Wednesday, 25 December 2013

This Year, I DO Approve of Christmas!

This morning, I decided to be very kind to Mummy and Daddy and I let them have a nice lie-in - I even patiently waited until 5:30am before I woke them up!  I know, I know, try not to be too overwhelmed by my generosity.  It's not every baby who's as kind and considerate as I am, but just occasionally, I do like to be nice to The Staff to keep them sweet.  Besides, the longer I stayed in bed, the longer it would be before I had to face the single, worst day of the year - Christmas.  I couldn't help remembering last Christmas and how awful it was, so I can't say I had very high hopes for this one.  

Having brightly wrapped parcels shoved in my face and being told to rip paper even though I'm not allowed to rip paper at any other time of the year.  Strange people filling my house and refusing to leave no matter how much I shout at them.  The Staff insisting on playing jolly, jingly music all day and refusing my politely phrased requests to watch the single best television production of all time (I mean seriously, a day without Timmy Time is just not worth even beginning - don't they get this?).  So as I sat there playing with toys in my bed, I decided to put things off for as long as I possibly could and I watched the minutes tick by.

But eventually, Christmas must come to all of us, so I faced up to it bravely, and decided to confront the day head-on.  I SHOUTED for The Staff and notified them that I WAS AWAKE.  Sadly, they got to me far sooner today than they normally did - they weren't actually looking forward to Christmas were they?  I shook my head in despair and began to marshall the troops.  After a suitable period of giving directions, I had managed to get everyone up and dressed...and then I had to get re-dressed as Mummy did NOT approve of the Christmas outfit Daddy had chosen for me, apparently black trousers and a grey sweatshirt were not festive enough, even if they did match my mood....SIGH.  So we waited some more while Mummy ironed my soft tartan shirt and announced that this was acceptable for Christmas.  Alright already, can we get on with it yet??  What does a baby have to do to get things moving around here?  So, we went downstairs and faced....

The Christmas Tree.

I know, I know, it's a pretty thing, all sparkly and glittery - particularly when viewed during the hours of darkness, which is mostly the hours during which I am awake, but that's just not the point.  To me, it's a symbol of presents.  And I *hate* presents.  But alas, there was no escape...

Mummy pulled a brightly wrapped parcel out from under the tree and Daddy sat down beside me with it.  I took a deep breath and decided to get it over with...if I must...I must.  But then, something amazing happened.  

Daddy pulled off a corner of paper, just enough so I could see that there was something absolutely fascinating inside.  I wasn't quite sure what it was, but I knew I wanted to figure it out.  Hmmm....this might just be worth exploring further....So I ripped and I pulled until I found one of the very best things in the whole wide world!  You see, every time we've been in Asda over the last month, I've spied this toy and tried to pull it off the shelf for a little play. Just once, Mummy made the mistake of letting me have a play to keep me quiet while she did her shopping - this was a very good idea....but it was a much, much worse idea when she decided to take it away from me and put it back onto the shelf.  I had made my ideas about THAT particular idea VERY well known.  But today, as I discovered, Mummy had been very, very cheeky indeed because she must have gone back to the shop on a day when I wasn't with her and bought my favourite toy after all!  And look, here it was all wrapped up in paper for me to open today!  Wow!  

I did get a bit frustrated when I couldn't get it out of the box.  Who on earth wraps toys these days?  I've never seen so many tie-tags, plastic screws, so much tape and wrapping...anyone would think the people who made toys didn't actually want them to be played with!  But finally, MummyDaddy helped me and I was able to play with my new JBC alphabet toy and I surprised myself by realising that I was *actually* happy - even though it was Christmas!  I know, try to contain your shock, it really is extraordinary, but there it was.

However, right there and then, I conceded that one present wasn't *too* bad - but I'm not opening anymore.  I'm putting my foot down MummyDaddy, one did indeed surpass expectations but I shall not be opening any more presents today, and that is final!  

But suddenly, attention was diverted from me because at this point, Daddy lifted his head and sniffed the air, "What's burning?" He asked.  

Both MummyDaddy rushed out into the kitchen where Mummy had been cooking some eggs for her breakfast.  At first they thought it was the eggs burning....but no, it didn't appear to be those...they investigated further...

....and that was when the Very Loud Words I Am Not Supposed To Know started.  In fact, they started *quite* loudly so it was rather hard to miss them if you were, well, anywhere within a mile or so...  Indeed, there was rather a lot of rushing about in between The Words as MummyDaddy tried to sort out the burning, and that's when I discovered what had happened.

Mummy had done something stupid.

Really, really stupid.

So stupid, that it nearly destroyed Christmas (well far-be-it for me to suggest how possible this might have been...)

But thankfully, Daddy helped with the stupid part, or at least the not communicating part...

This is what happened you see:  Last night, Daddy put the turkey, wrapped in it's plastic wrapper into the cold oven to keep defrosting overnight and to keep dogs and cats away from the meat.  This seems reasonably sensible, but the problem was, that he didn't actually *tell* Mummy he had done this - she thought the turkey was in the fridge.  

So when Mummy decided to turn on the grill to preheat for toast to go with her Christmas breakfast eggs........

Well, you get the picture.  

200 degrees worth of picture.

Hence The Very Loud Words I Am Not Supposed To Know.

Daddy even had a tantrum.  That was very funny actually.  Usually it is me shouting and stamping my feet when I'm grumpy, but this time it was Daddy.  I was amazed to discover that Daddy does shouting and stamping *nearly* as well as me!  Then Mummy was shouting at him for having a tantrum and telling him it wasn't as bad as all that, the turkey was only a *little* bit blistered, the plastic came right off and she was *quite* sure there was none melted onto the meat, and no, Christmas wasn't ruined...well, it was really quite funny.  I just sat and watched them and smirked.  I mean seriously, grownups are just sooooo immature sometimes.  

After all, what's wrong with grilled turkey?  Even if it is still wrapped in plastic?  I mean, you're gonna cook the thing anyway!  So it was just a bit ahead of schedule.  No big deal...if all else fails, we can have chicken nuggets for Christmas lunch.  Trust me, no one will ever know the difference.

Eventually, The Staff chilled out a bit and decided the best remedy was another present for me.  Well, I guess I can't fault their basic logic as I should always be the centre of attention, but I wasn't sure about this idea of opening another present.  Still, Daddy sat down on the floor with me, while Mummy kept staring at her screen, and once again, he helped me to see what was inside. 

It was a set of three parcels from Mrs GodMummy, all brightly wrapped with glittery red ribbon.  Once I got going and could see inside, I realised that there might just be more than one nice thing in a present.  MummyDaddy, is it Scoop, Muck and Rolly?   Oooooo!!!!!  They have wheels!  I can roll them about on the floor!  MummyDaddy, this is the best present in the world ever (since the last one of course).  In fact, they were such good presents that they kept me busy for well over an hour.  I rolled them and rolled them and rolled them.


But eventually, MummyDaddy had gotten bored of watching me roll my toys about.  I think they might have opened a few presents themselves in the meantime, but as I'm sure you can appreciate, I wasn't watching *them*.  I was busy.  But then, it happened.  Mummy got one of those big smiles on her face and Daddy pulled out the biggest, huuuuugest, most ginormous present ever in the whole world ever!  This was the one I had been meaningfully thumping for the last few days, but they kept being mean and telling me to leave it alone.  But finally, it seemed that it was time to open it!  Just when I thought I had already opened all of the very best Christmas presents, it was time for this one!  I got so excited, that I just had to dance around and jump and sing.  I was so excited by this point that I wasn't listening when Daddy said this one was from most of my Aunties and Uncles, I didn't really care who it was from, the important thing was that it was here now.  

It took me a few minutes to really notice what Daddy was doing because of my dancing, but I helped him do some ripping and then, I. Saw. It.  Daddy had ripped just enough that I could see the picture on the front of the ginormous box and I froze.  I crouched down and I stared fixedly at that picture.  MummyDaddy, I know this toy, I have this toy at nursery and I love, love, LOVE this toy!  MummyDaddy, this toy keeps me busy for hours at a time when I play with it at nursery!  Is it really the same one?  Has it come here to our house?  Is it a Tower Slope and is it ALL for me???????  MummyDaddy, it's the best present in the world absolutely forever!!!

It took us a few minutes to get it out of the box, but I helped Daddy to tug on it and at first it was quite unstable and kept nearly toppling over on me, but that was because Daddy had to go out to His Shed (the place where magical Daddy tools are stored) to get a screwdriver.  Once he had put the little blue feet onto the bottom of my toy, it got much steadier and I played and played and played.  In fact, I played for so long that Daddy managed to get the turkey lunch ready while Mummy watched me and I was still playing.

At this point, they decided I was having so much fun that it would be good to leave presents at that.  There were loads more under the Christmas tree but that was ok, I didn't mind waiting because I already had the best presents in the world.  Besides, they told me that we're having Second Christmas in a few days when my big brother gets home from wherever else he goes, and so maybe we'll open the rest then.

There were of course other things that happened that day, like Nanny and Grandad coming round but I basically ignored them, then of course there was Christmas lunch which once again, was a definite high point of the day (mmmmm sprouts!), and finally there was nap time which I resisted quite strenuously on the grounds that it was taking me away from my new Tower Slope.  We watched some TV, ate some more, played some more and well, basically, that was Christmas.

But in the end, despite my misgivings, maybe TodayChristmas isn't *quite* as bad as LastChristmas.  I might just give it a go again next year...so long as MummyDaddy come up with more good presents that is...

Happy Christmas everyone!  (And thank you everyone for my presents)

Friday, 20 December 2013

Christmas Miracles....In Unexpected Packages

'Tis the season for miracles, and in our house they seem to have come in rather unexpected packages.

Anyone who reads this blog regularly will know that Adam does not sleep.  In fact Adam does not sleep with such great success that nobody else in our house sleeps either - nor does anyone in our vicinity on the residential college corridor where Adam and I spend half of every week.  It is an exceptionally good night if Adam is *only* up twice.  It's far more normal for him to be up anywhere from four to nine times and, sometimes, to be up for the whole night.  

He is two and a half years old and his sleep pattern is worse than a newborn baby.

I find it mildly amusing that, while pregnant, people were warning me how difficult the first few months would be because of the disturbed sleep - they used the word "months".  It wasn't until after his birth and into his first year that I heard some parents telling me their children had taken years to settle into a more sociable sleep pattern, but most of these were looking at this from the perspective of (now) having teenagers, so while they fully empathised with our situation, even they were past the point of being in regular possession of grey faces and bags under the eyes to rival balloons.

Over his two years of life, we have been given numerous suggestions for what might be causing Adam's disturbed sleep - the first was sensory deprivation and that his dual hearing and visual impairment meant the darkness and silence of nighttime was the equivalent of this because even the ordinary sights and sounds that he may pick up would be significantly reduced.  Then the suggestion was that his asthma and the resultant coughing was keeping him up (this one is certainly and obviously true from the number of middle-of-the-night hospital runs we've done).  But finally, and recently, it was suggested that Adam's delayed social skills related to autism might be contributing to the disturbed sleep.  He may be unable to naturally learn the usual social skills a child develops to understand that when the house is dark and quiet this means his family are asleep and so should he be.  This was the first suggestion the autism might be a factor.


But just this week, during a marathon of hospital check-ups (preplanned because it was the first week of my college holidays so without commuting to Nottingham, it was easy to get around his consultants in one block) we were asked what seemed to be a very simple question by a nurse-practitioner filling in for one of his consultant's who was on sick leave:

"...And how does Adam sleep?" she asked innocently.

By the time I *stopped* laughing and asked for a definition of the word "sleep" she was smiling too.  

She began to quiz us on Adam's sleep patterns, when and how often he wakes up and when she learned that he can be awake and needing us up to every half an hour through the night, most nights of the week, she made the most amazing suggestion:

"What do you know about Melatonin?" she asked.

When we shook our heads, she went on to explain that Melatonin is the natural hormone produced by the body which regulates our sleep patterns and that it is well known that people with autism are extremely likely to produce less melatonin than other people without the condition.  She said that Melatonin supplements are available so long as the individual meets the criteria (as in significantly disturbed sleep on a constant basis) and of course is known to be autistic.  She suggested that we could consider this as an option if we wished and then discuss it with our consultant at our next appointment in twelve weeks time....then she started to laugh as we said:

"Oh no, there's nothing to consider.  Now please.  Preferably yesterday but definitely today and certainly not tomorrow!"

Taking one look at Chris's grey, exhausted face (he's been doing all of the day and night duty for the last three weeks because my broken foot prevents me easily or quickly getting to Adam's room at night) she offered to go get one of the other consultant's who would briefly discuss it with us.  

We then learned that if Melatonin is going to work, then it's going to work quickly and if it isn't going to (because this isn't the root of the problem) then we will also know very quickly.  For this reason, he agreed to give us a twelve week trial of the hormone but assured us that we would know inside three weeks if it was going to help Adam or not.

It took us *at least* half an hour to get to the chemist!

And that night, the miracle began.


After dinner, and as directed, we crushed a Melatonin tablet, mixed it with warm water (not the best solution, yogurt works better as we discovered on the second day) and gave it to Adam.  Admittedly, he was already very tired so it wasn't too surprising that he was starting to nod inside half an hour (the ideal time to give it is an hour before bed).  But here's the thing:

Adam fell asleep at 7:30pm and he slept, without disturbance and without even needing Dumbles until 4:30am!!  

By this point, he was wide awake and bouncing:

"Mummy, Daddy, is it morning yet?  I've had SUCH a good sleep!  I'm quite certain it's time to wake up!  Mummy, Daddy come now please! Right now!  At once!  This instant!  I Am Awake!"

We weren't quite so convinced it was morning as 4:30am is 4:30am no matter how much sleep you've had, but then we looked at the clock and realised it wasn't 10pm or midnight or even 2am as we've come to expect but 4:30!  

Adam had slept for NINE hours!  NINE!

What WONDROUS miracle is this????

So yesterday, I started doing some research. (Yes, I did give my child a drug *before* researching it - in the circumstances, wouldn't you?!) I found the Autism UK website (http://www.autism.org.uk) where they had published an article stating that:

"Learning to sleep through the night is something all children have to do. But for children with autism, it can often be a difficult and seemingly impossible process. This, in turn, can have an enormous impact on their families. This guide explains why your child may have a sleep disorder, and what you can do to give them, and you, a more peaceful night...

By the age of one year, most children should be sleeping through the night. If after that time your child is regularly unable to sleep or if they have a period of good sleep which is disrupted then this constitutes a sleep disorder. It is important to be aware that all children are likely to have brief periods of poor sleep after illness, during holidays and festivals like Christmas or during periods of particular stress, such as exams or if somebody close to them is ill. After events such as these a normal sleep pattern should be established again within a few days. " Source: Sleep and Autism: Helping Your Child (Autism UK)


The suggestion we had previously received on social cues was included as they said:

"Children with autism may have difficulty understanding why and when they need to sleep. Problems with social cueing - that is learning why and in what order things should happen are common in autism and this may mean your child does not make the connection between their family going to bed and their own need to sleep." Source: 
Sleep and Autism: Helping Your Child (Autism UK)

But then came the key part:

"Melatonin: This is a hormone secreted by the pineal gland which has been shown to regulate sleep patterns in animals. There have been studies conducted which have shown that taking melatonin supplements can help to ward off jet-lag after long journeys. It is also thought that in children with autism, their patterns of melatonin secretion may be irregular so it is not that they don't produce it but that they don't produce it at the right times of day." Source: 
Sleep and Autism: Helping Your Child (Autism UK)

This really felt like an absolute EUREKA! moment (and yes, if I had been in the bath, I would have been tempted to jump out of it...) because this just makes sense. We knew *something* was waking Adam up and despite wondering about any combination of sensory deprivation, social cueing, asthma, nightmares and the desire for the comfort of Dumbles, there just seemed to be something we were missing because no matter *what* we did in an effort to comfort him, Adam was still waking up.

But the first night on Melatonin? Nine hours sleep. The second night? Admittedly there were two wake-ups, one caused by a rogue cat rustling about on the windowsill and the other by an asthma related coughing fit, but after falling asleep at 7pm, Adam stayed in bed until 6am.

Yes, you read that right: ELEVEN hours of sleep.

I haven't had that much sleep in nearly three years!

Do you have any idea how much better we feel today? There is some small part of us that is beginning to feel vaguely human again, and this after just two days.

Is this our Christmas miracle? If so, then Happy Christmas, because this is fantastic and could truly revolutionise our lives. That simple miracle of sleep only seems simple when you can get enough of it.

So, a toast to Melatonin!

And Happy Christmas :-)

Sunday, 1 December 2013

Here we go again...

On Friday afternoon, Adam started dribbling with cold.

By Saturday morning, he started to cough.

By Saturday afternoon, we were giving him inhalers - just in case.

By Sunday evening, he was coughing so much - and so continuously, that he emptied his tummy all over me.

By 2am Monday morning, both Chris and I were sitting on his bedroom floor -

Giving medication...watching...waiting...soothing...holding a small hand as it was pushed out of the bars of his cot, searching for Mummy.

By 4am, I was on the phone to Shropdoc and at their direction, by 4:30am on the way to A&E.

By 5am, a doctor had cheerfully announced Adam was definitely wheezing and Adam was put onto a nebuliser.


In the background, I heard the nurse ringing the children's ward cheerfully saying,

"We have a young man here, who I understand is well known to you, Adam Cheshire...?"

In the background I heard a good natured chuckle before,


"I'll print out his notes and send them up."

By 5:30am, we were on the paediatric ward - again.


Just two weeks after the last time.

"We'll keep him in, just for observation, but we can't hear wheezing, he doesn't seem *that* bad...?  Are you sure it's not just an upper respiratory cough caused by cold...?"

Once again, I explained Adam's history, his symptoms, the fact that a cough is the first sign - not the last.


And that there is a cough....and then there is a cough.

This cough is deep, bronchial, bends him double with the force of it, leaves him gasping for air in between coughs.  This cough is continuous.  This cough is so deep that my baby - my toddler - ends up vomiting from the violence of *just* a cough.

This cough - as I have explained so many times before - is the prelude to my baby going downhill and quickly.  In the past when I have thought this was *just a cough* and have kept him at home, I have ended up on the phone desperately begging for help when it becomes clear it is so much more than *just a cough* and I know my baby needs help...

NOW.

So no, it isn't *just* a cough.  And no, it isn't *just* a cold.

And yes, as his mother, I do know him best - thank you for recognising that.  Thank you for admitting him *just* for observation...

...observation that lasted for forty-eight hours in the end.

But it was *just* a cough.

And so once again, I move into hospital with my son.

I camp on a hard cot covered in plastic wrap, a thin sheet and a seemingly thinner mattress...and I am incredibly grateful for it because I will not, cannot, leave my son alone in hospital.

In a brief, sudden sort of way, I become friendly with other parents camping beside their own children's beds and we exchange, "...and what are you in for?"

In sadness, I walk beside the rooms containing tiny infants hooked up to wires, machines, monitors - with radios playing in the room to simulate a family environment.  I see tiny babies cocooned in sausage shaped blankets wrapped around their whole bodies to simulate a mother's cuddle.

I watch nurses, rushed off their feet, but taking time out of their schedule to come into those rooms and spend a precious twenty minutes holding, cuddling, crooning to those babies.

I feel so sad when I see their families come in to visit for such short, precious times and I wonder at their circumstances.  I see one young mother trying to alternate between her busy, healthy toddler who wants to play in the nursery and her desperately ill baby in one of those rooms.  I cannot imagine how torn she must feel.

And I make my cup of tea, and try to entice my son into playing, reach through the bars of his cot to stroke his head, hold his hand and - when he will let me - I bring him out to hold him...until he thrashes to be allowed to return to where he is comfortable.

Then it's time for medication.  I distract my son while the nurses wrap a plaster around his finger and toe to take his "Sats" (pulse and blood oxygen levels).  I soothe him while they probe his ear for a temperature.

I hold him down, restraining thrashing limbs and kicking legs while they place his "Spacer" device onto his face and for each of ten puffs of his inhaler, count to ten, smiling, trying to soothe him, distract him...comfort him.  To suggest to him that such a thing is normal and good for him.

While I know it is as far from normal as two-year-old experience should ever have to be.

I hold him on my lap for the twenty minute saline nebuliser - I hold his thrashing body as best as I can, one nurse holds his arms and legs as he kicks, lashes out and another nurse holds the nebuliser onto his face...that was the worst one.

By the end of it, I am apologising for the bruises they are sure to have sustained.

And I am explaining yet again that my son is likely autistic and doesn't know his own strength, doesn't have the social skills to understand his actions.  Simply doesn't understand what is happening to him.

And once again, it breaks my heart.

Finally, a doctor briefly listens to your chest, takes the nurses word for it and says Adam can go home.  With a cheerful smile he says, 

"Feel free not to return.  We'd really rather not see you again....!"

We wait to be discharged.  Hours upon hours upon hours before finally, the medication is delivered from pharmacy, the discharge letter printed and all of this precisely five minutes after Adam has fallen asleep peacefully in his cot....

Not until two hours later is he ready to go home!




I push Adam's pram out into the fading evening light and the fresh late Autumn airs smells strange - there is no disinfectant in the air, no sounds of the institution, no beeping of monitors.  It all feels unreal and I marvel again at how quickly I get institutionalised.

I take you home, treat you to McDonald's - which of course you barely eat as you're not eating much more than fumes at the moment.  But it's ok because at least you're out of hospital.

I take you home and cuddle you into sleep, dosing you with inhalers through the night and watching, watching, watching to make sure you are safe.

Nobody gets much sleep that night....or in the nights following.

This week, we stay home from college as I try to protect you from more bugs that always circulate nurseries as children gather there.  Night and day, day and night, my husband and I take turns to dose you with medication, to comfort through the gasps and coughing and to worry as you refuse to eat more than a mouthful or two a day.

By Thursday, I decide to cheer myself up and hang some Christmas decorations early...and as I am balancing on a step tool....it gives way and I fall...landing awkwardly on my foot...

"It will be fine I said, a bag of frozen peas and some elevation will sort it out...."

I know it is more than likely broken, I recognise the pain from a similar injury fifteen years ago but remember that then, my Canadian doctor had to be convinced to X-Ray it because if I could walk, then it couldn't be broken.  After refusing to leave her office, she finally referred me for a non-urgent X-Ray where, four weeks later, they confirmed my foot had indeed been broken...but then sent me away because there was nothing they could do about it anyway.  We don't do anything with fingers and toes they said, just wait.

So this time, already tired from so many fights, I decided it would be fine.  I would be fine.  It would be better in the morning...

The next morning I try to get out of bed and still can't put any weight on it.  Hobbling to the bathroom, I am crying out from the pain and know I need to get it checked.  I cannot ignore this.

One more visit to A&E later, an X-ray and I'm in a plaster cast from the knee down for six weeks.

I cannot drive.  Cannot take care of my son alone because I am dependent on crutches so cannot lift him or rush to him if he needs it, cannot do the most basic things for him from preparing food to changing his nappy.

I am excused from college lectures on the basis of necessity.

My husband has to take unpaid parental leave from work to allow him to care for us both.

He waits on me hand and foot and tries to hide his exhaustion as he suddenly becomes Dad, Mum, Day Carer for me, Day and Night Carer for Adam...all while fighting a cold or bronchial virus himself.  

I keep asking him how he is coping, is he holding up?

"Ask me in six weeks," is his stock reply.

Happy Christmas.  No really.



Saturday, 23 November 2013

Today

Today you have smacked me.
Today you have pinched me.
Today you have put your head down 
and run into me full force
smacking your head into my lip

Today I have told you, "NO!"
Today I have signed, "NO!"
Today I have said, "Naughty!"
Today I have signed, "Naughty!"

Today you have SCREAMED.
Today you have cried.
Today you have picked up 
and thrown your toys
at me, at the floor, at the dog.

Today I have taken your toys off you.
Today I have locked them away.
Today I have turned off the television.
Today, in desperation, I have turned on the television.
Today I have put you in "time out".

Today you have launched yourself at me saying, "HURRO!"
and driven your flailing hands into my windpipe.
Today you have spit your food on the floor
Today you have thrown your cup of milk to the ground
and I have wiped up the spills.












Today I have told you I love you
Today I have cuddled you
Today I have kissed you
Today I have carried you on my hip
and wiped your tears away.

Today I have felt sorry for myself
and in one breath I have said,
"I wish we didn't NEED all this help!"
and in the next breath have said,
"But I am so glad we have all this help.
I am so glad it's available."

Today I have cried
Today my husband has hugged me
Today I have sobbed, "Why? is it so hard?  
Why did we draw the short straw?"

Today my husband has held me and said,
"There is no why; it just is."
Today my husband has said,
"There is no easy answer 
and the truth is...
It will probably get harder."

Today I have been angry with you.
Today I have wanted to "fix" you.
Today I have cried over you.
Today I have loved you.

Today I am your mother.
Tomorrow I hope will be better.

Sunday, 10 November 2013

All I can see at the end of the tunnel....

When I was in my early twenties and in university (for the first time!) I bought my first Mac desktop. I was quite delighted to learn that one of it's quirky settings was that I could change the start-up tune it played when I switched it on.  So, not content with the traditional "BONG!" I discovered that I could have my Mac sing, in a very deep mournful voice:  "All I can see at the end of the tunnel...are the headlights of a fast approaching train...."  My roommates and I found this to be immensely funny...for at least a week until they started to hate me.  (It still took me quite a number of months to change it though as I found it funny for far longer...)

At the moment, I can't help being reminded of this rather mournful and black little tune because this month has felt a bit like that.  First there was all of the usual stress of starting the new college term, getting back into commuting to Nottingham with Adam and living in two places at once, while transporting a toddler between the two.  But then, he started to get sick - and when Adam gets sick, he does it with style.

First it was a cold which, in twenty-four hours, turned into a massive asthma attack that meant I was spending hours on the phone trying to get him out-of-hours medical attention before finally getting him to the hospital at midnight on Saturday night (that was a couple of weeks ago).  A course of steroids, antibiotics and huge numbers of inhalers over the next few days sorted him out and a few extra hours in bed for me to recover from our midnight antics meant I was just about back on my feet again too.

Adam had just about recovered from that one when he started to vomit.  This time, it was a spectacular tummy bug which left him wrung out, unable to eat, barely able to drink and clinging to Mummy for around three days.  During this time, because he was completely unable to keep anything down, we weren't able to give him his prophylactic medication (which is designed to prevent asthma attacks) because it is mixed with yogurt before he goes to bed at night.

Last Sunday, he had just about stopped being sick, but by Tuesday lunchtime, he started to cough.  It took less than twenty-four hours for this to develop into another massive asthma attack.  A phone call from the college nursery during our formation group meeting had me throwing all of our clothes and possessions into the car as quickly as possible and speeding down the motorway to get him to the doctors.  Unfortunately, the only appointment we could get was with one of the few doctors who we don't know well so who also doesn't know Adam's very complicated medical history.  It was quite a frustrating appointment for me but in the end, she did reluctantly agree to give Adam more steroids but only at a reduced dose to what he normally has.  Unfortunately, as the dosage of this medication is based a child's weight, reducing the dose only reduces the effectiveness.

Normally, once Adam starts steroids, the improvement is dramatic and, if you've seen the Calpol adverts, you would never know anything had been wrong as he behaves much the same way.  Unfortunately, this time, whether because of the severity of the attack or the reduced dose of medication, Adam only went downhill.  By the Thursday morning, he was just sitting on his knees in the middle of the lounge floor gazing blankly at the television and coughing continuously.  Now in itself, this may not sound too bad but this wasn't "just" a cough - it was a deep, barking, bronchial cough that turned him inside out and was so frequent that he struggled to catch his breath in between coughs.  Eventually, he was gagging and vomiting because the cough was so deep and so continuous.

I rang ShropDoc at 6:30am who immediately directed me to give him another huge dose of inhalers, on top of what had already been given and, if there was no improvement, to ring them back inside ten minutes.  These additional inhalers, brought him up to a total of sixteen puffs of ventolin inside an hour an a half and there was no improvement.  Another phone call to ShropDoc and we were bundling Adam up with a pre-packed overnight bag and rushing off to hospital.  By 7:15am, he was having an emergency nebuliser, having already coughed his way into vomiting in the consulting room but even this made no difference.  On this basis, Adam was admitted to the paediatric ward where we stayed throughout Thursday and Friday.  Initially, Adam was being given 10 inhalers every half an hour, with very gradual reductions and it took until bedtime on Thursday before it was considered safe enough for him to be brought down to three hourly intervals and overnight before he could go four hours between.  

We were finally able to come home late Friday afternoon and I hoped and thought we were over the worst of it, thinking there must be a light at the end of this tunnel....only to discover the lights I could see were just another oncoming train.  By 10pm that night, both Adam and I were vomiting at regular intervals which continued throughout the night (I'll spare you the other details, but I'm sure you can work them out).  By midnight, Chris was at Asda buying more cot sheets as we had run out and couldn't get through the laundry quickly enough.  By morning, all of us were exhausted and, while Adam had thankfully finished emptying his tummy, he was still as wrung out as a limp rag.  Thankful for Chris's ability to look after him, I stayed in bed for the day dizzy and sick.  Today, I've managed to get as far as the couch to turn the computer on but that's about it.

So please, whoever controls the distribution of lights at the end of the tunnel - could our next one not be a train please?  I think we've had our fair share already.  Cut us a break, please?


Tuesday, 15 October 2013

Is This What God Felt?

Raised as a Christian, I attended Sunday School and Church throughout childhood and during those years, I heard the following message over and over again:

"God sent his Son, Jesus, to earth to die for our sins.  We couldn't ever have paid the price for them so when Jesus died on the cross, because he was innocent, he paid the price for our sins, took all of them away, and because of that sacrifice, we don't have to go to hell anymore and can go to heaven instead!"

There were many years in which I wondered, wide eyed, at the enormity of this sacrifice and focused purely on what it meant for me - I could be forgiven of all the mistakes I made and after I died, could spent eternity in a heavenly paradise.  Yay!  Yes please! I'll have some of that!  Sounds good to me!

Many years later, two and a bit of which have been spent in theological college training to be a vicar, and I now know that the technical term for this description of Jesus dying on the cross is called "Penal Substitution" - essentially this means that God sent Jesus to earth in order to be punished (penal - penalty) for our sins.  He was 'substituted' in our place so although he was innocent, he took our sins onto himself, thus paying the price for them that we could never pay.  This is a very common view among many Christians in certain areas of the church, but I also now know that there are many other ways of looking at Christ's death on the cross.  I also now believe that this view is wrong and that churches which teach it as the only true way to understand the meaning behind Jesus' death on the cross are also wrong.  An extraordinarily strong opinion I know, but allow me to explain why I feel this way:

You see for a long time, there has been one particular bit of that rather glib explanation that has really bothered me and it's contained in the first three words:

"God sent His Son..."

We describe God as Father because this is one of the ways God has been revealed to us in the Bible, with many verses talking about His overwhelming love for us and for creation (the fact that God could just as easily be described as Mother is a whole other discussion so I won't go there now or we'll be here forever).  But the thing is if God is Father then this means God as Parent has that same overwhelming, passionate love for His children as human parents have for their own children.  

I always knew in principle that parents would do anything for their children, but it wasn't until I had Adam and so became a parent myself that I really understood that anything means anything.  I would quite literally lay down my life for Adam if I needed too, I would throw myself under a bus if it meant keeping him safe from being hit by one (an unlikely event admittedly but just go with me here) and I would give up anything I had to if it meant a choice between his welfare or my own.  My point is that my love for Adam means that nothing and no one in this world is more important to me than him.  My love for Adam overwhelms me, consumes me and defines my world.  Because Adam was born, I am completely changed - forever.

So because of this love, I started wondering about some of the things I'd been taught about God and looking at them a little bit more closely.

"God sent His Son...to die..."

I started to feel uncomfortable.  And I thought, hang on a second:  God is Parent.  God therefore loves His Son, Jesus, with a similar but likely even greater, more overwhelming love than I feel for Adam (simply because God is God and so cannot be defined by human emotion).  But God sent His Son to earth...to die???  What kind of parent SENDS their child somewhere specifically to die?

Well you could say military parents come pretty close to that category, after all they know their children are signing up for a job that does come with the pretty serious risk of death.  And if you look at war memorials all over the country, it's pretty common to see the Bible verse inscribed, "Greater love hath no man than this than to lay down his life for his friends." (John 15:13, King James Version)  But actually, I would argue that while military parents know their children face the risk of death, they don't send them specifically to die.  They send them, hoping (and praying) they will return.

So what kind of parent sends their child to die?  What kind of parent is God if He sent His Son to die? Did he really love Jesus all that much or was Jesus expendable?  Was he a pawn in some kind of immense cosmic plan?  Because if He was, then that's not the kind of God I can believe in.  That's not the kind of God I want to believe in.

No.  I don't think He was - a pawn that is.  I think we've got it wrong - or at least I should clarify that I think this interpretation misses a pretty big part of the message.  I do believe Jesus died on the cross and I do believe this was a defining point for us as humanity in our relationship with God but what I don't believe - no longer believe - is that God sent His Son to die.  Because I don't think any decent human parent would ever send their child somewhere to die, I also don't think God - who is infinitely bigger and more loving than any of us ever could be or can ever really comprehend - would ever send His Son to die.  I think the meaning of Christ dying on the cross was a bit more complex than that.  I don't think God ever wanted His Son to die at all, I think that while He knew it was a very real possibility (or even likelihood) that Jesus might die, I don't think He ever wanted Him to die or sent Jesus specifically to die.  I don't believe in that kind of God.

I think God made a decision more years and millennia ago than any of us can ever comprehend.  God committed Himself to a path so radical that even after thousands of years of it tripping off our tongue, we still don't really understand it - freewill.  God granted human beings both the greatest gift and also the deepest curse possible - the ability to make our own choices, an individuals, as groups, as cultures, as countries...as a mob.  Sometimes, we've made some extraordinarily wonderful decisions - Mother Theresa, Ghandi and Martin Luther King Jr. spring to mind - but other times, we've made some decisions that are so horrendous that we should shrink back from the consideration of them - The Crusades.  The Holocaust.  The Death of Christ.

You see, I do believe that Jesus - God Incarnate - came into our world but I don't believe He came to die.  I believe Jesus came willingly with a message - He knew it was a risk, and he knew His message may not be accepted, but He chose to come anyway to give us the chance - and the choice.  He came to tell us that God loves us and wants to have a relationship with us.  He came to tell us to love each other and to honour one another by considering each other's needs before our own.  He came to tell us to spend a little bit less time judging each other and a little bit more time loving each other.  He came to tell us we were making some mistakes but he didn't come with a big stick to beat us into submission, he came to show us where we were going wrong and to help us get it right.  He came to ask us to have a relationship with a God who loves us with a passion and in committing ourselves to that relationship, to also commit ourselves to a life where we, "Love the Lord your God with all your heart, all your soul and all your mind and love your neighbour as yourself.  On these two hang all the law and the prophets." (Matthew 22:36-40)  Because that kind of love - if we had accepted it and agreed to let it fill us - would have changed us.  It's simply not possible to be consumed with love and also filled with hate - or anger - or bitterness.  A pure love that consumes an entire heart, an entire soul and an entire mind, ultimately pushes out what is dark because there is no room for darkness.

And what did we do?  How did we react?  Some of us listened, some of us thought what Jesus was saying was a pretty good idea.  But some of us were uncomfortable with what Jesus was saying.  He was challenging the way we were living our lives, the things we were doing, the things we weren't doing and we didn't like it.  Very few children actually like it when a parent corrects them for doing something wrong or challenges them to do something differently, sometimes children throw tantrums when they are corrected and things get kind of out of control for a while.  In this case, some of us didn't like the message so much that we killed the Messenger.  We did something so unconscionable that we can never make it right on our own.  God came to us in the form of a human man and told us we were loved more than we could ever possibly understand...and we killed him for it.

But in that moment, when Christ was hanging on the cross, if He really was God then He could have gotten Himself down, saved Himself from torture and death.  One of the men watching the scene firsthand suggested precisely this (Matthew 27:38) but Jesus ignored him.  Similarly, if God really is all powerful and if God really did love His Son that much, then surely He could have taken Jesus off that cross - why didn't He?  What kind of sadistic parent watches their own child in abject suffering and does nothing?  

But you see, God couldn't have taken Jesus down off that cross.  His hands were tied - by us.  Now don't misunderstand me, I believe God as the all-powerful Creator of the universe did have the literal, physical (so to speak) power to take Jesus down but if He had chosen to exercise that power, he would have undone millenia's worth of freedom.  In an instant, He would have taken away human freewill and turned us into robots, puppets; He would have taken away the essential thing that makes us human - the power we have to decide and then to act.  The power we had when we chose to hang Jesus on that cross.

So instead, the God who had so utterly, completely and profoundly committed Himself to creating a species that had the power to choose, stood by and watched while His own Son suffered in the most appalling way imaginable.   I think in that moment, God was caught up in a storm, a storm so overwhelming that it shook the universe because, as a result of a decision made more millenia ago that we can imagine, God was powerless to save His Son.

So why on earth am I writing all of this?  This is hardly the usual subject for a blog about Adam which sometimes details his struggles, and at other times details the love and joy we experience in our lives with him.  I'm writing it precisely because these ideas that have been floating around in my head for quite some time now have crystalised into sharp focus for me.  

When I wrote of my experience with one of Adam's overwhelming tantrums yesterday, I spent some time reflecting on it afterwards.  And I realised something that, for me, really felt quite profound - when I was sitting on the floor with my arms wrapped around my son as he screamed, thrashed and was completely taken over by an experience very likely triggered by Autism; he was overwhelmed by a storm that he could not control and that I could not control.  In that moment, I would have gladly changed places with him and endured his suffering if it meant taking it away from him...but I couldn't.  I could have chosen to abandon him to his suffering or rebuked him for his "bad behaviour" - but of course there was absolutely no way that was going to happen because he wasn't "behaving" badly.  The fact that he was screaming, flailing and hitting me was not a symptom of naughtiness, it was a symptom of illness and suffering.  My son was suffering and as a result, I was suffering as well.

So I did the only thing I could have done: I wrapped my arms around my son and I endured the storm with him.  I sat in the middle of that storm and I told him over and over and over again that he was safe and that I loved him.  At that moment, I'm sure he didn't feel safe because circumstances (an illness) beyond his control were overwhelming him, but because I knew what was causing it, I also knew that eventually, we would come out the other side and he would be safe.  He would be safe because I was right there with him and there was absolutely no way I was going to leave him.  

And so, finally, I come to my point:  I wonder if that's how God felt when His Son, Jesus, was in utter agony, hanging on that cross and dying.  Did He feel as I felt in that moment?  Did he feel overwhelmed by the storm of human decisions to the point that all He could do, all He could focus on was to wrap His arms around His suffering Son and say into His ear, "I love you.  You're safe.  I love you.  I'm here.  We're going to get through this.  I love you."  And as His Son suffered, did God's silent tears drip down onto His head and did His Son have any awareness that His Father was crying over Him in the midst of the storm?  When Jesus cried out from the cross, "My God!  My God!  Why have you forsaken me?" (Matthew 27:46)  Was this similar to the screams of utter anguish my son was letting out yesterday?  Screams in which he could no longer hear me, could no longer feel me, could no longer do anything except be caught up in the storm?  Screams in which I'm sure he was convinced he had been abandoned?  And, in response, was God actually saying, "I'm here, I love you, I'm here."  

I believe God was doing precisely that and I think the Bible makes this pretty clear:

"Then Jesus cried again with a loud voice and breathed his last. At that moment the curtain of the temple was torn in two, from top to bottom. The earth shook, and the rocks were split. The tombs also were opened, and many bodies of the saints who had fallen asleep were raised." (Matthew 27:51-52)

What moment of profound parental love could ever be more apparent?  God's Son cries out in desperation as he dies...and the entire universe shakes.  That's not a God who sent His Son to die, that's a God who is grieving as His Son dies.  That is a God who would stop the universe if He could ease His Son's suffering but a God who knows that if He does so, then he alters the entire course of human and cosmic history.

But still, what's the point?  If God was really all that powerless, then why should I believe in Him; why should I follow Him?  Unsurprisingly, I think the ultimate answer to that question lies in the Resurrection - but perhaps not precisely in the way you might at first think.  I could focus on the simple yet amazing fact that God is so powerful that He brought Jesus back to life again after He died.  But for me, it's more than that.  Yes, God is powerful enough to conquer death and that's pretty amazing in itself but the most simple and yet profound thing about the Resurrection is this:
Jesus came back.

God came back.

In the words of one ordinand (a person training to be a Vicar) from Westcott House in Cambridge:

"And you could imagine this story was saying: the whole of religious history, of human history, of cosmic history was designed in order that God could come to us as a friend, face the worst we had to throw at him, and somehow stay with us.  And then?  Then, He shares breakfast with the friends who betrayed Him.  So he offers them a reconciliation that doesn't even need them to say sorry first.  Well, it's ludicrous.  But I realised that, to me, it's so ludicrous, it rings true."  ("Glimpses of God", Westcott House, 2004)

For me, this is the truth about Jesus death on the cross (or the Atonement to use the theological term).  God came and walked among us; we didn't listen when he sent people to tell us about Him (prophets) so instead, God sent His own Son to us - surely they'll listen to My Son? (and funnily enough, Jesus told precisely that story in one of His parables before He died, you can find it in Matthew 21:33-42)  But just like the tenants in the parable, we still didn't listen and our not listening got so big that we killed Him.  And as He died, God wrapped his arms of love around His Son, just as I wrapped my arms of love around my son while he was suffering, and He whispered as I did, "I'm here.  I love you.  You're safe.  I'm here."  

And then, he did the most amazing thing of all - something that proves He is God because He has more ability to love and to forgive than any human being (including myself!) has:  after watching His Son die in the most appalling, terrible way, God came back to us and said, and keeps saying to us:  "I'm here.  I love you.  You're safe.  I'm here."

Now that's overwhelming, passionate, parental love.  That's the kind of love that no storm will ever shake.  That's the kind of love that overwhelms, subsumes and recreates destinies.  That's the kind of love that would prompt a parent to allow themselves to die if it meant saving their children.

That's the kind of God I can believe in.


Cradling my desperately ill son in hospital




Monday, 14 October 2013

...and then all hell broke loose


There are moments in Adam's life when he changes - in a split second, in an instant, in the moment between one breath and the next - it's a transformation worthy of Jekyll and Hyde.  The smallest, seemingly most insignificant thing can change him from a sunny, cheerful, adorable toddler into a screaming, flailing, thrashing monster.  It can be a change in routine, a suggestion he didn't expect or doesn't like, waiting for something a moment longer than he would like to, a person walking into his eyeline, or out of it.  He doesn't even have to know who they are.

Today, I picked him up from nursery and he was, as usual, delighted to see me.  Pumping his arms, grinning, shouting, "Yay! Yay! YAY!"  We walked to the car in the pouring rain and went to secondary school to wait for his big brother.  Through a mixture of circumstances I never quite got to the bottom of, we had to wait nearly half an hour for his brother to arrive, rather than the usual ten minutes.  During this time the rain went from heavy to waterfalls sheeting out of the sky, thundering down over the car as the windows steamed up and we waited.  Even for me it started to feel suffocating, for Adam I believe it was akin to sensory overload.  He began to make his feelings quite clear.  Once the tantrum began, nothing could stop it.  By the time I was sitting in the backseat, reaching over and cradling his head in my hands to cushion it from injury as he banged it over and over again into the headrest of his carseat, I was praying for his brother to arrive or for the rain to stop.  Neither occurred until past the point of no return.

Finally, brother arrived and we managed to drop him off where he needed to be.  It was then a very slow procession home, involving constant judging of how bad the tantrum was and when I needed to stop by the side of the road standing half in and half out of the rain, trying to calm Adam down enough to safely continue another couple of miles.  By the time we pulled into the road leading to our house, my nerves were frayed and then, in an instant, the switch flicked.  Once again, Adam was happy, babbling and chuckling to himself in the backseat.  Suddenly, all was sunny in his world.  Jekyll and Hyde.  

As we pulled into the driveway, it took me a minute to be able to get out of the car to unload it and take Adam into the house.  Once we got inside, Adam was absolutely cheerful and content.  Tugging me over to the piano, he showed me how to play his new masterpiece (thumping of keys appears to be the key factor required) we shared some cuddles and I turned on the bacon intended to go into the recipe for our evening meal.  I went back into the room for some more piano, then as Adam was contentedly playing on his own, I went down on my knees and refilled the emptied box of foam blocks so we wouldn't be tripping over them.  Just as I finished filling the box, Adam noticed what I was doing.  He came over to me and, smelling a certain key odour, I said and signed, "Adam, nappy time."  

...and then all hell broke loose.

The happy, cheerful toddler disappeared and a raging monster took his place.  It started with screaming.  In a heartbeat it became flailing of limbs, thrashing on the floor, arching his back up, his heels down and banging his head on the floor.  His face was bright red as he screamed his rage.  For his own safety, I picked him up and attempted to wrap his body around my own to contain his thrashing limbs and prevent him giving himself a head injury.  Slowly.  One step at a time. We walked upstairs.  As we did so, if it was possible, the tantrum got worse.  And worse.  And worse.  The only way I can describe it is to say that one step further and Adam would have been having convulsions.  

There is one level at which any toddler has tantrums and when they occur, they consume a parent's world.  Then there are Adam's tantrums which swallow it up, overwhelm the world and leave me clinging to the life raft of holding him in the safe restraint position (with the back of his head against my chest, sitting between my legs and my arms crossed over his chest in a way that contains but does not suffocate him - he can move but cannot get free).  I sit and I cling to my sanity as I restrain my child while he screams, thrashes, hits and claws me, bangs his head against my chest and comes to the point that his whole body is flushed red, soaked in sweat and utterly hysterical.  And as we sit there, I say directly into his ear, over and over again, "You're safe.  I love you.  You're safe.  Mummy loves you.  You're safe." 

The tantrum goes on and on and on.  The minutes tick by and my whole world is full of hysterical screaming.  I can smell tea burning downstairs and I worry it will catch fire but I cannot move or leave my son - to do so would be to risk serious injury to him.  So I sit, every time a flailing limb breaks free to hit me, I gently but firmly wrap my arm around him again and keep talking, "You're safe.  I love you.  You're safe.  Mummy loves you.  You're safe."  If he notices my silent tears falling into his hair, he gives no sign of it.

Thirty-five minutes.

That's how long it takes for the hysterical screams to quiet into sobs, for the flailing limbs to go limp in exhaustion and for my baby to collapse against me utterly spent.  I take the risk and slowly and gently turn him around, look into his eyes and tell him once again that I love him.  His huge blue eyes fill with tears and his head sags down onto my shoulder as he wraps his little arms around my neck and his legs around my waist.  He says nothing, makes no sound, he has nothing left to say.  We sit like that for a long time as our dinner burns.

Eventually, I crawl to my feet, cradling Adam in my arms as he continues to hide his face in my shoulder and slowly we walk downstairs.  With him sitting on one hip, I remove the destroyed tea from the cooker, dump it in the sink, open the window and door and start a second batch of food.  Finally, half an hour later than he would usually eat, I take Adam to the table.  Seeing a single piece of pesto pasta on his baby fork approaching his mouth, he begins to scream, tries to stand up against the lapbelt of his high chair and throws his body backwards as the chair creaks in protest.  I sit there offering the single piece of pasta waiting.  Eventually his body releases some of the tension and he opens his mouth just a little bit.  I place the pasta against his lips where he tastes it, then gobbles it and the rest of his dinner down.

As I feed him, I am numb.  I sit at the table in that conservatory and I cannot think, I cannot pray, I cannot dream of  what the future might hold.  I am blank.  My husband comes home from work, sees a cheerfully eating child and asks how we are, expecting a smile in return but quickly realising he won't be seeing one tonight.  Quietly, he listens to the story and takes over in time to give Adam his evening medicine, bath and stories.  I sit here at the desk in our bedroom and I write - and as I do, I can see the piece of chart paper stuck to the side of our wardrobe, left over from a long ago essay on which I personalised part of a Psalm to include Adam's name.  I read, with tears in my eyes:

"For God created Adam's inmost being; God knit Adam together in my womb.  I praise God because Adam is fearfully and wonderfully made; God's works are wonderful, I know that full well."  Psalm 139:13-14

Underneath, in writing that is now fading from long exposure to sunlight, I've written:

"Just as he is."