13/52

Late again - I thought, oh, Steve will be here for the four day bank holiday weekend, and then Steve was here for the four day bank holiday weekend and we were Doing Things and I didn't get as far as posting.

But, I did decide when I took it what this weekend's photo would be.



One of the Things we Did was move Jamie up to his proper high chair. Up until now, he's had a reclined bouncy seat that clips onto the top and that allowed him to be up at table with us for mealtimes even though he couldn't yet sit up or eat. Which has been nice, it's got him into the rhythm of mealtimes as social occasions and also allowed me and Steve to eat with two hands. But now, he gets to sit up properly, and he gets his own spoon too. Occasionally it even has a smear of something on it. We couldn't call it eating, not yet, but as you can see he seems to like his high chair and that has to be a good thing.

12/52

This week's picture makes me smile every time I see it.



It's the wide eyes, the happy surprised mouth, the blur of hands, and above all else, the confidence with which Jamie now enjoys tummy time, pushing himself right up, total head control, using his hands and kicking his legs. I'm putting together a scrapbook of photos (currently only just past Steve's paternity leave, although in my defence there's pregnancy photos and scans in there too, and each picture has a handwritten caption) and among the 0-3 months photos yet to be placed is one of my tiny little scrap of a baby, flopped over a banana-shaped tummy time pillow, looking (a) unimpressed, and (b) unlike a being capable of independent movement. It still bewilders me to think that only a few months and my milk has turned that baby into this increasingly strong little boy.

11/52

Or, Mother's Day 2016.

Steve has no great tradition of Mother's Day observance. A phone call or text message, perhaps. In my family, I usually send my mum a card and gift in the "box of chocolates" ballpark. Following our pregnancy losses, it became one of those things that repelled me and I would just try and order the chocolates while mentally holding my breath.

For my first Mother's Day as a mother, I'd be lying if I said it didn't mean anything to me but I didn't want to make a Big (and aggressively pink) Thing out of it.



So here's Mother's Day. Bed. Pyjamas. Packet of biscuits. Card "to the loveliest mum in the wide world". And my baby, rapidly morphing into my little boy, comfortable and happy in my lap and looking at me as if I am indeed the loveliest mum in the whole wide world.

I'll take it. :)

10/52

If there were ever any doubts about Jamie's paternity...



... I am declaring them quashed.

9/52

A silly one this week.



Our little family is feeling much better than we were, but still not 100%.

7/52 and 8/52

A late update for week 7 on account of illness. After a couple of weeks of soldiering along with what seemed like every cold going, I developed a full-on chest infection with a few less-than-pleasant extras, and spent last weekend - and most of the last week - in a battle to keep hydrated enough to continue breastfeeding. Steve and Jamie have also been struggling, although thankfully with not quite the same spectacular symptoms, and we're indebted to friends, my PAs, and our lovely neighbours, for keeping us going.

Yesterday seemed to turn a corner though, so I'm going to put last weekend's picture into this weekend's post.

7/52 Bath Time!



Full-on baths are currently a weekly occurrence for Jamie and it's amazing how it's different every time. The first time, Steve was terrified to drown him (we'd agreed in pregnancy that baths were domain of Daddy) and afterwards he seemed to all but disappear into the hood of this towel. At four months though, Jamie is more robust and Steve is more confident. He still doesn't quite have the hang of playing in the water but he does seem to enjoy it.

8/52 Not Well



This is what happens when Jamie is ill. I mean, if he's running a temperature or he can't cope with his snot or something then obviously there's crying and distress and vomit (and Jamie's a bit upset too). But once those things are settled down, it's cuddles all the way, which is cute until your arms give out.

6/52

For me, this week's picture perfectly encapsulates what Jamie is like at 3 - 4 months. Awake, alert, content, thumb in mouth, eyes wide open, and just a glint of amusement. I still can't say that he looks like Steve or that he looks like me, but I love that he looks like himself, like Jamie, a little person and a personality all of his own.

5/52

A more wakeful photo this week. Look at that head control!



At our antenatal classes we were asked to consider what attributes we would like our unborn babies to inherit/learn from our partners. I said I'd like our baby to be as inquisitive and curious about, well, everything, as Steve. It's one of the things I love most about him as well as one of the reasons I was sure he'd be a great dad. He likes investigating things and then shares his knowledge. Jamie isn't quite at the knowledge-sharing stage, but he is always looking around and taking things in.

4/52

Slightly late due to assorted family catastrophes... but this week's photo is another sleepy one. Well, sort of.



As you can probably see, Jamie is in fact wide awake.

This week was the beginning of the tentative effort to move from the little bedside crib in our bedroom to the Big Cot in the nursery. Overnight, Jamie will still be sleeping in our room for at least one more growth spurt. But to make the shift as non-traumatic as possible, I planned to start him having late afternoon naps in the Big Cot - overseen by the familiar Ewan the Dream Sheep and Monkey.

So far, it's been limited success only. The nursery is getting established as a safe, comfortable, quiet place, and Jamie hasn't been upset at all. He's cuddled up on the beanbag with me for a feed, then laid down in the cot, and... well... stared at me and Monkey for twenty minutes or more. Quiet. Calm. Content. But very definitely not sleeping! Meanwhile, my mind boggles to see my big strong three-month-old, twice the size he was in October, looking so very tiny-little again.

3/52

This week's photo is of Jamie having a cuddle with his daddy.



In the mornings, the Jamie-shaped alarm clock wakes up and has his overnight nappy changed, followed by First Breakfast (of breastmilk). Then there's a lovely sleepy interlude during which a much more comfortable Jamie chases the last of his zzzs, while mummy and daddy see about a slightly more adult First Breakfast (of tea/coffee, biscuits and ibuprofen). This photo was taken during that time.

I like this photo because despite both of them being really quite sleepy, neither of them are fully asleep and Jamie is genuinely cuddling Steve - in fact he was stroking him. I love that although I'm the stay-at-home parent, the two of them have a bond like that and that I get to watch it.

2/52

This week's photo is of Jamie in his crib by our bedside.



When we brought him home from the hospital, he looked absolutely tiny in here. With his feet at the foot of the crib as per the safer sleeping guidelines, his head barely reached the centre of the mattress! Now, at almost three months old, it seems to fit a lot better.

It makes me feel conscious of the fact that the crib is in fact a six-month rental, by which time he should have outgrown it, and we're halfway through that period already.

He has a bigger cot in the nursery, that should serve for the next couple of years as it converts to a toddler bed. Our plan for the transition is that Monkey and Ewan the Dream Sheep (pictured) will come with him to the nursery. But for now, this is basically what I see by my bedside every morning and evening.

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.

Noises

Noises that Jamie seems to like:

- Louis Armstrong, Ella Fitzgerald, etc
- The voice of the person on whose chest he is being held
- White noise (eg roomba, Ewan the Dream Sheep)

Noises that don't seem to bother Jamie:

- the doorbell or telephone ringing
- people talking in the same room
- fireworks

Noises guaranteed to wake Jamie up in URGENT and IMMEDIATE need of feeding and nappy changing and a cuddle and oh my goodness the whole world is about to explode:

- the pop of a tube of Pringles
- the scrunch of a packet of biscuits
- the click of mummy's dinner plate being placed on the table

Introducing Jamie

As planned, the bump was delivered to babyhood in mid-October. Internet, meet Jamie.



Born weighing 7lbs, he's healthy and happy. And perfect. Of course he's perfect. He has perfect ears and perfect long little toes and perfect enormous blue eyes. I want to write paragraphs and paragraphs about how brilliant he is in every way, and of course I don't have time, because he's a newborn, and I'm breastfeeding, and there's any number of friends and relatives to wrangle, and Steve's back at work, and babies make a lot of laundry... and honestly because for the last few weeks, if you gave me a choice between writing a blog post about my tiny baby Jamie, or actually cuddling him or playing with him or doing things he needs me to do, well, it's a no-brainer.



There's difficult times as well. Like when he decides to wake up and demand feeding NOW NOW NOW in the same minute as I've got my dinner on the table. Like when he projectile vomits all over the place at 3am. Like when I haven't felt able to take my pain relief because it makes me too drowsy to take care of him properly and I'm not managing to fully let go and trust anyone else to be the Awake Responsible Adult who will make sure I don't nod off mid-feed and suffocate him (particular fear, there).

But these are vastly outweighed by the good bits. In some ways, even the difficult bits are good. One of our friends watched me calmly dealing with an incident involving a variety of bodily fluids and observed that he'd rarely seen me so happy. I am happy. I'm happy because I know I'm good with babies, I'm confident about what I'm doing, I'm well supported by Steve and by my friends, and everything is going well.


What else to tell you...

The birth was by planned caesarean, which went well. We cannot praise the NHS staff enough - from the first booking appointment with the midwife at 10 weeks pregnant, to the theatre team, to the still ongoing postnatal care from the Health Visitor, everyone we've dealt with was professional and supportive. A particular mention has to go to everyone at Swan Ward at Warwick Hospital, from the lady with the tea trolley to the ward manager, they were compassionate and friendly and helpful. We thanked them all profusely and heard in response a lot of variations on a theme of "well, that's my job..." no. There's ways and ways of doing your job. Steve and I feel like we got absolute gold standard care, and never doubted that the three of us were safe.



Lovely though everyone was at the hospital, it was still a hospital so I was very glad to be discharged just 50 hours after surgery. Steve had a full two weeks of paternity leave, which we definitely needed. We went out several times, and since he's gone back to work, Jamie and I have continued to go out with PA support. Every time we leave the house Jamie seems to make new friends - in supermarkets, in cafes, in the library, in the park, always there are strangers marvelling at him. It's making me feel better to be out and about after so much of my pregnancy was spent confined to base.



The PA support is working out well. The golden rule is that the PAs Must Not Do Childcare. They must not, to give a specific example, change a nappy. But they can and do lift the baby onto the change table; if I have a moment and need to stop mid-change they can hold onto him and make sure he doesn't roll off while I pull myself together; and at the end of a shift they go through my "replenish list" to make sure that there are enough nappies (and cotton wool and wipes and cream and a fresh outfit and a few other bits and bobs) in various strategic locations within my reach to see me through until Steve gets home or the next shift starts.

Every day, I feel glad we did this, pleased with how it is going so far, and hopeful about the future of our little family.

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.

An Update

In my last few posts, I talked about three major obstacles to the baby preparations.

One was the difficulties of getting assessed for a suitable wheelchair. After my last post, a number of people gave me details of companies and charities who had been useful to them. Sadly when I followed up these leads, some weren't able to help, and others were unhelpful by choice, showing me the chairs they wanted to sell rather than the chairs that would meet my needs, and calling it an assessment.

Thankfully, this turned out to be the easiest situation to resolve. The experiences with the "assessors" convinced me that I might as well ditch my fear that going into a mobility showroom would leave me prey to unscrupulous salespeople. I called a local showroom, explained my needs, and arranged an appointment. When I arrived, the salesman had several chairs lined up that did meet my specifications. After a bit more discussion and measuring, I was having a test ride, which included seeing if my favourite one would fit in the car. It did. The salesman then encouraged us to take our time, go home, have a think, and phone him on Monday if we wanted to buy it... and a brand-new one was delivered by him to our house at the end of that week.

I'm gradually getting used to it and I think it's going to meet my needs well.

There was Social Services, where "my" social worker had gone off sick less than three months into my pregnancy. The refusal of Warwickshire Social Services to transfer my case to a different social worker "because she'll be back soon" meant that I had no support at all until my pregnancy was past the half-way point, at which stage it was conceded that the Duty Social Worker team could help out with my case if they had time. I saw a Duty Social Worker at 26 weeks pregnant, but at the time of my last post, I wasn't confident that it had gone well.

At 32 weeks and with my assessment still waiting to be seen by the decision makers, my Health Visitor decided to see if she could intervene in any way. She was told that "my" original social worker was due back in the office any day and would definitely call her back as a matter of urgency. Except of course that this was every bit as much a lie as it had been every time I'd been fobbed off with it during the Spring.

Then at 33 weeks pregnant, for reasons it's probably best not to speculate on, I was officially reassigned to the proper caseload of the social worker who had been the Duty Social Worker who had seen me almost two months earlier. A few days later, I was given a date for my caesarean section which will be at about 39 weeks. I'm not sure if this deadline helped - at 35 weeks pregnant, with four weeks of pregnancy remaining, I think my assessment for additional support during pregnancy was very nearly ready to be submitted to the panel...

On the bright side, the Health Visitor and the no-longer-duty Social Worker are liaising directly now, and I think the midwife might be as well.

Which means I'm free to worry about the stairlift. At the time of my last post, after the delays caused by the absent social worker situation, we had sped through the assessment process thanks to a helpful and super-efficient OT and were awaiting a quote, which arrived, as it was supposed to, just before 28 weeks of pregnancy.

We signed, wrote a cheque for a deposit of over £2,000, and got it back to them next-day. According to the contract, this meant installation would happen within 6-8 weeks - so at the very latest, before 36 weeks of pregnancy (or "well before the end of September" for those of you who prefer a traditional calendar). It was cutting it fine, but it would be okay.

We were quite surprised to then be offered an installation date in the middle of October, or 39 weeks of pregnancy.

There were two problems with that.

One was that it was 3 weeks over the maximum 8 weeks promised in the contract, which really is not good enough when you are forking over five thousand pounds for essential equipment. I signed that contract on the understanding that my stairlift would be installed within the timeframe specified in the contract.

The other was that the date they were suggesting was the actual date for which my caesarean is booked.

After a lot of phone calls (which is always me phoning them, because their inability to stick to their own suggested timescales extends to calling back when they say they will), they have managed to rearrange for installation to happen in the first week of October. This is still breaching the contract - but I don't have the choice to make a big deal about that, because I need a stairlift in place before the baby gets here, and it is too late to get one from a different provider.

I am in my final month of pregnancy. I am supposed to be thinking nice, nurturing thoughts, and doing gentle exercises, and nesting. If I was at work and experiencing this kind of stress, I would be advised to start my maternity leave now. But there's no maternity leave from this situation.

Wheelchairs

As most people who know me are aware, I currently have Alber E-Motion M15 power assisted wheels and I have loved them for every minute of the five years I've had them.

I was incredibly fortunate to get help from Access To Work in being assessed for and part-funding them, and even more fortunate that being self-employed and working from home I was permitted to use them as much as I needed to. They're not categorised as being for my personal/social/leisure use as the assessment was done purely with my work needs in mind, but at the same time, no one expected me to remain housebound/struggle to walk/submit to being pushed/use a badly-fitting generic non-powered wheelchair/etc when I have a properly-assessed-for power-assisted fitted wheelchair that is ideal for my needs sitting right there in my house.

Predictably enough, with pregnancy my wheelchair needs are changing. My wheelchair as fitted five years ago is becoming increasingly uncomfortable to sit in, and my stomach muscles are no longer strong enough to allow me a proper push, especially going uphill, and the increasing size of the bump means I can't lean forwards at all. Even on ideal terrain, such as the absolutely flat smooth surfaces in my local supermarket, I still have to stop and lean back when the baby decides to have an energetic wiggle.

I'm only going to get bigger for the next three months, and my stomach muscles are going to keep loosening and stretching, and then once the baby is born I want to wear a sling rather than trying to negotiate fixing a pram to a wheelchair (or worse, having a PA pushing my baby in a pram alongside parents with their babies in prams while I am baby-less, self-propelling and trying to pretend that I'm the one of us who belongs in the group of parents walking around the park with their babies), not to mention that it's going to become even more important to conserve my energy so that I can meet the baby's needs... I'm going to need a fully-powered wheelchair.

We knew this would be the case before we started trying to conceive, and as such we saved up to be able to purchase a fully powered wheelchair when the time came. My needs aren't especially high, my body is not particularly fragile or unusually proportioned, and of course I won't be sitting in the chair all day every day. But, with the baby in the mix, we don't want to buy something random and second-hand - we were always clear that we'd want it from a reputable source, covered by warranty, and with servicing available locally. The price range we were expecting was between £2,000 and £6,000.

One problem is that the unexpected £5,000 we already have to pay for the stairlift, plus a rent rise and a couple of other unexpected factors that aren't disability or baby related, has left us with rather a different financial picture than we'd imagined.

A bigger problem, though, is that I can't get an assessment - and am loath to just trundle into a random mobility supplies shop and ask a salesperson to assess me, in case what they decide I "need" turns out suspiciously close to what they will make the most commission on or are desperately trying to shift out of their stockroom.

The NHS Wheelchair Services position is that powered wheelchairs are only prescribed for people who need a wheelchair to move around their own home. This is obviously not the case for me. They also can't prescribe a self-propel wheelchair to someone who can't self-propel, and attendant wheelchairs are somewhat dependent on *having* an attendant.

This issue couldn't be tackled ahead of pregnancy because resources are quite in-demand enough for situations which already exist, without being done pre-emptively for situations which only "might" occur such as conception of a baby. But my GP and midwife have, since week 10 of this pregnancy, tried every route they can think of, up to and including obtaining the Wheelchair Services referral form and then writing all over it that while we know WS won't fund or prescribe a powered chair for me, maybe they could just *see* me and *advise* on what sort of chair I should be privately purchasing... nothing. The most useful response we've had is "well, whoever assessed for her last chair can assess her again," except of course that was Access To Work and even if they hadn't been hideously defunded in the last five years, my non-work needs for late pregnancy and early parenthood are not their remit.

The Social Services OT also tried, but again, all roads lead back to NHS Wheelchair Services, who refuse to so much as see me.

Following a Twitter conversation with a friend, Scope tweeted to me that I could try the Mobility Trust. I've written to them, but have not yet heard back and I believe from the information on their website that they are more about helping people who already *have* assessments out of the funding hole, rather than helping people get assessed in the first place. Steve and I know that despite our current financial upheaval and zero assets, we're still relatively privileged in that we have an above-benefits-level income and zero debt, and as such probably don't come under the charity umbrella.

The best result I've been able to obtain is that one morning, after an hour or so chain-phoning this or that organisation, explaining the predicament, and being told "not our remit, you might want to try (person) at (organisation), their number is..." I actually got to *speak* to someone at the local Wheelchair Services. They still refused to help with an assessment, but they did give me the name of the supplier they usually use, and told me that they regarded that supplier as being a trustworthy and established local business who would assess my needs without a rampantly profiteering head on. It didn't quite work out that way. I made an appointment to go in and discuss my needs and was proudly handed a couple of PDF printouts from manufacturer's web pages, for incredibly expensive made-to-fit support-everything bespoke powerchairs. The salesman seemed to lose a bit of interest when I said that neither my needs nor my budget were quite that high, although he did offer to get one or two powerchairs in and then call me so that I could test them. This is not the same as discussing my needs and preferences and figuring out which of the chairs on the market might best suit me and then getting *that* powerchair in for me to try. It's fine as a fall-back option, but this is an investment of thousands of pounds of our own money, we'd really quite like a few more options and a little bit of guidance!

Part 1 Part 2

Stairlift

I've been supposed to have a stairlift for quite some time now. But what with the insecurity of living in a rented house, and sharing that house with a non-disabled person who likes to run up and down the stairs unimpeded, we never went ahead with it. I carried on going up stairs on all fours, coming down stairs on my bum, and sitting halfway up/down the stairs having a little rest when necessary. It was okay. I'm under 35 and not exactly frail, I've got solid young bones and plenty of padding on them. When I fall down the stairs, so far nothing worse has happened than some cuts, bruises, grazes and/or carpet burn, maybe a bit of damaged clothing, and whatever I was carrying taking a brief flying lesson.

As you can imagine, being pregnant - having a baby on the inside for now and knowing that once the baby is on the outside I still need to get both of us up and down the stairs safely - changes the goalposts somewhat. All of a sudden I'm a lot less flippant about falls. On top of which, as my bump gets bigger, it becomes physically more awkward (and eventually will be full-on impossible) for me to go up on hands and knees or rest halfway if I need to. Steve and I agreed that pregnancy would make us concede to the stairlift.

(At this point well-meaning people tend to sagely advise us that we should move house to a bungalow. Leaving aside the implied insult that we are too stupid to have thought of such a thing, the trouble with bungalows becomes apparent when you try to actually *get* one. Social housing bungalows are too small, privately rented bungalows are too expensive, purchasing a bungalow is out of our reach, and all types of bungalow are very rare. We do search occasionally, but in every category those few that come up and look like they might meet our needs tend to, on further investigation, be on special zones or estates that exclude us with rules stating they are only available to over-55s or that children are not permitted.)

The delays and difficulties with Social Services meant that I was 21 weeks pregnant before the Housing OT Gatekeeper phoned me - and promptly advised that a stairlift would take at least six months to sort out, which isn't a useful answer to someone who needs to be baby-ready in four months. Happily I was able to persuade her to refer it upwards, with the result that she phoned me the next morning and I got an appointment to see the OT at 23 weeks.

The OT was lovely, as OTs tend to be. Along with various other things, including a referral to a specialist OT service for disabled parents elsewhere in the country, she agreed that a stairlift was required ASAP, and since it was therefore a prescribed item rather than a personal choice, gave us a financial assessment form.

Financial assessments are conducted differently by different departments. They all have different criteria. For example, at present, I'm not eligible for welfare because as a household we have earned income - but I don't have to pay for my basic care package because that is calculated on savings, investments, assets, property, trust funds, etc, with our earned income from our current work being disregarded. For a Disabled Facilities Grant, which is what would normally pay for a stairlift... everyone had assumed that we'd be eligible, but it turns out we're not eligible due to Steve's earnings.

Which means we (meaning he) will have to fund the stairlift privately.

Which will be about £5,000.

There's no choice though. We don't have a downstairs loo and there's nowhere we could put a commode downstairs, therefore if we want me to be able to use the loo with hygiene and privacy, which in the UK is considered a pretty fundamental necessity for anyone, let alone a pregnant woman or new mother, we need a stairlift.

At 26 weeks the OT came back with a couple of engineers in tow to measure things and pull faces, and the proper final itemised quote should be with us by 28 weeks.

They tell me there's then a 6-8 week wait after I get the quote, confirm the order and stump up the deposit before work can start. The particular parts for my particular measurements and prescription need to be shipped in and then of course the relevant engineers must be booked. That will bring us to 36 weeks or as near full-term as makes no difference, or to put it another way, I might end up using a bucket in the lounge after all, or trying to find the money to allow me to spend what should be the "nesting" period in an accessible hotel room. I guess the best case scenario is that if I go into early labour, they might not be able to release me and baby from hospital until the house is habitable.

That the delays and heel-dragging of social services in the first half of my pregnancy has resulted in my basic predictable needs for the final stages being cut this fine makes me even more upset than the money aspect.

Part 1 Part 3