that my upper body on "our" side of the sheet was visibly moving. There wasn't any pain at all, but having the rummaging-about sensations meant I didn't feel detached from what was happening. Steve kept talking to me, and I kept breathing and trying to relax, and then there was the sound of a baby crying, which seemed so... scripted? clichéd? but of course it's what happened, and then someone said "oh, he's gorgeous!" followed by "erm, did they know if it was a boy or a girl?" which Steve and I couldn't help laughing about.

Steve took pictures with my phone of Jamie being wiped off, weighed, en-nappied and wrapped in warm towels. Then as per our birth plan, he took the first cuddle while the various wires and monitors around my chest were moved to allow Jamie to be placed on my chest for skin-to-skin contact. Probably-Trevor came round the sheet and joined probably-Scott for this bit but I really wasn't paying attention to anything at that point except Jamie, who didn't yet have a name. He was just Baby, all tiny and warm and fragile. He looked so very much like a complete and individual person that I could hardly believe that just a few minutes previously he'd been inside me, effectively one of my internal organs, growing out of the things I ate. I was aware, on some level, that the operation was still continuing, but I couldn't feel a thing any more. We kept cuddling all the while that I was being sewn back up, and he even stayed on me while the two of us were transferred from the operating table to a hospital bed and wheeled through to the recovery room, where the midwife helped us with our first attempt at breastfeeding.

It was a lovely birth experience. I don't have a Natural Childbirth Top Trumps card (hours in labour, number of stitches, etc) but in many ways that's a relief. I just have the care and friendliness of the NHS helping us transition to being a family of three with a minimum amount of drama.

Phew!

Excellent news this week - Social Services have managed to put a care package in place for me as I transition to parenthood.

The remaining three weeks of pregnancy (plus the two weeks of Steve's paternity leave) there's not really any notable change from my existing care package. My understanding is that they are taking the view that if I've survived pregnancy for 36 weeks on my existing arrangement I will survive the rest.

I disagree with this. I have been horribly isolated and largely housebound during my pregnancy, because I've had to abandon my former activities as I've needed to use up so many of my hours on support for/transport to medical and social services appointments and trying to get the baby essentials in place. We've been extremely lucky in that I haven't had the sort of complications that lead to weekly appointments or all-day clinics. I've also been unable to participate in a number of the recommended activities that I had been hoping to engage with during pregnancy, such as swimming/aquanatal, antenatal exercise/social groups, shopping events that offer discounts on baby equipment, etc.

Plus of course, in this final month, my body is drastically changed and the baby is getting noticeably bigger week by week. We took 30 weeks to get to 3lbs, but only another 4 weeks to get from there to 4.5lbs, and by 39 weeks we should be between 6 and 8lbs. I'm huge! I can't lie on my front or my back any more! I don't dare lie down on the sofa while I'm alone in the house because I can't get back up! I need to wee all the time and I haven't got my stairlift yet! There's not enough room in my belly to eat a proper main meal, I'm supposed to be eating several smaller ones throughout the day but I don't have support to do that! If pregnancy is a marathon, the last bit of it is seriously uphill compared to the previous months!

The failure/refusal of social services to properly support my needs during pregnancy has caused a loss of freedom and has had a documented impact on my mental health (as well as, to a less dramatic extent, my physical health), and that baby and I have "survived" has had more to do with luck and favours than any idea that my support package has been adequate.

However, I have a choice. I can spend the next three weeks struggling to cope AND struggling to fight with social services for resources which, even if I technically win, won't possibly be in place before the birth. Alternatively, I can spend the next three weeks struggling to cope AND trying to focus on thinking the happiest thoughts I can, resting as much as possible, and trying to be ready for what happens once the baby arrives.

And this is the really good news. Once the baby is outside me and Steve has gone back to work, social services have granted me 40 hours per week of support.

It doesn't mean I'll have someone here all the time - Steve works more than 40 hours each week and there's commuting time as well. But if I structure it as two shifts totalling 8 hours a day, 5 days a week, and if I'm careful about making sure that at the end of each PA shift baby and I are safely set up with everything we'll need in the next hour or so to hand, then it will work.

I can feel safe.

Of course it isn't indefinite. The plan is to review it every two weeks (I admit to wondering if this will be two calendar weeks, or a social services "two weeks") and to reduce the package as I recover from the surgery, baby gets the hang of feeding, the medical appointments peter out, a routine begins to develop.

But that's okay. I can go into surgery to have the baby knowing that, at least while the stitches are in, someone will be around to help me fulfil my role as a parent. The first month, which I anticipate as being the most difficult, I will be supported.

I had been so scared that they were going to wait until an actual crisis occurred, that either the baby or I would have to be hospitalised to "prove" that we needed help before any help would be forthcoming. Or, perhaps worse, that the baby and toddler years would be like the pregnancy - baby and I would be trapped at home struggling to do anything more than survive, but that with luck and favours and Steve turning himself inside out we'd scrape along *just* well enough that no red flags would be raised, leading to a situation that never improved and a child who started school with all sorts of disadvantages because I had never been supported to provide them with proper pre-school education, socialisation, nutrition, exercise...

Instead, I have a chance. I *will* be adequately supported for that first month and probably for the second month as well. If I can use that time to engage with the Health Visitors, if I can develop attendance at the breastfeeding groups and other baby activities, if I can demonstrate that I'm eating well, if I can line classes and activities up for 2016, then I will be in a strong position to argue that I need to continue with those things to fulfil my parenting role.

The Nursery

I don't want to give the impression that this pregnancy is all about doom, gloom and disappointment about disability-related problems. One of the most enjoyable things that we've done has been to prepare the nursery for the baby.

Six months ago, I wouldn't have even dreamed of calling it a nursery. It was a boxroom. Because a defining feature of the room was that since even before I moved into this house, it was full, and I mean full, wall to wall and floor to ceiling, of boxes. Occasionally Steve would have a brief flurry of activity to reduce the amount of Stuff in there - most notably, when we got three big Billy Bookcases for the living room and the boxes of books that had been hidden away for years finally got a more appropriate home - but every three steps forwards seemed to be followed by two steps back as we needed *somewhere* to put an unwanted gift, or a bag of clothes for the charity shop, or a broken Whatever that needed to be taken to the tip "at some point, but not right now, because they're closed/it's raining/we're busy/etc, let's just pop it in the boxroom for now so it's out of the way."

Even as late as June, in a discussion about nursery plans with other women who are due to have babies in October, I somewhat resignedly posted this:

If it helps, ours still looks like a boxroom half-full of junk. I’ve given up on “beautiful” and am prepared to settle for just being able to get the carpet cleaned before the baby is here.

But by early July we were able to get to the window and in mid-July, we bought paint. By the end of July, the walls were starting to look like this:



Steve did the big roller work, the magnolia and the blue. I did the clouds, freehand, using a sponge. It took quite a while to get them *all* done - obviously I could only do very short sessions and only while someone was able to help me on and off my table (a ladder is more traditional but would have been asking for trouble). But I was so happy with how it came out, and it meant a lot to me to have done them myself.

Painting complete, I was able to go ahead and order new blinds, and a new carpet too (plug goes here for Godiva Carpets, a local firm who provided excellent customer service, fast fuss-free fitting, and competitive pricing). A set of flatpack drawers was assembled, and is now filled with washed and folded vests, babygros, sheets, blankets, little hats, tiny mittens and other assortedness. The Big Cot has been assembled too, although at the moment the mattress is still in the wrapper and my hospital bag is sitting on top of it, because at first the baby will sleep in our room. And then to top it off, my mother found some monkey decals online.





It's unequivocally a nursery now. Steve and I both like going in there just for the reassurance of it, that it is a completed project that's ready for Offspring, one that doesn't have to be a second-rate panic solution cobbled together at the last moment. It feels good.

Bank Holiday

The bank holiday weekend managed to coincide with some absolutely magnificent weather, so on Friday we loaded up the car - me with my picnic blanket and knitting, Steve and a friend with more camera equipment than you can shake a stick at - and set off for Wales in search of Scenery.

It'll be a while before the lads get round to uploading anything from their Big Cameras, but here's a snapshot from Steve's action cam:



This is Lake Vyrnwy, as viewed from a picnic spot accessible from the perimeter road. Getting from the parking area to the grass, while only a few metres, was a bit precarious in places. I opted for wobbling rather than wheeling, although I think a fit person in a more sporty chair might well manage. No filters have been added to the picture - the sky really was that blue. I started off knitting on my blanket, but after a couple of rounds I was just sprawled out, soaking up the sunshine and listening to the water.

We considered trying to visit the area by the waterfall where Steve and I got engaged, but the track now has a locked gate across it, so we had to abandon that plan. It's slightly sad that I won't be able to get to it again, but we're not planning to get engaged again, so it's not too much of a tragedy. And it was a bit of a dire track.

So instead, we carried on with a scenic drive along to Bala, with another couple of stops around the lake there. I seem to have avoided getting sunburnt, although that's more luck than judgement. It's a good start to the summer.

Eden Project - Time of Gifts

(picture heavy)

Steve recently finished what I shall tactfully describe as a "gruelling" work contract (and yes, that is putting it mildly) which took a toll on both of us, and we decided that we were owed a little break before getting into the fun of preparing for Christmas and trying to figure out where our life goes next.

Given a free choice of anywhere to go, nine times out of ten I will pick the Eden Project (the tenth time I will beg to stay in bed and be brought cups of tea). In the last year we've been to Cornwall three times, and on each occasion we've visited the Project for two or three days, and I still always feel sad to leave.

Last time we went was in May, when it looked like this:


In November, even inside the Biomes, it's more like this:


I still get a great sense of peacefulness and well-being from the Project. And the access. Oh, the access. No being sent round the back, no staff tutting at you if you can't keep up, no "special" holding pens areas, no leaving you sitting by the bins while they try to find out if anyone knows where the keys for the service lift have got to. Universal design, access is front doors and main paths all the way. The slopes can be a bit of a workout and there is a certain amount of mileage involved in getting around the place, but they have scooters and powerchairs which can be booked in advance. November being the off-season, they weren't all booked out, so at the gate I was politely offered the option of using one of their powerchairs "if it would be easier." More importantly, my choice of sticking with my own chair was accepted without fuss.

As he tends to, Steve took hundreds of photographs of all sorts of beautiful plants, flowers, sculptures and suchlike, and I'm sure soon he'll load them up to his Flickr stream which will be much better than me trying to describe. But he's let me pop a few onto my own Flickr stream so that I can blog this.

The second day of our stay, the Friday, was the beginning of the winter celebrations at Eden, which they call the "Time of Gifts". There is, of course, a Father Christmas with a cohort of elves and a stable full of actual reindeer, much of which is centred around the Sami people of Northern Europe. I was more interested in the goings-on within the Mediterranean Biome, though - storytelling, music and craft activities particularly. There are definitely worse things to do on a Friday afternoon than to sit and make Christmas decorations and chat with a bunch of friendly strangers, listening to live music and surrounded by the gorgeous smells of Mediterranean plants. As it got darker, Steve returned from his photography spree and brought me a hot chocolate to warm me up while we listened to the evening story and music.



Then it was time to leave the Biome and get ready for the lantern parade. There were large sculpture lanterns being carried mostly by staff and volunteers, but anyone who wanted could join in the parade with a pyramid-shaped lantern on a stick, with a candle inside it. Anywhere else, I'd have assumed I couldn't participate. At Eden, no one batted an eyelid. So here I am, in front of the big Christmas tree outside the Core, carrying a lantern wedged between my legs and my wheelchair, waiting for the parade to start:

And modelling my own handknit hat by the light of my lantern:


The procession began with large sculpture-lanterns coming down the ZigZag path towards the Core building, where we were waiting. It was an impressive sight, although with a slightly hairy moment as a nearby child forgot to pay attention to his own lantern (my reaction of "excuse me! please don't set fire to me!" made me realise just how incurably English I can be). As the sculpture-lanterns and their accompanying drummers came past, we were filtered into the procession. It was quite a strange experience to be actively participating in something like this, being one of lots of little bits. There was a very carnival atmosphere.


The procession wound around the gardens outside the Biomes, lit by flame torches with occasional groups of non-participating onlookers. It ended by a gazebo of fairy-lights, where the Eden Choir were waiting to perform. Since the wheelchair makes me an honorary short person, I was ushered to the front with the kids so we could see.



Listening to the Eden Choir was lovely, and some of the drummers joined in ad lib. Then there was a short and unexpected burst of fireworks which sent Steve whirling around to try and catch a shot:


Finally, this lovely piece of fire art, lit while the choir sang, reminded me very much of the Paralympic closing ceremony which meant that in a strange way it reminded me of summer again.

Riding for the Disabled

A few weeks ago, I decided to embark on a bit of an adventure. For ages I'd been trying to think of something new to do that would enable me to get out, get some exercise, meet people, but be in a safe environment and within my own abilities. Eventually I got in touch with the Riding for the Disabled Association and after a couple of false starts (many of the groups listed as being local to me were for children during term time only) I found that the nearest place for an unaffiliated disabled adult to try riding was at Lowlands Farm, in Warwickshire.

Steve took me there for an initial visit which made the whole idea seem a lot more realistic. I was able to propel myself around the site and all of the people were incredibly welcoming and friendly. I found myself really looking forward to giving it a try once the paperwork was complete (a sign-off from my doctor to confirm the basics of my condition, not too complicated, but it took a couple of weeks).

Meanwhile, I attended to watch another lesson. If I'd watched someone who knew what they were doing and had lessons X times a week trotting about being excellent on a horse, I probably would have just dropped the whole idea. I've no desire to compete, or even to excel. I don't want to own a horse or spend half my life hanging around stables. I am not really a horsey person. But instead, I was able to watch the lesson of a woman who appeared to be more or less on the same page as I was but a few months into the process. Benefiting from the stretch and the movement, her posture and muscle tone were improving. That was what I wanted to achieve and it made me even more impatient for my paperwork to come through.

Which brings us to yesterday morning and My First Riding Lesson.

First we got me kitted out with a helmet and then I rolled up the wheelie-accessible mounting block. This brought me alongside Harvey at a height that made it easy to sit on him. That was okay, I was all, hey, check me out, I'm sitting on a horse, how good is this?

Then the lady holding the lead rein started to take us away from the ramp and into the huge barn that is the riding school, and I realised just how high up I was sitting, on a moving animal, without any kind of grab rail. I didn't want to touch the reins in case I did something wrong, so I just gripped the saddle and prayed that we would stop soon. Thankfully we did come to a reassuring halt just inside the school and my instructor started adjusting bits of saddle so that I was sitting properly.

Of the next fifteen minutes, I just have a hazy recollection of going round and round the school trying to follow a thousand instructions at once while moving the whole time. I kept wanting to say look, I would be able to sit up/lean back/head up/hands here/feet there/etc if only I wasn't being jolted around on the back of this moving horse! A lot of the instructions made sense. For instance, it was actually more comfortable when I looked up and didn't lean forwards. But then she'd tell me to bang my heels into his sides and (even apart from the yes-I-know-it's-stupid fear that I would hurt the horse) I'd concentrate so hard on that, I would end up automatically looking down again at my feet/my hands/the horse/the instructor.

Nevertheless. There was an awful lot of support and positive reinforcement in with the continuous flow of instructions - it was a really good demonstration of how it's possible to push somebody in an encouraging way.

Getting off the horse was interesting, too. I couldn't get off the way I got on, with the horse alongside the great big ramped mounting block, because it's all metal and concrete and one wrong move could cause no end of trouble. Instead, one lady held Harvey still, while another stood on my right-hand side to help me swing my right leg up and over the back of the horse. My instructor was on the left-hand side and guided both my legs as I slid down to the floor, and then I stood still for a minute or two with my body against the horse, arms on his back, and the instructor supporting me from behind until the world stopped spinning. Hopefully as I gain a better idea of where I am and where the horse is, I'll be able to do that on my own.

Everyone warned me that I'd be sore the next day, but to be honest, it isn't too bad. I mean, I can feel it, certainly, especially in my back and my inner thighs, but I've woken up with worse pain and the regular ibuprofen that I take anyway seems to be holding it in check. I can still move as much as I usually can, and I've even managed to get a load of laundry done.

Next week's lesson is already booked, and I can't wait.

Wedding Venue: Stoneleigh Park

Apart from the date and the dress, the other big thing I didn't want to broadcast online until after the wedding was the venue.

In England, you can get married in a church, in a register office, or (since the 1990s) in "approved premises". Since neither I nor Steve have any religious beliefs, it would be disrespectful of us to get married in a church, not to mention meaningless. And there's no parking - not even blue badge parking - at the register office's "Ceremony Rooms", so approved premises it was. This has the other big advantage that you can have the ceremony and reception in the same place.

We had already decided that I would use my chair for as much of the day as possible, and of course there's always the chance that guests may have their own access requirements, so accessibility was important to us. I regret to say that most of the venues in our area either admitted outright that they could not provide proper wheelchair access, or simply didn't bother to respond to my queries. This took us from the choice of fifty-odd venues that a non-disabled bride would have, to a choice of about half a dozen.

Stoneleigh Park, also known as the National Agriculture Centre, is an absolutely unique venue. They've got all sorts of on-site facilities (4x4 offroading? Segways? Helicopter landing pads?) and different styles and sizes of room. Access, while far from perfect, is much better than at many of the other Approved Premises, but what really swung the decision was the attitude of the staff.

You see, there are plenty of wedding venues that hold perfectly "nice" weddings as long as you are having the wedding they want you to have. If you want a lovely ceremony and then reception drinks and then a mediocre yet formal sit-down three-course meal followed by speeches and a cheesy disco, they'll make it happen, but heaven forbid you suggest anything outside that template. They look at you like you've grown a second head or something.

Not Stoneleigh. I'm sure they could do that sort of wedding, and they'd probably make a perfectly good job of it, but it would be a wasted opportunity. They're used to holding Major Events. They're not primarily a hotel, or a golf club, or a village hall. They're a dedicated events venue accustomed to dealing with hundreds, thousands of guests at a time. This means that they aren't scared of doing something different. They pride themselves on flexibility. The only limits were (1) the laws of time and space, (2) the law of the land, (3) imagination and of course (4) money. Not as much money as you might think, though. I mean, they're not a budget option, but their quote was competitive with the hotels and golf clubs who were really offering much less for the money.

The Stoneleigh Park staff were absolutely awesome. My first point of contact was a woman called Rachel and she co-ordinated all the planning for rooms, facilities, liaising with our on-the-day suppliers, making sure we had all the right contracts and invoices, that sort of thing. Whenever I had a problem or a query I could go straight to her, and especially in the last few days when last-minute things popped up, she was wonderfully calm and capable at dealing with them.

The other main staff member we dealt with was a man called Mark who was in charge of our catering, and was our "on the day" co-ordinator. He worked closely with Rachel to be sure he knew what our plan was, and then on the day he oversaw events and, with his team, made sure the day went absolutely smoothly. Armed with a phone, a walkie-talkie, and a little golf-buggy type vehicle for zipping about the site from location to location, he anticipated everything. I haven't seen him in a single photo, yet somehow he was always there if we had a query and the answer to any query was usually "already being taken care of," which gave the day an almost dream-like quality.

There was not a single moment, from the initial enquiry to the post-wedding feedback enquiry, where Steve or I felt our wedding was receiving any less attention than the larger events hosted at Stoneleigh Park.

The level of privacy we had was wonderful, too. There was another event on-site that weekend (a scout camp) but the buildings, gardens, and other facilities we were using were for our private use and completely separate from anything else that was going on. We didn't have to fight town-centre car parking or put up with intrusion from pub regulars. We didn't have to schedule our food around other patrons of the restaurant or try and ignore the decorations from a playgroup. There was a handy on-site hotel, but our celebrations were in a completely different building. It was like having a tiny world set up entirely for the convenience of us and our wedding guests.

So we got our bouncy castle. We had a garden. We had comfy sofas. We had pictures by a lake. We had a cream tea. We had platters on tables rather than a buffet. We didn't need a seating plan. We were able to choose what drinks were served at the bar. Our estimated finish time of "erm, we'll have to see how it goes," was acceptable. They were completely unflappable and didn't say No to a single suggestion, although they often made suggestions that enhanced our ideas with the benefit of their experience, which was very welcome.

I really would recommend Stoneleigh Park as a venue to anyone planning a wedding.

Wedding: the Aftermath

There are certain patterns with ME/CFS, and one of the major ones has to do with the relationship between activity and fatigue. I follow the classic pattern:

• I do something active.


• I feel tired, often rather more tired than the activity warrants.


• I have a rest.


• I feel, not 100% better, but significantly improved.


• I carry on with my life.


• ... and then somewhere between 24 and 48 hours after the activity, a massive dose of absolute exhaustion coshes me over the head, all plans must be cancelled and I spend a lot of time in bed trying to recover.

The wedding was obviously an enormous active event. I had planned out a 72-hour food and medication schedule to give myself the best chance and this went amazingly well, but the fact remains that by Sunday morning, despite a full night's sleep, I had a major spoon deficit and the knowledge that it was about to get a lot worse.

First Breakfast was a slice of wedding cake (we'd asked for a couple of slices to be put in our room just in case we didn't get to eat much cake during the reception) and that gave me the kick start I needed to go and have a more traditional Second Breakfast of tea and toast with a few of the guests who had stayed at the hotel. The hotel staff helped us divvy up the leftover cake.

We'd hired an MPV to enable us to move lots of stuff around, but even so, Steve ended up having to go home on his own with the car full of gifts and our own equipment (like the TV and the Wii), empty it all out, and then come back to collect me, my chair, the dress, the suitcase and all the other bits and bobs remaining. By this point I was starting to struggle, but I was able to walk from the car to the house.

My husband (!) and I sat down to open our cards and gifts. We were completely overwhelmed - there were cards on every flat surface and still there were some we didn't have room for, all with the most lovely messages. We just about had the sense to log all the gifts against our guestlist so that we would have an easier time writing the thank-you notes.

That's about all I can really remember as at that point the extreme exhaustion kicked in. I know I did things, like visiting a friend who couldn't make it and eating obscene quantities of cake, but only on an academic level, I don't have any personal recollection of it. Apparently right up to Thursday I was telling people what a marvellous day I'd had "yesterday" at the wedding, and although I wrote a few posts online, they were all absolute surprises to me when I re-read them a few days later! Thankfully Steve had the full week off work, so we could really do everything at our own pace.

One month on and things that are done include:

• We've recovered back to "normal for us" levels of physical and mental energy, house-tidiness, eating and sleeping patterns, etc.


• We've installed our new Stuff in the appropriate places (mostly the kitchen), and taken the old Stuff and all the packaging to the recycling centre.


• I've mostly finished changing my name, although I still keep getting surprised by the odd little things that keep popping up with my old name and I still hesitate every time I introduce myself.


• We've paid off all of the bills, and given back everything that was hired or borrowed like the car and the cake stand, so there's a nice line drawn under it all - we don't owe anyone anything.


• We've had some of the photos back and have been able to print ourselves some copies to show people.


• We've given or posted all of the thank you notes.

We still need to take decent close-up photos of "stuff" like the dress, the flowers, the jewellery and so on... Steve's been promising to do this for a while so I think I'll just wait for the next dry sunny day and take some snaps of them in the garden with my point-and-shoot - everything looks good on a sunny, grassy background, right? We need to get digital copies of wedding photos from a few more guests, and then we can start putting together an album.

I also need to do another blogpost or two about some of our vendors who really were exceptionally good.

Wedding: the party

This is me and Evilstevie enjoying our first hours of married life:


After the ceremony described in my previous post, we bundled into a car with our Official Photographer (Steve's cousin) and went to a more scenic part of the venue to take some nice, couple-y photos. I'd recommend this to anybody. It allowed us to have some time to just cuddle each other and marvel at the fact that we were actually married, rather than having to dive straight in to a busy mishmash of family politics and being congratulated for a ceremony we were still getting our heads around.

This took maybe half an hour or so, and then we headed over for the reception. I had decided ahead of time that I would walk for the ceremony but use the chair for the reception, and I think this was a good idea. Our reception room was advertised as accommodating up to 160 people. Our guest list was about 80 and about 75 came. It did look a little bit sparsely populated - especially as the summery weather saw a lot of people hanging around the outdoor areas - but it also meant that I had plenty of room for manoeuvring the chair, that parents didn't have to worry about where to put buggies, that strangers weren't sitting more or less on top of each other - all of which are good things. If I was doing it again, which I don't intend to do, and if I had a free choice of room sizes that met my other requirements, then I'd probably go for something nearer the "seats 120" capacity for an 80-person guest list.

The reception was going well when we arrived. Rather than a disco drowning out all hope of civilised conversation, we'd opted for quiet chill-out jazz and this worked really well.

We'd invited all the kids (mostly little boys between 2 and 10) to come dressed as pirates. The idea was that this way their parents wouldn't have to fork out for uncomfortable suits that would be ripped and outgrown within minutes. We'd hired a bouncy castle shaped like a pirate ship, complete with giant purple octopus overhanging the prow.

We also had heaps of chocolate coins/pirate treasure on every table, in lieu of favours...

... and our cake table had several chocolate pirates on the beach, alongside their enormous treasure chest.


We did have our Wii set up in one corner to entertain the kids in case of bad weather, or if the bouncy castle was too full. It was set to just scroll through a slideshow in the meanwhile. None of the kids even noticed it.

Lunch was an assortment of sandwiches, and scones with cream and jam. The venue caterers served these in large dishes to each table, a happy medium between the awkwardness of a buffet and the unwanted formality of a plated meal and seating plan. Obviously at this point Steve and I were both making our way around the tables, with the tragic result that I had to eat two scones. Just to be polite, obviously.

You can't put helium balloons and engineers in a room together without there being an effort to get something floating. At our wedding, this was one of the pirate ship table decorations...

... shortly followed by the Stunt Bride And Groom.


We only had one Stunt Bride and Groom which we really didn't want to lose, but we had plenty of table decorations. With this in mind, when a certain young lady begged for permission to take the floating pirate ship out and launch it... well obviously it's irresponsible and we couldn't endorse it, but we felt equally unable to say no. And it did look beautiful drifting off into the dusk.


Technically the bouncy castle was for children only, although at one point Evilstevie and I did, erm, pose on it for wedding portraits that may have had a slight bouncing element.

By the evening some people had left and others had changed into more comfortable, less formal clothes. At Jiva's suggestion, I too had a less formal outfit of black trousers and a white top to get changed into for the evening. This was another one of the Really Good Ideas. My dress wasn't uncomfortable to wear or difficult to manage as wedding dresses go, but it was more effort than my normal clothes and I was starting to get really quite tired. Also, dinner was bangers and mash with vegetables and gravy. Getting changed was definitely a good way forwards.

The bangers and mash had another effect we hadn't predicted. All those little pirates, who'd spent the day hopped up on sugar enjoying sunshine, a big grassy area to play on, and an unlimited-access bouncy castle, suddenly had bellies full of a nice solid hot dinner, and very nearly fell asleep on the spot. It was magic.

The last guests left a little while after 9pm. By that point I wasn't making sense any more, but I was very happy and had enjoyed the most wonderful day.

Wedding Ceremony

Evilstevie and I were married at noon on Saturday, 21 May, 2011.

The day was everything we wanted it to be. Our friends and families all made a big effort to ensure that the day was as relaxed and happy as it could possibly be.

I don't have any pictures yet. There are about 700 pictures on Evilstevie's camera but we haven't had a chance to go through them! The lovely Carie has put up a few of her shots which can be seen on her blogpost here (I'm afraid I can't link them as images).

What we do have, though, is the text of our vows. Evilstevie had gone to a lot of trouble setting up our home server to tweet the vows at the appropriate time (much like he did for the engagement proposal). Unfortunately, this was thwarted by our plan of having our Wii set up at the reception - on the morning of the wedding, in the hurry of extracting the TV, Wii, and associated cables from the heap of tech in the corner of our lounge, the cable connecting the server to the internet got dislodged, and although the script fired as planned, it had nowhere to fire to.

So, for internet friends, here are our wedding vows, and the reading a friend did afterwards. If you want the music as well, here's a YouTube link for my entrance music - Reunion by John Williams, from the AI: Artificial Intelligence soundtrack.

Evilstevie: I give you this ring as a sign of our marriage and a symbol of our love. I will always be there for you, to comfort and support you, and share in the joy and happiness of our love.
Cherish my faithfulness, my loyalty, and my trust, they are yours forever.

Mary: I give you this ring as a sign of our marriage and a symbol of our love. As we face the future together, I promise to be a companion worthy of your friendship. I promise to support your hopes, dreams, and goals. I vow to be there for you always.
When you fall, I will catch you.
When you cry, I will comfort you.
When you laugh, I will share your joy.
On this day, together with our friends and families, we can cherish the memories of our individual pasts, and create new ones, as, through our union, we accomplish more than we could alone.

Reading: A Lovely Love Story by Edward Monckton

The fierce Dinosaur was trapped inside his cage of ice. Although it was cold he was happy in there. It was, after all, HIS cage.
Then along came the Lovely Other Dinosaur.
The Lovely Other Dinosaur melted the Dinosaur's cage with kind words and loving thoughts.

'I like this Dinosaur,' thought the Lovely Other Dinosaur. 'Although he is fierce he is also tender and he is funny. He is also quite clever though I will not tell him this for now.'
'I like this Lovely Other Dinosaur,' thought the Dinosaur. 'She is beautiful and she is different and she smells so nice. She is also a free spirit which is a quality I much admire in a dinosaur.'

'But he can be so distant and so peculiar at times,' thought the Lovely Other Dinosaur. 'He is also overly fond of Things. Are all Dinosaurs so overly fond of Things?'
'But her mind skips from here to there so quickly,' thought the Dinosaur. 'She is also uncommonly keen on Shopping. Are all Lovely Other Dinosaurs so uncommonly keen on Shopping?'

'I will forgive his peculiarity and his concern for Things,' thought the Lovely Other Dinosaur. 'For they are part of what makes him a richly charactered individual.'
'I will forgive her skipping mind and her fondness for Shopping,' thought the Dinosaur. 'For she fills our life with beautiful thought and wonderful surprises. Besides, I am not unkeen on shopping either.'

Now the Dinosaur and the Lovely Other Dinosaur are old. Look at them.
Together they stand on the hill telling each other stories and feeling the warmth of the sun on their backs.
And that, my friends, is how it is with love. Let us all be Dinosaurs and Lovely Other Dinosaurs together.
For the sun is warm. And the world is a beautiful place.

Guestbook

The wedding looms ever closer. The craft-project chaos of my lounge is gradually turning into stacks of boxes with neat little contents-lists stuck to them, Evilstevie has confirmed his time off work, and really, everything's on track.

I keep telling myself, and anyone who has a tizzy at me, that the venue is booked and paid for, the registrar is booked and paid for, and we have the rings - therefore a wedding will take place. Everything else is fluff.

But fluff is fun, and today's fluff is the guestbook.

The guestbook isn't really a book. We're doing it in the form of lots of luggage labels, which our guests can write on or otherwise decorate as they see fit, and pin to a line at the reception.

I'd quite like to pre-populate the line, to get the ball rolling. So here's my idea. If any blog readers who aren't coming to the wedding would like to add a message to our wedding guestbook, then pop it in the comments, or email me, and I will be able to print it out and stick it to a label.

I know to new readers this may sound a bit "internet! validate me!" - no. If you don't feel you know us, or you've nothing to say, then there's no need to say anything. It just felt a little bit strange not to include the online side of our lives in our wedding day.

It is possible

Today is Blogging Against Disablism Day 2011, hosted once again at Diary Of A Goldfish - and many thanks to her for this.

Last year I was in the early stages of wedding planning, and meeting with barriers, discrimination and disablism every step of the way, so my post, It's Not Bridezilla To Want Access, detailed a few of the difficulties I was running up against.

This year... well, the wedding is this month and I can't really think about much else. So this is a short, wedding-focused post. You'll forgive me for not posting the exact date, time and location online until after the fact.

I am pleased to be able to report that we have, after a great deal of time and effort, managed to find sensible, flexible suppliers for everything we needed and wanted. The registrars have agreed that it's not necessary to ask us or our guests to stand during the ceremony. The venue rep has been awesome about communicating mainly via email as this is easiest for me. We went out of area and found a couple of accessible dress shops who eagerly helped me to try and find the perfect dress. A lovely family business who deal mainly with repairs and alterations to leather motorbike clothing have created me a beautiful pair of ivory wheelchair gloves with padded leather palms, that are both practical and feminine. A terrific Folksy seller has created our flowers, including an extremely custom corsage for me to wear on my wrist for the ceremony, that is also the perfect shape and size to adorn the controls for my wheelchair during the reception.

The triumph is bittersweet. I really do feel that I should have been able to expect businesses to be accessible. I feel that, in 2011, I should be able to make my decisions based on things like cost, quality, and attractiveness of product, rather than on which businesses were willing to have me as a customer.

All that aside though - I'm getting married. I'm disabled, I'm overweight, I have bad skin, small boobs, and terrible posture, I wear glasses, I have extremely low earning potential, and later this month I am marrying a man who was entirely uninterested in the amorous advances of at least two of the non-disabled guests attending. As a couple that faces disablism (because yes, it affects him too) every day of our lives, we have managed to put together what promises to be a wonderful, enjoyable, accessible wedding ceremony and a relaxed, personal reception party. I believe as a society we CAN get past disablism.

Naidex

Following on from my last post, I carried on in the bit-under-the-weather vein for a few days and met with repeated frustration on the balloon-quest and several other things I wanted to push forwards with. It wasn't a great week.

Nevertheless, some wonderfully good things happened - we started to get RSVPs from wedding guests, and Pip has got a decent job that actually uses his skills and qualifications, and Steve had a much-needed full weekend away with a friend. I was able to get quite a bit of rest in, and then on Tuesday, I just turned into an incredible luck magnet.

The first thing that happened on Tuesday, was that I managed to book a new balloon decoration firm.

The second wonderful thing happened - Shopmobility had received my innertubes and my wheels were fitted and ready to collect.

The third wonderful thing was that the ever-lovely Carie, ably assisted by the charming Miss Kitty, gave me a lift into town to collect the wheels. While we were about it we had a spot of lunch and cooed over lovely little baby-hats. This seems to me like a marvellous way to spend a lunchtime.

I should have bought a lottery ticket at that point, but I had to go home and recharge my batteries, physical and metaphorical, so that I would be able to thoroughly enjoy my trip to Naidex the next day.

My PA picked me up bright and early in the morning and we managed to get to the NEC with only one minor burst of getting lost (the NEC is so well signposted that several roundabouts actually have more than one exit marked as "NEC" which is generous, I'm sure, but ultimately not helpful for navigation purposes). My Blue Badge was checked and we were ushered through to the disabled parking hangar, and from there on in... it was weird. But in a good way.

I've never been to a crip-centric event before and suddenly there were these three huge halls full of companies wanting to sell me stuff. Not to prescribe like NHS/Social Services/AtW and other 'official' groups do, and not to find a way of adapting their existing product or service to find a halfway point like shops do. But to actually sell. It wasn't all or even mostly wheelchair users, but everything was accessible and there were enough of us that it felt entirely normal to be at seated height (usually I feel a bit like I'm trying to navigate a foreign world made up of steps and buttocks). I also saw at least one other person with the e-motion m15s, which was nice and made up for the man who perhaps didn't realise how loudly he was saying "f---ing show-off with fancy wheels grumblegrumble etc."

There's some wonderful inventions out there. A few of my favourites were:

• A small phone, too small to be much use as a general phone, but that wasn't what it was for - it had just two buttons to be preprogrammed with emergency numbers and was small and light enough to be worn as a wristwatch (it also tells the time). Infinitely preferable to those emergency-button lanyards that reside uselessly on the bedside tables of elderly people up and down the country.


• Adjustable height kitchen worktops, so that a prep space, sink, or hob can be raised or lowered at whim enabling one kitchen to be usable for multiple people with different needs in the same household - like a woman who wants to sit down and a man who's tall and dislikes having to stoop all the time.


• SafeSpaces, which are basically like indoor tents. Designed with autistic kids in mind, they create a small, manageable, safe place for sleep and timeouts. They're soft, waterproof, wipe-clean, with low beds, and they're anchored to the floor 10 inches from the walls of the room so that the user can't hurt themselves. Inside, there's all sorts of sensory therapy stuff, and it was so soothing... I sort of wanted one myself!

Then there was all the tried-and-tested stuff - mobility scooters, wheelchairs, lifts, ramps - and I remember being thrilled to spot grab rails in a whole rainbow of colours rather than just boring clinical white/dark blue.

A number of Twitterers had been planning to go, and although due to the harsh realities of spooniedom some people couldn't make it, I was pleased to meet up with @GentleChaos and @FunkyFairy22 at lunchtime. My PA, although employed directly by me, has been involved with Social Services for several years, so we decided that she would go and say hello to a few familiar faces in the halls while the three of us chatted. It was marvellous, we thoroughly put the world to rights. It's been years since I met new "internet people", particularly on my own, and particularly meeting females, rather than being one of a couple of incidental females in a male-dominated group. I'd like to do it more often.

Unfortunately on the Thursday morning I woke up with no spoons (expected) and an absolutely stinking cold (wasn't quite prepared for that). Each is making the other that bit more unpleasant. However, once I've shifted the cold and can breathe through my nose again, we should be full steam ahead for the wedding!

Good news

This post is not wedding related. And truth be known, I feel guilty about posting it at a time when cuts and reforms are playing merry hell with the lives of so many of my disabled friends.

I appear to have won at Social Services, and now I don't know what to do with my good fortune.

As part of Steve going back to work, I've been reassessed. Steve's new job involves a much longer commute as well as regular trips further afield, and that in turn means that there's less expectation on him to provide my care.

This is going to get complicated so first I have to explain about Direct Payments.

Direct Payments are paid into a bank account in my name and I am the only person who can access that account and distribute the money. All contracts are between me and the PAs or agencies who I choose to employ. This gives me control over my care. To give a simple example, I could decide to skip showering on a Thursday in order to 'carry over' enough time for a long bubble-bath on Friday.

What I can't do is take the money and spend it all on sweeties and computer games. Social Services closely monitor the account to make sure that it is only spent on items and services approved in my Care Plan. I can't invest it, and it doesn't even count as my money on my tax return. And once it's gone, it's gone - if I have long bubble baths every day for a fortnight and then realise there's no money left in the account to pay the agency for the rest of the month, that's entirely my problem and my responsibility.

Supposedly this reduces the admin costs for Social Services as they are no longer the first point of contact and no longer have to manage the carers or negotiate with agencies. They identify needs and then supply the money. Choosing the best way to spend the money to meet those needs is no longer anything they have to worry about.

So I've been identified as needing 45 minutes of help with personal care each weekday. I have some interviews (sales pitches) with agencies this week and hopefully something will be set up soon. Once it's set up, there's also scope for us to call in an agency carer should I need one when Steve's away from home for longer periods - even if we had to add the extra money privately, the 'account' would be in place.

They've also changed my social care. Previously I got money for the stated purpose of employing a PA for three hours a week to help me do "out and about" things I needed help with. This was about £30 per week - most of it for the wages of the PA, the rest to cover specified necessities like Employer's Liability Insurance, placing job adverts when I need to hire a new PA, that kind of thing.

Now, my assessment says I am at risk of social isolation (the internet doesn't count, who knew) and therefore eligible for two days per week of "daytime opportunities", but thankfully identifies that it would be inappropriate to send me to a daycare centre for two days per week. So what Social Services are doing, is taking the money they would spend on my daycare centre place, and giving it to me as a Direct Payment. It is rather more than £30.

We've identified that I will continue to employ my PA for three hours each week as a baseline, but after that, it's looking a bit blank, because I simply can't think of much to do.

This is apparently an indicator that I have already become used to social exclusion.

I don't just have to use it on PA wages. For instance I asked if I could use it for taxi fares to go to a knitting group or to a friend's house, situations where I don't need a PA sitting right there with me for two hours, but I need someone to make sure I get safely there and back. Apparently I can, as long as I get a receipt, and keep a log of the purpose of the journey (which must be 'social').

The best and worst of this system is that there's no list of approved uses. There couldn't be, because there's so many different things a person could do. I have to think of something I'd like to do, and then find out how much it costs, and then they'll tell me whether I can use my Direct Payments account for all, none, or some of those costs.

It's also a bit experimental. My Independent Living advisor tells me I'm the only person on her caseload so far with this setup. So no clues from that direction.

Ideas, anybody? So far all I've got is an Action Point of going to the library on Wednesday to see what clubs and groups and things are running in the area.

Stunt Bride and Groom, complete

Further to my previous post, I am pleased to present the completed Stunt Bride And Groom!



I'm quite pleased with how they came out, really. I think we hit the right level of detail. For instance the Stunt Bride definitely looks like a bride, but her dress gives away only the already-known facts about my dress, namely that it is white and that it is a wedding dress without a train. I am also happy to reveal that my full-size dress is not made out of felt. We considered making the dolls hair and glasses but decided that it was better to keep it at a completely non-detailed "concept" level.

I was wrong about the jacket being the most complicated item. I'd overlooked the facts that:

• The jacket is open at the front, whereas every other item of clothing would ordinarily be done up with zips or buttons. Except I don't have zips and buttons that small, so the clothes that needed to be done up had to be sewn onto the dolls. This involved a lot of mattress stitch and, for Stunt Bride in particular, an undignified experience with a teaspoon up her skirt.
  


• The dolls have metal poles up their bottoms which rather interferes with the proper fit of trousers. I think it took me nearly as long to properly stitch what Steve refers to as the "arse-fly" as it did to do all of the leg seams. However at least Stunt Groom won't get debagged at his wedding reception.

The dolls both balance nicely, Stunt Bride can certainly stand up for much longer than the real bride ever can, and the arms and legs and heads are still poseable, so hopefully they will keep the photography posse amused and we'll get some good pictures.

Meanwhile the happy couple are posing together in our living room, and it's making me feel really happy to look at them.

Edit 19:50 31/01/11 to fix link.

Stunt Bride and Groom

I’ve been stressing out a little bit about the wedding photos. With Steve and many of his friends being keen amateur (and in some cases, semi-professional) photographers, there are going to be hundreds, if not thousands, of photos taken at the wedding.

I don’t photograph well at the best of times - I always have my eyes half-shut, I’ve got terrible skin, my posture is awful, and I’m that kind of overweight that is noticeably flabby but still too skinny (and with too small a cleavage) to be able to wear the stuff at plus-size clothing stores that makes larger people look good. Steve also has a tendency to, in his words, "look dead" in photographs. We have many strengths as a couple but conventional attractiveness is perhaps not one of them.

Over the last year I have seen many, many wedding photographs. Some have been beautiful. Others have been hideous. The ones that scare me aren't the Big Fat Gypsy Wedding ones full of orange faces and enormous pink dresses, because the people in those photos have achieved the 'look' they were aiming for and the fact that I don't find it attractive is irrelevant. No, the ones that scare me are the ones where someone has tried to achieve a look and they haven't quite managed it. Cakes that cost a fortune but look tiny and forlorn. Venue decorations that make you think the venue probably looked better without. And above all, brides and grooms looking tired and miserable.

Looking through yet another set of ugly, depressing wedding photos, I turned to Steve and asked if I could have a Stunt Bride for the piccies.

He said yes. We formulated a PLN.

For Christmas, we asked my parents for a couple of those little wooden poseable artist’s models, which we now have. One is six inches tall and the other is five and a half inches tall. These are our Stunt Bride and Groom. Stage 1 of the PLN was complete.

The next phase of the PLN is to dress them in very rough approximations of our outfits (partly because future-mother-in-law will kill us both if I reveal too many details of The Dress). I'd been planning to get cheap "Barbie and Ken wedding" dolls clothes but then I discovered that dolls are generally bigger than six inches and that dolls clothes are Not Cheap. However I used to make clothes for my dolls all the time as a kid, so I decided it would be worth a try. Discussion with knitting friends brought me to the conclusion that the best way forward would be to buy some squares of felt (soft, durable material without a distinctive grain or bias, unlikely to fray, reasonably cheap to buy in small quantities) and take it from there.

I am happy to report that I have just finished making the Stunt Groom's jacket.


This was the most complicated item and the successful completion has put me in a very positive frame of mind for the rest of the project.

We will therefore have pictures of “the bride and groom” at all areas of our wedding, with all the unique features of our wedding, having a lovely time, without a spot, scar or cellulite wobble in sight… just in case the real pictures are too awful to look at.

I shouldn’t feel this much better for such a silly solution, but I do.

Wedding dress!

Short version for the easily bored: I bought my wedding dress. No, there aren't any pictures.

Long waffly version:
I wasn't expecting to have bought my dress already. Truth be known, I thought it was a process that would take months. But, I felt I should start that process sooner rather than later, so my Future Mother-In-Law (FMIL) and I decided that we would begin dress-hunting once she returned from her summer holiday. While we weren't averse to the idea of second-hand or internet-ordering, we felt it would be a sensible start to try on a few different styles and see what worked on me.

The first issue I had to sort out was the extremely limited access to bridal shops. I phoned all of the ones I could find listed locally. None of the ones in my home town were wheelchair-accessible and only one, maybe two, in the next town over were able to tell me that they had access. Not to be put off, I made August appointments with both of those. One of them cancelled, so eventually we just went to the one remaining shop, which was Eternal Bride in Warwick.

They were lovely. I don't think they were experienced with disability issues and it would have been tricky to get through the store if I was using a more typical bulky type of powered wheelchair, but they were friendly, polite, non-intrusive, and made every effort to accommodate me. I was impressed.

They even managed the Holy Grail of assistance - they asked me what I needed and then they paid attention to my answers.

We tried on loads of different shapes and styles of dresses from the racks and got a really good idea of what works well, and what I should avoid. Then I had a bit of a rest while FMIL and Debbie (the member of staff helping us) went upstairs to look through the sale dresses (three-figure price tags rather than four). They came back with about six dresses, all of which I probably would have chosen myself at that point. And once they'd been tried on, one of them was considerably nicer than the others...

Unfortunately it was a discontinued style so I couldn't simply plan to order it nearer the time, and, due to the fact a huge train skirt won't work with the wheelchair, it would have required some £150 of alterations on top of the not-inconsiderable price of the dress itself. I was tempted, but felt that I should not spend that kind of money without thinking about it, consulting Steve, and going to more than one shop. Debbie very kindly agreed to hold it for us for a few days and FMIL and I started frantically trying to find somewhere else to try dresses.

Since the biggest issue with the dresses in Eternal Bride had been the huge floofy skirts and trains, we decided that our best bet would be to try a department store. We figured this would carry outfits that were more "cream-coloured formalwear" than actual bridal gowns, and perhaps have a more modest price tag. Monsoon, for instance, used to carry a small range of dresses that would be equally suitable on a low-key bride, a grownup taking First Communion, or someone attending a prom. I'd already had a look around local department stores with this in mind, but hadn't found anything, so it was back to the phones. It seems that many department stores now only carry a bridal range at their flagship stores, but I was able to make an appointment at House of Fraser in Birmingham.

Advice: don't bother. It was all £1,000-plus floofy dresses with huge trains, and an added rather baffling feature was that many of the dresses had SHARP beading and sequins under the arms - I didn't even wheel anywhere but after half an hour of trying-on I had loads of angry red marks and scratches on my inside upper arms. Dejected, FMIL and I met up with Steve for lunch in the Bullring, where we spotted Sonique.

Sonique mainly do prom dresses, or to put it another way, they have a huge range of formalwear, in colours including white shades, many of which do not have trains and do not floof out by a metre or more. They're also that bit more affordable. And the staff know their stuff - rather than having us rummage through all of the hundreds of dresses in the store, the lady we spoke to listened to our list of features we liked and disliked and then picked two dresses off the racks and invited us to come and try them on.

Sonique are not champions of accessibility. Like every other store in the Bullring, they have level access built in from the word go, and they have kept their aisles uncluttered. However the changing cubicles are one-person size with no seat and solid swing doors, which meant that since I needed physical help getting into the dresses, I was basically expected to take my top off and then stand propped in the corner of a cubicle with the door open while the assistant got the dress over my head and did it up. I still had my jeans on underneath and I wasn't feeling very impressed...

... then I turned around, saw my reflection in the big mirror, and had the fabled "this is my dress" moment. While I stood there gobsmacked, stick in one hand and doorframe in the other, the assistant looped a matching wrap around my arms and it was perfect.

Trying not to get overexcited, but no longer so bothered about the lack of privacy, I got rid of my boots and jeans and carefully sat down in my wheelchair. It was still perfect. I could still move my arms. I could still breathe and lean and twist as much as I usually can and it wasn't at risk of tangling in the wheels. I stood up again. It was even the right length, and it didn't interfere with where I need my stick to be.

I tried on the other dress, just to be certain that it wasn't simply a case of me being relieved that I was trying on a dress that was comfortable. Nope. The second dress was nice enough as dresses go, but not WOW nice. I put the first dress back on. Miles better.

After a bit of consideration, FMIL and I decided that we'd tried on a truckload of dresses, this was the best one by far, we weren't likely to top it unless we got into the realm of full-on bespoke dresses and even then it wasn't guaranteed... so I bought it.

I'm not at liberty to disclose any major details about it (if Steve finds out what it looks like, FMIL will kill us both) although if anyone's interested, compared against a Dulux colour chart the nearest matching shade is "chalk burst".

I was a little bit anxious about phoning Eternal Bride to tell them I wasn't buying my dress from them after all, but they continued to impress me with her polite, friendly, professional approach and I really can't praise them enough. Even though it was Sonique who happened to stock the actual dress I chose, it was Eternal Bride, and particularly Debbie, who made wedding dress shopping a fun and accessible experience for me, and I'd recommend them to anyone.

Done/arranged/have a PLN:
Registrars
Venue
Food and drink
Photography
Bouncy castle
Balloon swords
Hair (sort of, I have a stylist but not a style) and makeup
Gloves (in progress)
Dress!

Still not even properly thought about:
Ceremony options
Rings
Invitations
All the flowers
Decorative balloons
Shoes, lingerie and jewellery
Nice walking stick
Table decorations
Venue floor plan