Monday 31 December 2012

Dear Arthur

Dear Arthur,

If I'm honest, I'm a bit jealous you were born in 2012. I mean, since when has a year been so eagerly anticipated? And what year is going to go down in history like this one? Even when you're an old man, mention "twenty twelve" to anyone, and they'll know what happened then. At least I like to think they will.

And, what's more, being born during those Summer weeks. It's really quite special.

2012. The year of the London Olympics and Paralmpics. But as the next generation lit those 204 petals on the night of Friday 27th July, we were awaiting a quite different next generation.

By the time of Team GB's first medal on July 29th, although we did not know it, you were on your way (and Daddy was on his way to London!) It was a time for pride, for patriotism, for sheer celebration of life.

But Monday 30th July 2012 at 3.10am stands out for me, although all Olympians would surely have been tucked up in bed.

2012. The Queen's Diamond Jubilee. And next year that family will celebrate a whole new generation. Around the time of year you were born, it would seem.

2012. The year the world lost some great people: Neil Armstrong. Clive Dunn. Patrick Moore. But were many great people born in 2012? We're yet to see. Will you be one of them? That's up to you.

It hasn't been an easy year. A year which started with me, 8 weeks pregnant, in bed and asleep on the stroke of Big Ben. I knew it would be a year of great highs. But I couldn't imagine the lows. March 15th and June 29th were to be the deepest of these. Not to mention the sea of uncertainty between October 13th and November 12th.

But I couldn't have imagined the highs either. No new parent can. That amazing journey of learning and loving in a relationship with a new person. Those first smiles. Seeing that personality develop.


What does 2013 hold? Funnily enough, those dark dates of March 15th and June 29th are already filled in on the calender. On March 15th we will be heading off to a weekend to spend time with other families of babies and toddlers with spina bifida at a Shine Charity weekend away. I've no doubt it will be a weekend of fun and laughter. It shows how far we've come. On June 29th I have the privilege of being bridesmaid at the wedding of Jen, a dear friend, your godmother. It will also be the eve of my ordination, taking all our lives in a whole new direction.

Anyway, sorry for the sickliness and the cliches. At least I didn't mention that 2012 was the year the Snowman and the Snowdog came out, otherwise I'd be whimpering. Oh, I just mentioned it.

Well, Happy New Year Arthur. Wishing you a happy and healthy 2013.

Mummy xxx

Friday 21 December 2012

10 Reasons why I am not the Archbishop of Canterbury

I haven't blogged for absolutely ages. Not since THAT VOTE actually. It seems silly to dedicate an entire blog post to it, with nearly a month gone by. I've got various things I ought to write about, but rather than make them a collection of unrelated paragraphs I think I'll structure them around a tenuous framework.

10 reasons why I am not the Archbishop of Canterbury

1) I am of the female gender. Fortunately, I have no career aspirations in this direction (and I'm not just saying that in the "I couldn't possibly ever be a Bishop, but if God ever wanted me to how could I argue with God?" mock-humble way. See the final episode of series two of Rev!) That level of management and politics would bore me, and I couldn't imagine not being directly involved with a specific worshipping community. So when I approach the Woman Bishop issue, I approach it as would anyone, male or female, clergy or lay, who wants to see equality in their church. If we lack people of both genders, as well as all races, ages and sexualities, throughout our church, we lose some reflection of the Kingdom. That's my opinion. Nothing more, nothing less.

2) I only pretend to be an Academic. I was jolly pleased a couple of weeks ago to get a higher-than-expected mark in my most recent MTh essay, but I'm well aware that I'm a master of jumping-through-hoops rather than a master of theology! I'm also entirely realistic that my next essay marks won't be nearly so high because...

3) I don't seem to have any time! Archbishop Rowan manages to be an Archbishop, an academic and write quite good poetry. It's all I can do to look after a baby 50% of the time while keeping myself and Mr A fed. Not to mention the never-ending battle to leave the house in mostly clean clothes that mostly do not have traces of baby bodily fluids on them.

4) Actually, having said that, my eyebrow care is better than the average Archbishop.

5) I'm still working out what I think about, well, everything. Two weekends ago we had Arthur baptised. This came at the end of a themed study week on Liturgy, including most of a day on Baptism. As I mulled over, academically, what I was to put my small son through at the end of the week, especially the sacramental aspects, I realised that many of the reasons I was doing it might easily be termed 'folk religion'. A major reason was to make a public commitment to bring Arthur up in the knowledge and love of God. So far, so good. But a huge aspect was simply because, well, we're over the moon he's here with us - I don't think this can be found anywhere in baptism theology!

6) Talking of, Arthur had a really superb Paediatrician's appointment a couple of weeks ago. Of particular interest, she could see nothing wrong with the reflexes in his legs and feet. A little brisk, perhaps, which could mean stiff legs, but to me this sounds better than floppy legs. She also recommended he goes onto solids, which he's been really enjoying. She complimented his alertness and good tracking eye movements. This came off the back of a perfect kidney scan, and a urodynamic assessment which Arthur became the first baby in the memory of our very experienced urology nurse to sleep through! With all that has happened this year, it's lovely to come to the end of the year on such a high. (I'm aware this has nothing to do with me not being the Archbishop, so it looks like the framework is crumbling already...)

7) I'm about to be appointed to a Title Post, but it isn't the Archbishop. That's Julian Welby. Still having to be schtum about where I'm going.

8) I've never been to Canterbury. Looks nice though.

9) I am just toooo excited by Christmas I would hardly be able to maintain the decorum required of an Archbishop! Honestly, first Christmas with a baby is going to be GREAT!

10) Insert reason 10 here. Happy Christmas!




Sunday 18 November 2012

Tales of the Unexpected

Arthur is out of hospital and does not have a trachy!

This is something I simply wouldn't have believed possible as I wrote my last blog post. As planned, the  breathing tube was taken out on Monday 5th November and, as expected, he started wheezing again. The trachy was immediately scheduled for Thursday 8th November, and the medical staff told us their priority was just keeping him going without a tube until the trachy took place. And then... he just started getting better.

What do I think about miracles? I'm not sure. I think I've mentioned before that I've often felt awkward about the idea that healing happens for some people and not others, or happens more for people who are being prayed for. But, to me, Arthur's whole journey throughout hospital and out the other end has been a miracle. All the decisions that have been made, the treatment he has received, the treatment that has been withheld. It's been a complex tangle of strands which have somehow led to Arthur coming out of hospital on Monday with a fully operating shunt which has healed so quickly, no trachy, and a wheeze which is a tenth of what it was and improving every day. Arthur's feeding and catheter regime, which Paul and I have been concerned about since his birth, have also been reviewed since he went in, and we're now on a much less demanding regime (catheters every 2-and-a-half, rather than 1-and-a-half hours) which is wonderful.

It has been so, so unexpected. In the time he has been in hospital we have seen glimpses of God in other places too. We've found he has been added to prayer lists at churches and theological colleges far and wide, by people we do not know. Friends old and new have been praying. People have been generous in helping us out. We received some anonymous money through the door which paid for a tank of much needed fuel, and another donation from my childhood church. I've messages mounted up in my Facebook inbox which have brought tears to my eyes (and I really must reply to...) Times like these bring out the very best in people, and we are so fortunate to be in the place we are with the friends we have. I've mentioned previously what a profound influence our time in hospital has had on both Paul and I, and that will stay with us our whole lives.

It has been so, so unexpected.

From one unexpected thing to another. Arthur's illness has brought about a rather interesting quandary: is the curacy which we have been exploring, and provisionally accepted (but not yet signed on the dotted line) going to be practical for us? If a similar situation happened this time next year, and we were in Devon, what would happen? Well, I'd have made that phone call that Saturday morning, the ambulance would have taken us to either Derriford or the Royal Devon and Exeter hospital, and as soon as it emerged that he needed to be in a Paediatric Critical Care unit, with Neurosurgeons on hand, he would have been transferred to Bristol Children's Hospital, over 2 hours from our proposed Curacy.

I mentioned this to one of my tutors a couple of weeks ago, as well as the fact that our families are nearer to Bristol, and she said "well, why not explore other options?" Within 3 days I had been released by the Exeter Diocese and transferred to Bath and Wells. Exeter kindly agreed to keep the seaside Curacy I wrote about open, should there be nothing suitable in Bath and Wells. It all felt so good. And then Bath and Wells sent me a Parish Profile for a Curacy.

Geographically, it was great. But it wasn't the ministry I was expecting - it was an Urban Prioriy Area, and an area has a reputation for having high crime and multiple deprivation. It looked exciting, missionally, but not a good place to live. I asked Bath and Wells if they had anything else, but they said I had to go and look at this one first. So we went yesterday, just to show willing, just to jump through a hoop that might get us to the right curacy.

And, unexpectedly, it was perfect. A lovely incumbent, a warm congregation, a community who really didn't seem to be entirely what their reputation stated, exciting things happening missionally, some very nice countryside nearby. Paul and I agreed that this was the first curacy we have looked at (and, of course, it is the third place we have visited) where we have felt a very genuine and profound sense of calling.

Completely unexpectedly.

Wednesday 31 October 2012

Intensive Care

Day 19 in the John Radcliffe hospital...

Well, here's a brief chronological summary of developments since my last post.

22/10 - Arthur's Consultant Neurosurgeon overrules his colleague's assessment that the vocal chord palsy is being caused by a kink in the brain stem and cancels the CT scan. He also doubts the Arnold Chiari malformation is anything to do with it. Neurology's conclusions are summed up - "it's probably neurological, but we're big enough to admit we don't know what's causing it." Intensive Care extubate (take the tube out of) Arthur and he just starts wheezing again so they put him back on the breathing machine.

23/10 - ENT schedule a tracheotomy for 25/10 and send down their respiratory nurse to talk us through it. We discover that managing a trachy involves changing the trachy straps daily, changing the tube itself weekly, and clearing the tube using a pump several times daily, often several times an hour. Intensive Care take Arthur off the breathing machine but keep the tube in to ensure his airway is clear and drop the sedation, and he manages perfectly. This is pretty much what a trachy will be like, apart from the tube is entering through his nose rather than his neck.

24/10 - With the Trachy scheduled for tomorrow, Neurology suddenly re-enter and announce that there's a small chance the problem may be caused by Arthur's borderline hydrocephalus, and ask us if we would like them to try putting in a shunt (a tube in his head which drains off excess fluid). We mull over this - a shunt is non-reversible but is a smaller operation than a trachy and should (in theory) just sit there without needing any day-to-day management. We know that shunts can get blocked or infected and fail, but we decide it is worth a go. Neurology announce they can do it today, so Arthur is prepared for theatre. An hour before the operation is scheduled it is discovered he has an infection, so surgery is postponed until 29/10.

25/10-28/10 - We wait. Arthur is no longer under sedation and is normal, apart from he has a tube in his nose. If anything, he is happier than normal, as he can breathe!

29/10 - Arthur has his shunt operation. He is in theatre for just over an hour and returns with an inch-long c-shape wound at the back-right of his head, and another wound on his stomach. There is a lump behind his right ear where the valve is sitting. He is drowsy, but awake.

30/10-31/10 - We wait again... Arthur is awake and slightly grumpy, possibly he is in a bit of pain from the surgery. He bestows smiles on the Urology team who are monitoring his catheters while he is in hospital. By 48 hours after the surgery his head is half a centimetre smaller and feels a different shape. His lazy eye is gone, and he can already track moving objects better. He is sleeping with his eyes fully closed for the first time in his life. He will be extubated again on 5/11 to see if the shunt has improved his breathing. We are hopeful, but realistic that the chances are that it won't and he will need a trachy.

So that's about it. Paul and I are exhausted and spending far too much money on diesel and hospital food, but are pretty relaxed about the whole thing. I'd always imagined intensive care units would be dark, tense places with earnest medical staff moving silently between patients hanging between life and death. Perhaps an adult unit is a bit more like this, but the paediatric unit at the JR is an absolutely smashing place. The nurses are incredible and exchange friendly banter all day. The other parents are generally fantastic and we've made a few friends, including a couple whose son is 2-and-a-half weeks older than Arthur and has been in hospital all his life. Despite having lived in the hospital for 16 weeks, they are unfeasibly chilled out - an inspiration.

I am so, so lucky to be here at Cuddesdon. Martyn (the Principal) has visited us several times since Arthur has been in hospital. Morning and Evening prayer have been a write-off, but no-one has put pressure on me to do anything I can't do. I've managed to attend most of my lectures - I'm lucky to have Paul around to take his share of the hospital duties. The people at my placement, Benson, have also been tremendous, especially my placement supervisor John.

A few people have asked us when Arthur's likely to come home. The truth is, we don't know. If, when he's extubated on Monday, they find that the shunt has somehow cured his vocal chord palsy (unlikely, but possible) they'll probably keep an eye on him for a few days, and if things are good he could be home at the end of next week. If (more likely) there is little or no change he will be scheduled for the trachy, probably next Thursday 8th November. If all goes well and there are no infections or complications he will stay in hospital for 2 weeks after the trachy, so will be coming home on 22nd November. But we've learnt not to hang on definites, so we're assuming he's in for the long haul, and if he's out earlier, that's great!

Saturday 20 October 2012

Breathing

Well, it turns out that my description of laryngomalacia in the last Blog post was a herring of the red variety. It's all become a little more complicated...

Those of you who are au fait with my Facebook account will know that it's been a rather traumatic week for Arthur, Mr A and I. It all began last Friday night when Arthur's apparent laryngomalacia got a bit scary. He was doing this horrible stridor breathing even when he was at rest, and seemed to be quite distressed by it, sucking in his chest and arching his shoulders with every breath. Grainy video evidence here...

 

I slept him in our bed next to me on Friday night, just to keep an eye on him. On Saturday morning he still seemed pretty bad so I rung the regional out-of-hours service to see if I could get a GP's appointment.

Having answered all the questions fairly positively - "yes, he's conscious", "no, there isn't any blood", "no, he's never stopped breathing" - I thought they were going to remind me that laryngomalacia wasn't dangerous and tell me to stop worrying. However, they decided to send an ambulance, despite me protesting that it really wasn't necessary.

The Paramedics arrived and, after taking one look at Arthur lying on the bed in his nappy, crying and wheezing, instructed me to wrap him in a blanket and bring him down to the ambulance immediately, while Paul packed an overnight bag. We rushed round the ring road with the blue lights at 100mph (or so it felt) and soon arrived back at the good old John Radcliffe where Arthur was taken to the resuscitation room and surrounded by about 10 doctors and nurses while I sat on a chair in the corner muttering about laryngomalacia and how it isn't dangerous.

Having had a nebulizer and some steroids, he still wasn't calming down, so I suggested some milk might chill him out a bit, which of course it did. He was taken next door to the High Dependency unit to be kept an eye on. Some ENT doctors came down and agreed it was probably laryngomalacia which had been aggravated by a cold, a chest infection or croup, and he would just stay on High Dependency while he got over this episode.

But, of course, he didn't get over it. On Tuesday he suddenly took another turn for the worse and the High Dependency nurses called for ENT as an emergency. He was rushed into theatre to be intubated (a procedure where the patient is put under a general anaesthetic while a tube is put down their throat which will breathe for them. When they come round from the anaesthetic they are heavily sedated so they can tolerate the tube). He was transferred to Intensive Care.

While they were in the process of shoving things down the anaesthetised Arthur's throat they also stuck a camera down there to see what was going on. Surprisingly, he doesn't have laryngomalacia at all, but something called 'vocal chord palsy', where something in his brain is putting pressure on the vocal chords and squeezing them together. The surgeon suspected that the cause of this was his Arnold Chiari malformation of the brain and ordered an MRI to investigate.

After a few days of waiting, he had the MRI yesterday and we got the results today. Paul and I were confident that the MRI would show up the Arnold Chiari as the offender and we would be offered something called Chiari Decompression Surgery which is pretty effective in curing this.

However, we were disappointed that it doesn't seem to be the Chiari at all, but a kink in his brain stem which is related to the Chiari but isn't the Chiari itself. He is having a CT scan to confirm this on Monday. The on-call neurosurgeon explained that they would also have a multidisciplinary meeting on Monday to see what could be done, but the likelihood is that they will do nothing as the surgery is deemed too risky if the only effect of the kink is difficult breathing.

So, of course, the question is - if neurology do nothing about the kink, how is young Arthur to breathe? The answer came in the form of an ENT Registrar who explained to us today that, in the circumstance that neurology couldn't or wouldn't do anything, they would consider performing a traciostomy.

While the thought of the poor chap having to manage a tracheostomy as well as catheters and weak ankles doesn't fill me with joy, Paul and I have had a good think about it tonight and we've decided it's far more preferable than serious neurosurgery. Having looked it up online, kids who have tracheostomies for neurological problems often only have them for a few years, so it might only be a temporary thing.

He's been in hospital for a week now, and unconscious for 4 days. As far as we're concerned they can do whatever they want to solve the problem and get Arthur (metaphorically) back on his feet. We just want to get the little chap home really.


Wednesday 10 October 2012

On Sacrament and Sound Effects

Hello friends!

Arthur has developed a condition called Laryngomalacia, defined by Wikipedia thus -

Laryngomalacia (literally, "soft larynx") is the commonest cause of stridor in infancy, in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction.

Essentially what it means is that Arthur now breathes with a very loud wheeze. He does this all the time, apart from when he's feeding, drowsy or asleep. Apparently it doesn't hurt him as it's just his larynx moving as he breathes, but it sounds very much like he's gasping for breath. It's not dangerous, and therefore doctors rarely offer any treatment. It comes on typically between 6 and 8 weeks (Arthur was 7 weeks when it started) and tends to go away by the time the child is 2 years old.

Let's face it, given that he's at high risk of developing both hydrocephalus and kidney damage, you wouldn't have thought harmless noisy breathing would be much of an issue. But it's really getting me down. Laryngomalacia isn't at all related to spina bifida, so I'm inclined to think "hang on, this isn't fair, haven't we got enough to deal with?" but that's just selfish and I know it.
 
The one nice thing (if there is a nice thing...) about spina bifida is that it isn't obvious. This sounds slightly odd coming from me, because I'm not ashamed of his disability, but hear me out... It's been wonderful to just be able to walk round town and for people in shops to say "oh what a lovely baby." And I get into a bit of a conversation with them and don't even have to mention that he's disabled. Now people tend to say "oh dear... is he ok?" and the conversation is completely different.

What  we're really worried about is church.

Last Friday Arthur threw a huge wobbly in church (screaming, not wheezing) and Paul had to take him outside. Having to take a crying baby outside is just one of the realities of taking a baby to church, and it's fine. But Arthur now wheezes for much of the time he is awake and it's very loud - Paul and I sometimes struggle to have a conversation over it. Church is such a difficult one because, ideally, everyone should be able to go to church. After all, we wouldn't ban people with learning difficulties who make spontaneous noises.

But the reality is that people like silence in church. It's about finding peace, and we often like quiet to do that. A child who screams and is swiftly taken out by a parent is one thing. A child who wheezes loudly with every in-breath is another. And even if people say they don't mind, it stresses me out. that he's being so disruptive

I'm not sure if I'm going to take him to College Eucharist tonight or leave him here with Paul. Depends if he's asleep I suppose.

Tuesday 2 October 2012

Morning has Broken

It's 6am and I'm blogging. Yup...

His Lordship has lately decided that 5.30am is the time he'd like his breakfast (Arthur, not Paul.) Admittedly it beats 3am or 4am, but at this time of morning there's really no point in going back to bed before morning prayer, so I'm having half-an-hour of computer time and am spending it writing a blog.

So, term has started again, although you'd never know it from my - ahem - busy schedule. I have decided not to do any optional lectures this year,as I think it's probably far more important I spend time with Arthur in these formative months than sit in lots of lectures. Therefore, my schedule consists of a half-hour preaching workshop on a Monday and an hour-and-a-half placement presentation on a Friday. Plus an hour of College Group on a Wednesday and morning/evening prayer.

Actually, it's really nice to have a little bit of a routine (morning/evening prayer and meals) but enough to be manageable. It feels like everything has fallen into routine of late, including Arthur's care.

The catheters have continued to be extremely stressful, and I admit I've had quite a few down days thinking about them. The thing is, getting them wrong and allowing large amounts to build up in the bladder is extremely dangerous - kidney failure is the biggest killer of spina bifida children, or so I'm told - so every time we have a big reading I throw a bit of a wobbly. But I think we've got it cracked now, as we've worked out that if we cath him immediately before a feed and again precisely 1 hour after the feed the volumes stay below 50ml. We'd prefer 40ml, but 50ml is ok.

We've also recently acquired some new overnight catheters which are hideously complicated and involve snapping a glass vial and injecting purified water into a balloon which expands in the bladder. Complicated, but at least they stay in overnight and don't fall out like the old ones did.

I'm feeling weirdly guilty about how much we're costing the NHS. His catheters alone cost £15 per day (£5,475 per year). Of course he's worth it, it just feels odd being so reliant. Paul reminds me that the British taxpayer is probably more worried about their money supporting chain-smokers with lung problems than they are with supporting a little baby with needs. I think I'll just try not to think about it.

Other concerns include feeding (have switched to formula due to catheter 'what goes in must come out' scenario, which is guilt-inducing but has made me more sane), a dramatic wheeze and a lazy eye. All in a day's work...

Still, on the good side, Arthur is now tracking objects with his eyes and smiling at Mummy, Daddy and his Red Cow (yay!) so developmentally he's spot on. It's so wonderful to see him responding to stuff.

Today I've really got to start reading for my dissertation. I handed in my African essay on Friday, so starting the dissertation proposal is top priority. I loved writing my undergrad dissertation - it's great to be able to really get into a subject - so I'm looking forward to starting this one. I also have to meet with my tutor and agree how many evening prayers a week I'll be able to attend. Late afternoon is Arthur's scrotty time, so hopefully I won't be expected to go to all of them. I'd feel a bit bad about letting Paul cope with the screaming every single day.

Well, it's probably time for me to get myself into some sort of presentable state for morning prayer. Having consumed his breakfast his Lordship is, of course, asleep again. Hard life being a baby...

Sunday 2 September 2012

A Seaside Parish

Good news folks! My Curacy is officially sorted. Actually, that's a lie, it's not 'officially' sorted until I sign something, so I still can't blog about where it is (lest an unwitting congregation member stumble across this blog... not that that's likely but there we go!) We've been on a second visit and met a variety of key members of the team ministry and congregations and everyone is happy, including us.

The one little clue, which I have revealed in the title of this post, is that it's a parish by the sea. I think this will be a lovely environment for Arthur to grow up in. I'm already imagining summer's evenings mucking around on the beach, sandcastles, ice creams, walking along the prom with the pushchair etc. etc. The churches look great, a real mix of traditions from catholic to evangelical, both town and rural. The training incumbent is absolutely super and I think we'll get on really well. All in all, a really positive prospect - can't wait!

But there's still a year of college to go, and the start of term is rapidly creeping up. One thing that's really on my mind is my dissertation. Cathy, the MTh tutor, suggested a while ago, in the middle of a conversation about the then pre-natal Arthur, that I might want to write about disability. This seemed like a sensible option. After all, it's meant to be a degree in Applied Theology, and what could be more 'real life' than the theological questions I was already asking? Back at that early stage I was asking: Why would God give someone the burden of a disability before they were even born? Why him, why not someone else? Should I want him to be healed?

Gradually, as I thought a bit more and read some disabled theology, my views began to change. I realised it was unhelpful to me to think about spina bifida as some sort of negative burden, and tried to think about it as something really positive, something God had given to the baby and to us for reasons which might one day become clear. I decided, therefore, that healing was inconsistent with God's plan in which he had predestined that our baby should have this condition, and therefore I wouldn't want the baby to be healed.

Now Arthur is here, my views have changed again. Now, I think about him as Arthur (who, alongside various quirks and personality traits, has spina bifida), rather than 'a spina bifida baby'. Whereas before I happily embraced spina bifida as part of his intrinsic identity, I'm now less inclined to believe that disability in any way defines him. Having done catheters every 3 hours for the last 5 weeks, I'm pretty convinced that, were there any way I could take the annoyance of doing catheters away from him, I would.

Anyway, I've gone off on a tangent. At least this shows I've been thinking about disability enough for it to be a decent dissertation topic. Rather than focusing on issues of why people are disabled, or issues of healing, I'm thinking about human flourishing - what God wants for humanity - and how disability fits into this. I've been watching the Paralympics and reading Tanni Grey-Thompson's autobiography recently, and these have given much food for thought on what 'potential' and 'achievement' might mean when it comes to disability.

Back to Arthur. Our trip to Urology a couple of weeks ago revealed that he has been overeating which would be fine for a baby who can naturally expel unneeded nutrients, but not so good for a baby who retains. Therefore, he is on a strict feeding regime where he is only fed as much as he needs for his weight. This has meant quite a lot of griping on his part, but we've been a lot less stressed as we've finally been able to get into a rhythm. I think Paul and I are splitting the tasks very well, so I'm not too worried about how we'll cope when term starts.

Hmm. Start of term. Three weeks away now!

Thursday 16 August 2012

Baby Plumbing

Wow! What a couple of weeks it's been. No one ever tells you what hard work babies are! Well, they do. They tell you about sleep deprivation and never being able to finish a cup of tea or complete a task, but you don't actually BELIEVE them do you?

However, I'm not moaning. I've a sneaky feeling that Arthur is a particularly placid baby. Last night he slept from 10.30pm to 4.30am and again from 5.45am to 9.30am meaning that Paul and I got a really good night's sleep. Admittedly, he moaned for most of yesterday afternoon and evening but I can deal with that!

Our big worry is still Arthur's plumbing. Since being home we've slowly come to realise that he can't wee at all. It hit me quite hard first of all because I had really hoped he'd be the exception rather than the rule when it comes to spina bifida meaning incontinence (I expect all parents think this!) When we were sent home from hospital we were instructed to catheterise him every 6-hours, but this led to huge build-ups in his bladder. His bladder is only meant to hold 30 or 40ml, but it was often stretching as far as 150ml. Obviously, he wouldn't explode, the wee would force its way out eventually in a trickle, but would also go up into his kidneys which could be damaging.

So we're up to 3-hourly catheterising which has its problems, especially given how much he sleeps at night. If he sleeps for 6 hours, Paul and I really don't want to be waking ourselves (and, more importantly, him!) up after 3 hours to drain his bladder. Urology are sending us some indwelling catheters for overnight, so that should solve this problem. Going out and about is also a problem with 3-hourly cathing. A nappy change while out at the shops is one thing, but the cath takes considerably longer and generally involves a degree of screaming (not because it's painful, but because he hates lying on his back with his nappy off!) Still, it's something we'll have to work out. We're not the first parents to have to catheterise a newborn, and we won't be the last.

Anyway, the plan is that urology will work out why Arthur is producing and retaining so much wee, so it can be sorted out and the cathing can be done less regularly. To this end, Arthur and I have another overnight stay in hospital on Monday and Tuesday. Basically, they'll monitor what he's eating and what he's producing for a 24 hour period, as well as using the opportunity to scan him again and do some blood tests. I'm feeling quite chilled out about this stay in hospital. I feel I understand Arthur better now, and I know how the hospital works a bit better too, so I'll take all the home comforts we both need for a good stay.

Talking of the hospital, we had a appointment there today, this time with neurology. Some of Arthur's wound has healed very well, but the stitches at the top had come undone. The junior doctor told us he would need to restitch him under a general anaesthetic and keep him in overnight, but then a consultant turned up and said that, given that Arthur probably doesn't have a lot of sensation in his lower back anyway, he may as well stitch him up with no anaesthetic at all. Arthur screamed a bit (therefore, I conclude, he probably does have a bit of sensation in his back!) but the whole procedure only took about 5 minutes and I feel it was a better decision than subjecting the poor mite to yet another GA. While we were there he had his head measured, and I'm pleased to report it remains bang on the 50% quartile (exactly average) so there's no worry about hydrocephalus yet.

Oh - and we took Arthur to be registered today. That was great fun! It feels odd to be registering him in Oxford, given he's going to be a Westcountry boy really, but - as I always say - he'll be back in Oxford in 18 years anyway...! (Pushy? Moi?)

In other news... Well there isn't actually any other news. It's amazing how much a baby takes over your life. But it's not a bad thing, it's fab. I've been watching a lot of Olympics and I'm gutted its over but really looking forward to the Paralympics, especially because so many of them have spina bifida so I can show Arthur what he can achieve if he works hard.

We've had lots of lovely visitors over the last few days, and we've been down to Somerset too to see some family. The wonderful wonderful people of Cuddesdon are continuing to drop food at our door and I count my blessings every time they do. Life is good.

Sunday 5 August 2012

Arthur James Alderson

This is going to be a long post...!

This time last week, I was in labour! (The state of birthing a child, not the political party).

Since finding out I was pregnant, Paul and I had joked about me going into labour on 29th July, which was an amusing thought for two reasons -
1) It's my birthday.
2) To celebrate my birthday, we had tickets to the women's 3m springboard final.

Up until a couple of months ago, I had every intention of going to said springboard final. It was only when I became rather heavy and lumbering that I decided against it, due to all the crowds and queueing. I didn't seriously think I'd go into labour 9 days early, so I told Paul to go anyway. Mum kindly agreed to stay with me so we could play Scrabble, eat birthday cake and watch the Olympics on TV.

At 2pm we settled down to our game of Scrabble. I got three brilliant words (including getting all my letters out on a triple for 109). And suddenly I started feeling pains. Mum immediately suspected I was going into labour. I assured her I was not, it was just the effects of sitting on the sofa leaning forward to play Scrabble.

By 2.50pm there was no doubt. Paul, from his seat in the aqautics centre waiting for the diving to start at 3pm, phoned me to check I was watching it. I decided not to tell him, so as to let him watch the event without distraction! An hour later, I was getting regular painful contractions so I phoned him as he was leaving Olympic park. "You'll never guess what..."

While Paul rushed back across London, the contractions got worse and worse. Mum was super calm and helped me write down how often they occurred and for how long. I was hoping to hold out at home until Paul got back, but was amazed at how quickly the contractions got painful. At around 5.30pm (I think) Mum phoned for an ambulance.

I've never been in an ambulance before. The crew were great, and drove carefully to the hospital without the lights on. I was pleased for the gas and air, but upset when the paramedic commented that the labour seemed to be progressing very quickly. I was terrified Paul wouldn't be there for the birth.

Things got very painful from there, also quite blurry. I remember my waters breaking. I remember Paul arriving and Mum slipping away having been amazing. I remember lying on a beanbag and asking for an epidural. I also remember being told the anaesthetist would be half-an-hour and reacting in a slightly ungracious way. I remember having the epidural and being pain free and conversational. I remember Cheryl - the fantastic midwife - recommend that both Paul and I have a sleep before pushing. I remember, 5 minutes later, wanting to push and doing so painlessly for an hour, then painfully for another hour (they'd dropped the medication in the epidural to make me work, I reckon!) Eventually I was tired of pushing and had to have an episiotomy and forceps delivery. He was born at 3.10am, weighing 7 lbs 10 oz.

We always knew that the room would be pretty crowded when he was born. Indeed, there was the midwife and two doctors assisting with the birth, and a large team of paediatricians waiting in the corner with resuscitation equipment in case the Arnold Chairi malformation of his brain meant he couldn't breath. And then he was born and he screamed and they gave him to me, and we knew he was ok. I had him for a moment then they took him away and wrapped him in cling film to protect his spinal defect which, as predicted, was completely open. Then they wrapped him in blankets and brought him back to us.

We decided he would be Arthur James Alderson. It wasn't the name we had planned. He was pretty much definitely going to be James Arthur. Then we saw him, and he looked so much like an Arthur.

He went off to special care, I slept. Paul went home and slept. I woke up feeling faint and confused. Paul returned and we were visited by two neurosurgeons who told us that Arthur was doing well, but would need to be operated on immediately. He didn't need any operations on his brain, but the hole in his spine would need to be closed. They talked us through the risks and we signed a parental consent form, which was really odd given we had only met him once, for twenty minutes.

While he was operated on, I was taken up to the Silver Star Unit, where people whose pregnancies are high risk recover from labour. It's mostly for women who have some problems, but whose babies are healthy, and I could hear women with their babies in the adjoining rooms.

It was not until 3pm that I received a phone call from Robin's Ward, in the John Radcliffe Children's Hospital, to say that Arthur had been taken there. Not needing a ventilator or incubator, they had decided to place him by his condition, rather than his age, so he had gone to a paediatric neurology ward, rather than back to special care. We went to visit him, Paul pushing me in a wheelchair. He looked so small in a big cot. He was hooked up to all sorts of monitors, but it was wonderful to be able to hold him. I went back to sleep at the Silver Star unit feeling happy.

The next day I realised we had a problem. Arthur was in the Children's Hospital. I was in the Silver Star unit. The two are at opposite sides of the John Radcliffe hospital. Arthur could not move over to me (because he needed monitoring from neurology) and I could not move over to him (because I am not a child!) I told Silver Star that I did not need to be there any more, and wanted to be with Arthur, and they agreed to discharge me.

The next two days (Tuesday and Wednesday) Paul and I spent all day on Robin's Ward, going home in the evening. Together, we learnt to feed and change Arthur. Both days we missed the neurologists' rounds, but were told that they were very happy with the way Arthur's wound was healing. The nerve damage appeared to have caused some weakness in his ankles. One of his ankles is also slightly out of alignment (called talipes, or club foot, something which they hadn't spotted on the scans). But the long term prognosis was as we had thought - he will be able to walk but probably with ankle braces. As expected, he is unusual in a spina bifida child in that he does not have hydrocephalus (fluid on the brain) as yet, but they'll keep monitoring that.

Urology were very interested in Arthur. We were visited frequently by a urology nurse who told us that they weren't sure whether Arthur could be continent or not, and we won't know whether he has control over his bladder and bowels until he is of potty training age. Some spina bifida children are unable to fully drain their bladder, which damages their kidneys. Others can't control their bladder and wee all the time. We won't know which one Arthur is, if either, for a long time. Until then, we are having to catheterise him four times a day. The reason for this is mainly psychological - starting to catheterise a three-year-old is stressful for both parents and child so we are starting from birth. We will keep praying that Arthur will potty train fine, when the time comes, but we are aware that incontinence is a strong possibility.

Having to start to catheterise him so regularly meant that I was asked to stay overnight on Robin's ward. This was a tricky place to be while recovering from labour, as we were in a ward with mostly older children, with their parents sleeping on 'day beds' next to cots/beds. As I was not the patient, I wasn't provided with food or washing facilities. When Arthur cried in the night I felt really guilty that he was waking people up. I also felt quite self-conscious about how I was caring for him, there being so many people around all the time. With so much else on my mind, I fell into feeding him formula milk, something I am trying to get out of now he is home.

But the nurses were brilliant. They were so patient with showing Paul and I how to feed him, change him, how to dress his wound and catheterise him. Although the situation was hard for me, Arthur got amazing care and I am indebted to them. The other parents were also wonderful, and I felt inspired by how much they had to go through. There were many children much sicker than Arthur, and the parents slept with them on the hot, noisy, uncomfortable ward day after day for many weeks or months, without complaining.

On Friday we were visited by the Consultant Neurologist. He confirmed that Arthur's wound was healing incredibly quickly, and told us we could go home on Saturday. We will have to visit the hospital regularly for appointments with Neurology, Urology and Orthopaedics, but hopefully (as long as hydrocephalus doesn't develop) Arthur will avoid being an inpatient for some time yet.

We've now been home for a day-and-a-half and things are absolutely wonderful. As well as the normal newborn stuff like feeding, washing and nappy changes, Arthur has to be catheterised every six hours which is a difficult and fiddly procedure involving inserting a tube into his bladder and draining the fluid. This doesn't hurt him, but is much easier when he is asleep and therefore not kicking around! His dressing also has to be changed a couple of times a day, which is quite easy to do, but must be done very precisely. The wound is about 5cm long and just above his bottom, so the dressing gets dirty quickly and has to be changed to avoid infection. Arthur is also on three types of medication to help with the pain and aid healing, and these have to be administered into his mouth through syringes.

So... it's a lot to think about! But we are so lucky that Arthur is such a calm and happy baby (is it because of the drugs or is it his natural personality?) Like all newborns, he cries when he's hungry, he grouches when he's dirty, but most of the time he's sleeping or just looking around curiously. He's very easy to settle. We took him to Asda today, and he slept throughout and received lots of compliments from fellow shoppers. Did I mention he's ever so cute? We can't stop looking at him!

We're so thankful to everyone who has been supporting us and praying for us in what has been an often quite difficult pregnancy. Now Arthur is here, we're thinking very little about his condition. We're just enjoying him and the joy he is already bringing to our lives.

Thursday 26 July 2012

Impatience

The last few days have confirmed something I already knew about myself. I am rubbish at waiting for things. I am very, very impatient to meet Baby A sometime soon.

At this point, I can hear those of you who have been pregnant, and have gone overdue, take a sharp intake of breath because, of course you know, I'm nowhere near due date yet. 12 days to go in fact. But I've persuaded myself that, given that I myself was a few days early, and that I've been getting a few niggling stomach pains, and that Baby A is massive, he is imminent.

The statistics would not agree. I read the other day that only 25% of first time pregnancies are early, with 5% on due date and around 70% overdue. Of those who have had first babies in the time I have been at Cuddesdon, all have gone significantly overdue. In Oxford, they let pregnancies go two weeks overdue before they induce. 7th August, my due date, seems long enough away. I'd need a telescope to see 21st August.

However, a complicating factor with me is that I am not normal (see *high risk pregnancy!* sticker on notes.) The community midwife suggested that, the chances are, if I get to due date and Baby A is not playing ball, they might just induce then and there, because he's as big as he's going to be and an induction would mean a more planned birth. I quite like this idea, as I find the thought of spontaneously rocking up to the John Radcliffe a little disconcerting, given that they have to arrange for a Paediatric Neurosurgeon to be present at the birth, in case the ill-fated Baby A cannot breath. But I guess they're used to these things. There's babies born there every day who have more risks at birth than Baby A.

Anyway, we're seeing the Fetal Medicine Consultant for a final scan tomorrow, so I'm hoping he'll shed some light on what he envisages happening from now.

In the meantime, Mr A and I are here in the flat. Neither of us enjoy the heat, and I am especially adverse to it at this time, for I am the size of a small elephant. Also, we are well into the overdraft and given that venturing out of the village seems to inevitably involve spending money, we're trying to stay at base. I have The Sims, an Alan Partridge audio book and a stack of books donated by Auntie Josh to entertain me. Oh, and my essay.

We haven't been complete recluses. We went out for a curry with Kate and Lawrence on Wednesday night, and visited New Marston at the weekend, and saw Felix and Laura for Pictionary last week. I fully intend on going to morning prayer at the church when it starts off next week.

Mr A is going to the Olympics on Sunday. When we decided, last year, that he, I and my parents would celebrate my 26th birthday by attending an Olympic event, we did not envisage a clash with the arrival of an as-yet-unconceived sprogling. The women's 3m syncronised diving final was selected, as we felt it was obscure enough that we would probably get tickets, and, lo, we did. At first, I was confident I would still be able to go, but as I got more lumbering, and with Baby A's complications meaning I need to stay close to the JR, I resigned myself to the fact I would not directly witness London 2012. I'm keen that Paul goes though. He is going with my Dad, my brother, and my brother's girlfriend. Mum is staying here and we're celebrating my birthday by cooking a roast, playing Scrabble and watching 3m diving on the TV.

I sort of thought the last few days and weeks prior to Baby A would be a mad rush buying last minute things, but to my amazement we're actually there. Our last purchase was £300 on a set of reuseable nappies, which has been the major contributor to the overdraft's sorry state, but given the price of disposables I think they'll pay for themselves.

We're prepared in other ways too, in that we actually have a name! Yes, a name! A name which, when I write it down, looks like a proper name which might belong to an actual person. 12 days to go, perhaps this is THE name? We're getting short of time if we're going to change our minds! We shall see....!

Wednesday 11 July 2012

Going West

I think I may have found a Curacy.

I say 'think' but it seems so entirely appropriate that I'd be very surprised if this wasn't the one. It's the second one we've looked at. We were contacted by the Diocese a few weeks ago with the Parish Profile of one particular place. It looked ok - more Anglo-Catholic than I was expecting, and in a slightly remote geographical area - but good enough to take a look. We went down to visit over the Jubilee weekend, but it just felt wrong.

Sure, the Vicar was lovely. And the house looked incredible (the sort of place a rich Uncle might live, not humble old me, Mr and Baby A). But somehow I felt uneasy. I kept wanting to see something absolutely awful, an easy excuse to rule it out, but everything was just fine. It's just that we couldn't see ourselves living there, and I couldn't imagine ministering in those churches. We prayed, we reflected, we said no.

The second place was completely different. From reading the Parish Profile and all the way through our visit we both felt somehow excited. I can't quite pinpoint why. Just gut instinct. Maybe that's the way God calls. When we got home, I emailed the Diocese to say that I felt positive about this one. This morning, we went to see the DDO who confirmed that the Vicar who would be my training incumbent has said the same thing.

I wish I could tell you where it was. Unfortunately, at least another visit is needed to firm things up. We'll have to meet the rest of the Team and Churchwardens, have my appointment discussed by the PCC and get stuff signed before I can tell you. Suffice to say it's a small town. The distance to our families in Taunton isn't too much further than when we were in Exeter, and our friends in Exeter will be very near indeed. The churches are a super mix - from Anglo-Catholic to Open Evangelical - and breadth, as you know, is right up my street. They seem excited about mission and ecumenical work. We've only seen the outside of the house, in a highly-populated residential area in the town, with lots close by.

We could bring up Baby A here. We really could. Talking of which it's less than 4 weeks to go. But more on Baby A next time...

Saturday 30 June 2012

The Valley of the Shadow of Death

As many of you know, we've had a tricky couple of weeks. Actually, tricky's probably putting it a bit lightly...

It all started on Friday 15th. Having been mercifully spared appointments at the hospital for 7 weeks, we were booked in for an ultrasound to check everything was going ok. It had all been so positive last time we had no reason to believe anything would be any different. Our appointment was at 10am. The Fetal Medicine Unit like to faff around weighing me and doing my blood pressure for a bit beforehand, so we were expecting to be waiting for a bit.

Not 4 hours though.

Finally, at 2pm, with me almost bored to tears and Paul complaining that he may well be dying of starvation, we were called in for the scan. Now, I think we'd probably caught our dear Consultant on a bad day (he'd just spent a very long time with a couple who had a film crew...) First of all, his research assistant tried to scan me, but gave up after complaining that the scanner was no good and the baby was the wrong way up. Then the Consultant took over.

"I can't see the cerebellum" said he, and explained this could mean that Baby A has Arnold-Chiari type 3 malformation (we already knew he had Arnold-Chiari type 2, normal for spina bifida). He also said that the head was extremely small and might be termed clinical Microcephaly. I would need an MRI scan. And having the MRI and getting results would take 2 weeks.

So off we were despatched, having been in the waiting room for 4 hours and the scanning room for barely 15 minutes, armed with some medical terms which "would affect the prognosis and resuscitation upon birth" but we weren't sure how.

Now, Google is a wonderful tool if you want to, say, find a restaurant or look up train times. However, Googling either Arnold-Chiari type 3 or clinical Microcephaly does not provide happy reading. 14 weeks ago, when we found out Baby A had spina bifida mylomeningocele, we Googled to find many, many people with the condition living very fulfilled lives; wheelchairs, leg braces and catheters not affecting their ability to work, study, enjoy hobbies, form friendships, live independently, marry, have children etc. etc. These conditions seemed much more grave, AC type 3 in particular, where the bottom of the brain severely herniates, often out of the back of the head or neck. Wikipedia proclaimed that children with AC type 3 do not normally live past the age of 2 or 3 years old.

Ah. Right then.

2 weeks of worry started there, not helped by a cold, restless leg syndrome and another kidney infection. Sleeping was impossible. The MRI came and went and it felt good to have got one more step along the way to finding out what was happening. Being surrounded by baby stuff was not easy, nor were the well-intentioned strangers in shops asking "when's it due?", nor really was Baby A's kicking, because I had no idea whether he had the capacity to kick (or breath, even) outside the womb.

I think you go through phases. At the start, I was very upset, and Paul was angry (though he couldn't work out who he was angry with, given it wasn't anyone's fault...) Then we went into practical mode, even thinking - "well, if we were to lose him, what would we need to do?" Then we'd go optimistic for a bit - "it's all a mistake, they simply couldn't see the brain properly on the scanner." Then realistic - "why would he even say it if it wasn't a possibility?" Then philosophical - "maybe it's just not meant to be..." The theological questions which I'd written about 'academically' became a stark reality - Why would God cause something like this? What are the ethics around keeping a child alive, but in pain, for just a couple of years?

Finally, we were back at the hospital yesterday. We were only waiting 30 minutes this time, thank goodness. A Doctor did the scanning, under the watchful eye of our Consultant. Baby A had the decency to be head-down this time, so they could see the brain easily. "Aha," said the Consultant, after a short while, "I couldn't see the cerebellum last time, but there it is!" - Relief!

The outcome is, well, we're sort of back to the same prognosis we were working on before. The Arnold-Chiari type 2 (where some of the cerebellum herniates into the neck) is a little more severe than they'd like, but not severe enough that he wouldn't be able to breath on birth. They'll have a team on standby just in case, but it's very unlikely it will cause a problem. His head is a little smaller than usual, but not small enough to be termed Microcephaly or to cause any problems, and it now appears to be catching up with his body. Unusually, he does not yet have hydrocephalus (fluid on the brain, very common in spina bifida) and his spinal defect has been confirmed as 'sacral only' (right at the bottom of the spine, meaning he has a good chance of one day being able to walk).

I've just realised this post is rather medical! Sorry about that. But now we've had some better news it feels good to explain everything. I think it's been an important experience for us. For a start, it's made us realise how lucky we are to have this baby. I'm well aware that there are very many people who are not so lucky. I've also realised how lucky we are to have the support network we do. Our families are always supremely supportive. Then there's college; it's only now that I realise how many kind people have just popped round to check we're ok, staff and students. And friends from home of course, who have rung and texted and emailed. And all those little Facebook messages too.

With 5-and-a-half weeks to go til the grand arrival of Baby A, we're back in the Westcountry, seeing friends and family and looking at another Curacy. Life is on the move again...!

Friday 8 June 2012

This Time Next Year...

Sorry to keep you. I've had a nice few weeks. Outstanding memories include:
- The Jubilee, which I mostly watched on TV while sprawled on my parents' sofa with Lilibet the cat.
- A lovely afternoon at Killerton House with Emily, Tabitha, Emma and Chris. I ate a lot of scones and encountered a bear.
- A nice evening with friends earlier in the week, marred only by the great Trivial Pursuit catastrophe in which the boys came back from 5-0 pieces of pie to win.
- Bright Hour last night, after which my ribs ache. Kate and I did a sketch about pregnancy which seemed to go down well. Other highlights included a spectacular rendition of 'Bless me Jesus one more time' by a very talented ordinand, and the Principal interviewing himself.

T'was the Leavers service this morning. In a crowded church we wished them well as they trotted off in cassocks and armed with their stoles (scarfy things vicars wear round their necks, not to be confused with stools which are something quite different). Most of them will be ordained Deacons on 30th June or 1st July. A few (like the Exeter ones) will have to wait until 16th September. Many of them are on the road already this afternoon, having emptied their college homes of possessions. Some are around for a few days to get those final boxes packed.

It's going to be really odd not seeing those familiar faces around any more. It's amazing how much you take for granted, even those little cheery conversations with the fellow students that you don't know so well. We've only a week to go until the end of term, but I think the college is going to feel like quite an empty place.

So, this time next year, that will be me. This time last year I was looking forward to starting college while stressing about a house sale, buying my first cassock and knocking a wing mirror off a hire van during an ill-fated trip to the dump while de-clogging Alderson Manors. At that time, coming out of the other end of college felt like a world away. But here I am at the half-way point, and suddenly the end is in sight - albeit a sort of blurry and vague end, with a lot of exciting stuff between me and it.

Talks with the Diocese about just where I'm going to go have kicked off, which is great. Unfortunately, the Curacy-finding stage is not particularly Bloggable, and I'm probably going to have to keep radio silence until I've found somewhere and all the paperwork has been signed off. Needless to say, while it feels like things are happening, I'm nowhere near finding somewhere as yet. I'm feeling pretty chilled out though - I'm extremely fortunate in that Exeter is a big Diocese with lots of Curacies, so it's unlikely I'll end up with nowhere to go.

Of course, the less blurry and vague deadline is Baby A. We now have precisely 2 months to go until 'A Day' which currently sits at 8th August. I'm amazed at how strong the kicking is getting. I never really thought that I'd sit in church watching my stomach moving independently. Very strange, but somehow cool also.

So, the long Summer stands ahead of us with a couple of essays to do, a couple of weeks in Somerset to look forward to, oh and a small child to look forward to also. I'm determined not to wish time away but to enjoy each day. Cliched, but good advice always, I think.

Sunday 13 May 2012

A Heavy Week

I've just come to the end of another TSW (what do you mean you don't know what that stands for? Were you not concentrating when I described the last one back in January? It's Themed Study Week, and this is the last time I'm telling you!) On TSWs, the college splits into lots of different groups to learn about different things in an intensive way for a week. There was one on art, one on children and young people, one on rural ministry... I, however, did one on DEATH!!!

Fret ye not, I have not become worryingly morbid, choosing a week of intensive death over a week of looking at art. Everyone has to do the death, dying and bereavement course at some point during their time in training, and I thought I'd get death over with in my first year.

On Monday and Tuesday we had one of the Chaplains from the John Radcliffe hospital who talked to us about the process of grief, particularly around sudden deaths and neonatal deaths (amazingly I survived the stillbirth and miscarriage morning emotionally intact!) On Tuesday afternoon we worked with a psychotherapist to explore grief through psycho-drama. On Wednesday we talked about the theology of death and resurrection, on Thursday about bereavement visiting and funeral liturgy, and on Friday we essentially mopped up (our questions, not our tears!)

It's a week that has given me a lot to think about, probably more so than any single course I've done at Cuddesdon so far. I covered quite a lot of the theology of the resurrection stuff during my last essay, and that's something I continue to grapple with. If a grieving person asks me "where is my wife now?" I want to be able to answer them with integrity and not just 'fob them off', but if scripture and tradition teach us anything it's that we know very little. I can't say where heaven is, whether we go to it immediately or what sort of things we will do when we get there. All I can say is that we have hope in an all-loving God. It's all we have and all we really need.

And then, of course, there's the practical stuff. It strikes me that if there's one thing you really, really don't want to muck up as a priest, it's a funeral. It's not uncommon for a vicar to be doing lots of funerals a week. I can imagine a scenario where my diary is packed with stuff, rushing from one thing to another - PCC, toddler group, confirmation classes, writing sermons, meetings about meetings... And then off I rush to do Old Ethel's funeral. And even if I'm tired and worrying about the next thing in my diary, Old Ethel's funeral will only happen once. This is the memory that Ethel's husband of 60 years and her kids and grandkids will be left with. Being tired is not an excuse for hitting the crematorium button at the wrong time or accidentally calling her Edith.

Phew... who'd be a Vicar? I refer back to my previous post about not being ready for ordination yet. The thing is though, while it's daunting, it's also a huge privilege. Who else gets to be with people at these most intimate and monumental times in their lives? - Birth, marriage, death and everything in between, proclaiming hope where there is sadness, resurrection where there is death.

Aren't all the important things in life just a little bit scary?

Thursday 3 May 2012

Up, Up and Away


I begin this post by offering you a pair of small images of the uncooperative Baby A. Uncooperative because he refused to look at the scanner. But seeing as I've posted all his previous snaps on this Blog, I may as well stick with tradition. I had another ultrasound last week; the hospital seem to have largely forgotten about doing an MRI and I'm not going to remind them. In brief, they've identified that the spinal defect is no higher than the 'lumber 5' position but mostly in the sacral region, and that the hydrocephalus has actually reduced by 1mm. This is all very good news.

Added to his apparent stubborn nature, I am under the impression that Baby A is going to be a lively so-and-so. This is because he does not stop kicking, particularly when I am in church. I can only imagine that he either really, really enjoys my singing or he really, really doesn't and is staging a protest at having to listen to it twice a day. Last night, Paul decided to do an inexplicable rendition of 'Oh When the Red Red Robin Goes Bob Bob Bobbin' Along' and got booted in the ear. Admittedly, it is quite fun that he now seems to be reacting to things.

I have now handed in two essays totalling 7,000 words each which... *grabs calculator*... is precisely 29.16% of the total words needed to complete my MTh. Although I'm not delighted with the quality of my essays, it feels good that they are in.

Today, I'm submitting titles for my next two 7,000 word essays. They are -
How has the concept of ‘ancestor’ found in African traditional religion influenced African Christology?
and
How can self-identification as a Christian be reconciled with rejection of the existence of God?

They're due at the end of September so I'm feeling reasonably deadline-free for the moment. Having done the summer placement already, I'm starting to wonder precisely what I'm going to do all summer? I mean, yes, I'll write these essays, but two essays aren't going to require every waking minute of the 14-week holiday are they? And, yes, hopefully Baby A will make an appearance at around week 7 or 8 of the 14, but that still leaves quite a lot of time on my hands. And Paul will have finished his course completely by then. Hmm...

The last week or so I've been reflecting on, really, how little time is left at college. I've just received a round of emails from my fellow occupants of the Runcie Building letting everyone know when removal lorries will be turning up. The earliest mover is going at the end of this month. That's going to be me next year. Me, Paul and the infant Baby A, moving into a Curate's House in a yet-unknown part of Devon.

I'm definitely not ready for ordination yet. I'm hoping I will be ready this time next year. That's if anyone is really ever ready for ordination and, to be honest, I doubt it. We offer ourselves in all our unpreparedness and rely on God to do the rest. That's all we can do, and all we will ever be able to do.

Tuesday 24 April 2012

There's something about Mary

The last term of my first year has begun! Morning Prayer, Evening Prayer, meals. A suspicious lack of lectures though - just my 11.00 MTh on a Friday. Well, I could do with a quieter term. My aim is to fill the silence with some reading about spirituality and Priesthood which isn't related to any essay I'm doing, so as to start getting into the mindset of starting a curacy next year.

Morning Prayer yesterday was a little bit tough. Having felt really quite well over the holidays, I came over all dizzy again in the hot chapel and spent most of the service sitting down. The GP thinks I might be a bit anaemic, which sounds likely. This morning I decided to sit up in the balcony where it's less like a tin of sardines, and take a glass of water with me, and while I still felt like I could keel over at any minute, it made the experience more bearable.

I mention this because this morning's gospel reading was Luke's Annunciation. I've checked my lectionary and can see no reason as to why we get this one today, but there you go... Anyway, holding my head, sipping my water and listening to this reading, a funny thought bestruck me; I wonder if Mary experienced these sort of symptoms? Not just anaemia, but all the other things that go with pregnancy; sickness, heartburn, tiredness, and all the less bloggable stuff.

Given that God chose to become incarnate through an ordinary (albeit highly-favoured) woman, and given that the biology of pregnancy hasn't changed a lot, I would have thought it's likely this was her experience. But, unlike me, she probably didn't have a lot of medical support avaliable. And she probably didn't find herself in receipt of a lot of sympathy. I've heard it said that Mary would have been around 13-years-old, about the normal age of betrothal in that time. Women probably spent most of their pregnancy indoors, and with criticism for being unmarried, I can't imagine Mary saw a lot of other people for those 9 months, and those whom she saw may not have felt moved to cheer her up by, say, buying her a nice set of sleepsuits from Mothercare to furnish her baby wardrobe. So while pregnancy hasn't changed, she surely wouldn't have had as much support as I do.

Baby A's various quirks make living in the 21st century a particular blessing. Even in the middle of the last century babies with spina bifida weren't expected to live into adulthood, and parents wouldn't have known about the condition until the baby was born. I, on the other hand, am getting brilliant support (yesterday my GP, who I met for the first time, said "oh I suppose 99% people in your situation would terminate," which made me rather cross, but she's been the exception). On Friday I'm going for my MRI scan, MRIs in complicated pregnancies being yet another recent development.

Aside from reflecting on Mary and Baby A I've been mainly working on essays. Essay-writing is getting me very much frustrated, it doesn't seem to hold the joy it once did! Luckily, I genuinely don't care about getting brilliant marks in my MTh. The 'Potential Theological Educator' suggestion has been well and truly laid aside. Give me the work of a Parish Priest any day!

Talking of, I found out this morning where my 2nd year church placement will be. I haven't contacted them yet so I can't say where, but it's liturgical, inclusive and rural, which is what I wanted. Should soon be finding out curacy. Now that will be very exciting!

By the way, for those of your interested in Holy Hogwarts, Radio 4's Sunday Worship is being broadcast from here on Sunday at 8.10am. Just a little plug there!


Sunday 8 April 2012

He is Risen

WHAT a day!

Well, what I actually mean is what a MORNING. My alarm went off at 3.45am. We both managed to get up and ready in a zombie-ish fashion. The cats seemed very confused to be eating their breakfast at that hour of the morning "what's this - Whiskers? Well we won't say no but it's 4 in the morning don't you know?" (Is what I'd imagine they'd be saying in a very English accent).

Rick rang on our door at 5am and we piled off to St Michael's. Oddly, not a lot of traffic on the road at 5am. Paul's big job of the day was 'liturgical fire starter,' building the bonfire with which to light the paschal candle, which is why we had to be there so early. Given that it was raining, it was rather an impressive furnace. Liturgical bonfires - yet another string in my husband's bow.

The dawn service started at 5.45am. The candles (yep, two Pascal candles, don't ask) were lit from the bonfire and there was a procession into the church with Elaine singing the Exultet. Therein followed five readings from the Old Testament, the Epistle, Gospel, the Proclamation of EASTER (inc bells and party poppers), a sermon (by me), reaffirmation of Baptismal vows and a Eucharist. This took just over 3 hours, but oddly it didn't feel very long.

After having breakfast at church, we set up for the 10am which had an altogether different feel. Lots of families, some of whom (I imagine) aren't regular attendees which is great. Rick and I did the all-age talk, which was chaotic in a good way! Reaffirmed Baptismal vows again. Another Eucharist.

Easter = done.

Having slept for 3 hours this afternoon, I've spent some time looking over my Blog which is now a year old. A huge amount has happened in the last year: BAP, finishing sensible grown-up job, selling sensible grown-up house, moving to Oxford, starting Theological college, and general reassessment of life in light of both impending ordination and impending tiny child.

I've realised today how incredibly important this placement has been for me (ok, technically I have another week to go, but given it's the week after Easter I'm not doing a lot, other than preparing a sermon for Sunday). St Michael's has helped me to reconnect with all that I love about church. It's reaffirmed that liturgy is important for me, and that I am essentially theologically orthodox but socially liberal. But, more importantly, it has submerged me in a deeply-caring church community made up of people of all ages and from all parts of the social spectrum. It's a small community, but people feel a real responsibility for making their church tick. Added to that, a very supportive placement supervisor has made this placement really work. I absolutely love being here, and we've decided to continue to attend St Michael's until my next placement starts in October.

This morning, I preached on Mark's resurrection account and the "terror and amazement" that seized the women fleeing from the tomb. This little scene portrays the awesomeness of the fact of the empty tomb. It establishes this event as the axis of history, an event to which his followers didn't simply say "jolly good, he's alive again" but were stunned into silence. I reflected on how this moment in time colours everything we do as Christians. For me, the reality of the resurrection is an absolute. Without it, Jesus is nothing more than a good bloke who was put to death. The resurrection sits at the centre of Christianity - without it, nothing makes sense.

Alleluia. He is Risen.

Friday 30 March 2012

Dinosaurs and Fire Engines

Hello hello dear friends. Well, we are back from another tootle to the JR and everything seems surprisingly positive. I wondered whether to give you another exciting blow-by-blow account of our trip to the hospital, or to provide a shorter, blander medical summary. In the end I have opted for neither and hearby present the most recent adventures of Baby A in the form of a humorous song to the tune of the hymn 'He Who Would Valiant Be / To Be a Pilgrim.'

Baby A would valiant be, 'gainst all disaster
Kicking me is something he has duly mastered
There's no discouragement, for his spinal indent
Is quite a low segment, which is a good thing

Baby A, he will not hear more dismal stories
Still some fluid in his head; not enough to worry
Feet and kidneys look alright, Walking will be a fight
With braces he just might, which is a good thing

Oh dear I have to go, for an MRI scan
Lots of time in a small space; this much I can't stand
Still boldly I will obey! If it will help Baby A
He is a boy by the way, which is a good thing

I think that sums up our experience in the hospital. Essentially, everything looks good, surprisingly good - if the spinal defect really is that low (very low lumbar-sacral or sacral-only region) which the MRI should be able to tell, there's a chance he might be able to learn to walk unassisted. Very exciting!

The boy thing is great news as it has meant I am able to buy romper suits featuring dinosaurs and fire engines, which I reeeeeally love but would not be appropriate for a female Baby A.

Anyway, what's going on in the non-Baby A part of my life? Well I am on placement which is turning out to be really good fun. I am at St Michael and All Angels, New Marston. The placement has variously involved - praying (lots), drinking coffee (lots), talking to loads of lovely people, going to school assemblies and helping a group of children rehearse Shakespeare's Macbeth (in which I read the lines of Malcolm and ended up being hailed King of Scotland, to my surprise.) I think I could get used to this vicaring thing.

Well, it's 12.40 already and I'm going to Phillipa's for 1.30 and I need to eat my lunch first, so I will leave it at that for today. Next time, perhaps some more theological reflections on Holy Week. Or perhaps some more humorous hymns. Or perhaps a textual party for my Blog's first birthday. We shall see.

Monday 19 March 2012

A New Challenge

If you've come here from my Facebook page you'll know that Mr A and myself have been recently rather flipped upside down by the news that Baby A (being quite literally 1 in 1,000) has developed some rather tricky disabilities while he's been cooking away in there.

Sitting outside the John Radcliffe in the sun prior to our 20-week scan on Thursday we were anticipating that the hardest bit of the appointment would be saying "we don't want to know the gender." Fortunately, we managed to achieve that little sentence just fine and the scan proceeded just as expected. Nice little outline of Baby A to which we went "aww..." Some considerable time examining each physical feature (this didn't worry us, we'd been led to expect it would take a while.)

And then the moment when our 'perfect' sick-free pregnancy veered off one way, and reality the next, with the words; "there's something I'm meant to measure, but I can't see it."

Hmm... Anyway, the sonographer said that the failure to see whatever it is was associated with spina bifida, then rushed off to see if a consultant was available to give a second opinion, leaving Mr A and myself looking at each other saying "well, we've heard of spina bifida, but what is it?"

Anyway, after about 10 minutes the sonographer returned and took us up to floor 6 of the JR and sat us in what might be rightly termed a 'bad news room' because it was small with sofas and nice pictures on the wall. Presently we were whisked to another scan room where a very pleasant consultant gave Baby A another once-over and agreed with the sonographer's opinion. She took some pics and showed them to another consultant, who concurred.

So they'd observed a lemon-shaped head, banana-shaped cerebellum and a gap at the bottom of the spine which may or may not be covered with a membrane. These things point to spina bifida. Also a little fluid on the brain which is borderline but may mean hydrocephalus which is commonly associated with SB. For now, they just wanted us to confirm that we'd understood the headlines - severe physical disabilities, probable incontinence, probable learning difficulties of an unquantifiable severity, the option of continuation or termination. Not quite what we had been expecting a couple of hours before.

Well we were obviously shaken. But it was amazing how little time it took us to cheer up. I'm sure most couples have had that chat about 'in what circumstance would we choose to abort?' and we'd always agreed that any chance of the baby living a reasonably happy life is worth a shot. So our only option is to continue with the pregnancy and just pray for the best. We've done a heck of a lot of research in the last few days and have found that outcomes for people with these disabilities vary greatly - there certainly seem to be a lot who manage to live a very fulfilled life. Dame Tannie Grey-Thompson and many other elite paralympic athletes have these conditions.

Our whole outlook on pregnancy has changed in the last few days. Whereas before we were keen not to know the gender, we now hope to find out at the next scan, if only to be able to refer to Baby A as a 'little boy' or a 'little girl' and not 'a poor sick child.' Although we're yet to talk to the hospital about practicalities, a planned cesarean-section before the due date seems pretty likely. Certainly there will need to be a lot of forward-planning as Baby A will need surgery on his/her spinal cord soon after the birth as well as, most probably, a shunt fitted in his/her head to drain the fluid.

You'd have thought we'd be wallowing in sadness, but strangely we're not. The kind words of others have helped cheer us up no end, and now we're ready to look to a future which is just as exciting as before.