Friday, 28 October 2011

The Disability Diaries (The Life of J1) : The Life You Must Say Goodbye To

A friend of mine, who also has a child with disabilities, recently sent me the piece of writing that follows.  Unfortunately she did not write it, and did not know who had originally penned it, and I sadly have been unable to find out who did.  If I ever do, I will of course update this to reflect the author and if I ever had the chance to meet them I would love to shake their hand for so eloquently saying what I have been thinking for many years.  So to the unknown author, thank you, I hope to find out who you are one day.
Italy and Holland...
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangel...
o David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thursday, 27 October 2011

MIA in the Blogging-Sphere

Although I have only been blogging for about 3 months, the fact that I have been unable to do it for the last two weeks has been very noticeable.  I had started to be able to get to sleep quicker when I went to bed, the thoughts in my head having been laid to rest on, well I was going to say paper, but really a lap top screen and it was giving me a tiny piece of time for me in a week where as a mother and wife you are constantly looking after everybody elses needs. 

However, the unforeseen events of the last two weeks has required 100% of my energy to be outlaid on keeping my family going, as my poor husband has been through the mill healthwise, and anyone with children knows, life has to continue exactly the same as normal.  So with the added stress of worrying about someone you love not being in tip top shape, keeping up with a baby that came down with a sickness bug, followed by a cold that just won't quit (i.e very sketchy nights requiring a lot of sitting up soothing), getting the cold myself and the family gathering that seemed like an awesome idea a month ago pending, blogging had to be the thing to give.

And I have missed it.  I still find myself jotting notes down but just not seeing the opportunity to get it all out, out of my mind but having just cried at a stupid TV programme, whilst wiping my very sore nose and feeling a little sorry for myself in general today I thought that I had better schedule some time in now, as I think it will help, to just feel like I have had just 30 minutes to myself.

And so back into the blogsphere I return, and now I am back I will attempt to stay around, maybe it won't be possible on a daily basis, but maybe just a couple of times a week for now, and I have plenty of things I want to post about so no sitting at the screen wondering where to start for a while now...


Sunday, 16 October 2011

Parents at the Park (Monday Madness)

With this beautiful October weather still gracing us with it's presence, it has been like having 'bonus' days for getting out in the fresh air.  None more so than for a trip to the park. 

Now I feel very lucky with the park facilities near to where we live as there are several choices (probably due to it being a seaside resort) but my favourite is one situated on a big massive playing field (over run by the local football club on weekends but fine throughout the week).

J2 can run his energy off (relatively) safely (may have to occasionally dodge the odd dog poopy from bad dog owners that do not clean up, but for the most part people are pretty good here) as free from cars and roads nearby as well as on the playground facilities.

I think I appreciate the fact that I can take my toddler to the park, such a simple occurrence for most, because it has never been something I can do with J1.  The few times I did try and just 'carry on' as I would with an able bodied baby, it was just made screamingly obviously that he was not an able bodied baby and I would return home in tears.  The times I tried to go with friends, for fresh air or change of scenery for us both, just having my baby sitting watching everyone else charge around, again just turned into a traumatic event emotionally. 

So having the park on my list of things to do, for free, to entertain the energy ball that is J2 - is still very much in novelty phase and one of my (in the words of Sister Maria) 'favourite things'!  We have a lovely old time, my little spit-fire can run his little legs off without me having to say 'Mind the unit / breakfast bar / table!' and climb and whizz up and down the slide as many time as his little legs can carry him.  

Luckily he has a few 'favourite' playground articles that he favours and these are the smaller things, he approaches the other things but as J2 doesn't have the best attention span, the minute he realises he can't climb up something he loses interest and goes back to what he can achieve.  Even so, he has a little try and I let him (ready to catch of course!).

However, I am quickly learning that this isn't the general 'way' of the playground / park, which seems bizarre to me.  We have been frequenting the park a lot over the last two months and not one visit goes by where I do not end up thinking 'For pity's sake, get off the kids back and let them have fun!'  There is always (actually usually more than one) adult, constantly moaning, checking and nothing short of bawling at a child for doing nothing more than, well, playing. 

It baffles me?  You bring them to the park to play, run, climb, shout, laugh and even scream with excitement and boisterousness?  Why, in that case do you cause yourself a hernia and I am sure take years off of your life span, stressing at every move they make?  Now I am all for a cautionary parent making sure that bones are not going to be broken or harm come to, but seriously, one parent actually dragged their child (who believe me, had done very little wrong) away (bawling of course) because they were having 'Too much fun!' WHAT?

So this is definitely the 'maddest' thing I have come across this week.  And maybe next time you are taking the kids to the park, if you find yourself hurling yourself to save your child everytime they take a solitary step in the playground, just remind yourself why you brought them and be thankful that your child can and wants to play, even if it is a little rough and tumble. 

And above all, enjoy it.  Enjoy watching them being children.


Friday, 14 October 2011

Featured Blogger : Our Footprints on the World (Feature Friday)

Although today would normally be my 'Family Friday' blog post, I am deviating this week and instead doing a 'Feature Friday' post, featuring another fantastic / amazing / wonderful blog. 

This week we hook up with Kelly-Marie and her eye-catching blog at :

Hello , I am Kelly-Marie, mummy to my gorgeous little boy Joshua 'aka Joshy' who has just turned 5 months old, and I am wife to my lovely newly wed husband Matt ! These guys are my life and are so special to me, that's why I love to blog about them all the time.

On my blog you will find lot's of photographs and stories about our everyday life. I love photography and with my new camera our life is always captured.

Kelly-Marie, Matt & Josh

Blog: Our Footprints On The World

Kelly has the most amazing eye for taking photographs and displays them, usually with a little twist on her blog, which is well worth a visit to see!  Visit by clicking on the button on the right of my blog page or simply click here

The Power of The Photograph (Thoughtful / Thankful Thursday)

When my mum was my age (early thirties) and I was just a wee, little [cough, who can I hear laughing?] girl my mum got into the hobby of photography.

She had a wicked camera that made the most fantastic shutter noise, a variety of lenses, filters that would change the colour of the photo which I thought was nothing short of magic (of course all done digitally nowadays) and all the kit to develop her own photos. 

I even remember her joining a Photography Class and getting to go to Cambridge for the weekend (obviously I didn't know it at the time but giving her some very deserved and needed 'me time') and it must have been a fun weekend because she still talks about it now with fondness (they were taking pictures of the sun rising over a very beautiful Manor House, and got chased off the land whilst trying to pack up camera's and tripods and being chased down by the Game Keeper and his dogs!)

We spent many weekends out taking photographs of anything and everything, usually we would bike ride to a nearby location, and believe me where we lived it was nowhere exotic or exciting (see last weeks post A Beautiful Evening for more on that!) and click until the film ran out.  Then we would ride back home and disappear into, what would have been the coal shed but was now the indoor drying room, which had no windows and a line to hang the photos to develop, so was ideal for a make shift dark room.

We had boxes and boxes of photographs.  So I think it was no surprise that I always continued to love to take photos, only the point and click and hope for the best variety, but lots all the same.  And of course none more so than when I became an aunty for the first time (some 15 years ago!) and then a mummy.

However, over the last few years I have taken less and less, I suppose always had my hands full with other things (quite literally, changing bags, buggies etc) and I think that is a real shame.  Because whilst searching out young photos of J1 the other day for my 'Disability Diaries' post I came across the photos of my nephew of when he was J2's age, and I honestly say the only difference between those and J2's are the hair colour.

I was astounded because I have always been a little sad that I can't see any of me in J2, he is soooooooooooo like his dad (which of course isn't a bad thing but it is nice to glance at your child and think, ohhhh I can see part of me there) and that is what everyone says.  But those photographs made me realise he must be like me too and that made me so happy.  So I am very thankful that for many years I was close to being a photo-manic girl!

I think anyone that finds pleasure in photography are very lucky as I always end up smiling when I look back through all those old boxes of photos.  That incident, combined with following wonderful 'photograph genius' blogs like Our Footprints on the World and Holding on to the Little Things have really made me want to get back into taking photographs (thanks girls, you are inspirational!). 

I have a decent digital camera, I started off taking photos with vigour again when J2 came into the world, I just need to get the damn book out and read what it can really do!  And maybe it's time to invest in a computer package that means I can mess around with the pictures once they are uploaded. 

And hopefully I will be able to share bike rides to take photos with my own children one day, very soon.



Wednesday, 12 October 2011

The Disability Diaries (The Life of J1) : Diagnosis Day (or Find Out Accidently)

When we left the Disability Diaries last week I had explained how my little miracle J1 fought his way into the world at just 32 weeks gestation (The Birth and the Beginning of our Journey), how we left hospital with no clue that anything was wrong and despite (with the benefit of hindsight) pointers being there, I was a young, single, first time mother and I suppose that I didn't dare let my mind wander into the possibility of their being anything wrong.

So, after almost a year of questioning, at the very least, the delayed development J1 was suffering I finally got a Health Visitor who wasn't in my house five minutes before she said, yes we must certainly refer you to a Paediatric Consultant. 

My memories of 'what happened next' are sketchy (there has been so many appointments since and specialists seen) but there was numerous appointments in very quick succession where professionals would hmmmm and ahhhhhh and scribble notes down, then leave the room without saying very much.  Although, as mentioned in my previous post, due to a TV programme (of all things) I had happened to watch, in my heart I knew what J1 had.  But my head, my head kept telling me that no one had told me what I suspected and that kept me in a false sense of hope.  I would swing from 'When will I be told?' to 'Maybe there is nothing to tell and it is just delayed development?  Surely someone would have sat me down and told me by now?'

I read lots of stories on the internet and in literature, written by parents about their 'Diagnosis Day'.  They got up and knew they were going to the appointment whereby they would get some information that would change the whole families lives forever.  I was waiting for that scheduled, big day.  Like a letter would come saying Re : J1 Diagnosis Meeting, and I would dress smartly, like a bold strong women to go and receive the news.

But that letter of course never came, well not directly to me as I shortly found out.  Because although sometimes I guess it does work like that, it didn't for us.  Our 'Diagnosis Day' came as a bit of shock to be honest, not from any of the professionals we had been to see, but from a regular Health Visitor check up at home. 

The HV had left her binder of information open on us as I sat opposite her, while she found something else in her bag the letter on top, was, I guess the sort of thing I had been expecting to come through the post (but not quite so graphic) :

Re : J1 - DOB - Confirmed Diagnosis : Quadriplegic Cerebral Palsy (affecting all four limbs and torso) and Myoclonic Jerks (frequent)

It was like someone had punched me in the face, stomach and knees simultaneously.  There it was in black and white.  Plain and simple.  What we had been waiting for.  What apparently had never made it through our post box.  I remember her finishing looking for whatever it was she had been searching for and clocking me staring, unblinking and fixed at the paper.  I guess from my face she sensed something was a miss and put two and two together when I finally managed to stutter 'So, is that my babies diagnosis then?'. 

We then went through the obligatory minute of profuse apologies of having to find out like that.  Of course she assumed that we had been informed by the same letter etc etc.  The long and short of it was it wasn't her fault, our letter had gone AWOL and now I knew.

Now, I knew.

After she left, my baby and I alone again together, I remember watching him sleep for a long time.  He looked so perfect.  He was so perfect.  But the tears didn't come then.  Where do you even start to process that information?  Well I suppose I didn't.  The words kept banging around my head, like it was a large, empty, voluminous space, and each time they bounded off a wall they got louder. 

Until he woke and I had to continue to do all our normal mummy and baby things, feed him, change him, bath him, play with him, sing to him, cuddle him, love him.  All the things we did 'before we knew'.  That day dawned a new era in time for us; the 'before we knew' and 'after we knew'.  That day now etched in stone as 'The day that changed our lives forever'.

Life had to continue, but somewhere along the line as life carried on as normal I had to actually tell everyone that my baby had Cerebral Palsy.  I wasn't ready to do that.

I didn't even really know what that was. 

The Long Learning Road will be next weeks feature. 

Holding Out For a Hero (belated Monday Madness)

I was planning on doing this post for my Monday Madness, however, our own health madness really kicked in with a vengence this week and the weekend saw myself laid up in bed unwell, and then 'The Hubby' got taken into hospital for emergency surgery on Monday and it has been a whirlwind of arranging suitable childcare so that I can visit in the measly hours they allow at the hospital. 

So, pretend it's Monday for five minutes (and when you stop pretending it's Monday and realise it is actually Wednesday you'll be really happy) for Monday Madness.

And what comes 'madder' in an 'excited and bouncing up and down way' than finding out one of your very best friends is going to be on a gameshow on National TV?  And I don't mean a Channel 5 jobby,  I mean ITV 1, on Sunday Prime Time.  Nothing does, thats what!

Now I hear the word 'game show' and think 'why would people?'.  They are usually gaudy, humiliating (some... well a lot) and half the time the prize isn't worth the life long tarnish that you would brush yourself with for being a contestent.  However, this was no ordinary friend, this was Ms L.  There is no way Ms L would associate herself with anything that would humiliate her infront of an audience of, well I assume millions.

And no she certainly did not.  Ms L, has recently got involved with an amazing charity called Bullies Out ( who provide help, support and information to anyone affected by bullying.  Already training to trek up Kilimanjaro with her Hubby and anyone else she can cajoule, er I mean encourage (and this lady is very persuasive) to raise money for the charity she also managed the no small feat of getting an opportunity to win the charity some money by being on a 'worthwhile' gameshow (I know, there are not many of them) called Holding Out For a Hero. 

Wikipedia gives this description :

Holding Out For A Hero is an ITV entertainment programme in which contestants don't win money for themselves, but for somebody else, who they considered to be their hero. The show is presented by Gethin Jones. Every week three contestants compete to win a huge sum of money for somebody else.

And that pretty much sums it up!  And it also sums Ms L up, someone who always puts others first.  Now, of course I am very jealous that Ms L got up close and well, ok maybe not personal with Gethin Jones, but up close but moreover I am so PROUD of her.  I cringe at the thought of what I would be like on a quiz show and under pressure (my neck would flush red, my cockney of cockney accents would get even more cockney with nervousness and my laugh would reach a pitch only dogs could hear) and I doubt I would be able to answer the question 'Whats your name' correctly, but Ms L...? 

No no no, cool as a cucumber, clear, concise, answered her questions correctly and looked fabulous!  Did she win the big big bucks?  Unfortunately no, another worthwhile charity did (and that is what is great about this show, whatever charity is on playing for the money deserves it and even the ones who don't win the big amount get a decent donation from the show) but she gave them a damn good run for their money, she did everything right, lady luck just did not pull out all the stops when it came to the last pick of 'how much the question was worth'.

What's more we finally gave in an told J1 about it on Sunday morning and it kept him excited and happy all day, he was beside himself when he saw her come on the TV and we have had to watch it everyday since!  Happy J1, Happy Mummy!

Friday, 7 October 2011

As I Watch My Baby Sleep (Family Friday)

I thought it was about time I tortured my blog with another attempting at here goes :

As I Watch My Baby Sleep

As I watch my baby sleep
I wonder what's in store
In life for him as he grows
I want to know much more

I want to know if he'll sail through school
If he'll play sports and read
I want to know if he'll care for others
Tend to their needs

Will he be sensitive but a little hard
Or will he be class clown
Will he be a great shoulder
When a friend wears a frown

Will he study or go to work
Will he move from home
Will he be open and talk to us
Or will he roll around and moan

Will he do something he loves
Something for the greater good
I hope he does and it makes him happy
As every parent would

Will he be straight or will he be gay
Either way I don't care
Just as long as whoever he brings home
Isn't a complete nightmare

Will he stand at the top of the aisle
Waiting for a beautiful bride
Who will walk to him and say 'I do'
With us standing by their side

Will children bless his life
Like I have had bless mine
Will he grow to be sophisticated
And enjoy expensive fine wine

I wish all of this as he sleeps
As only a Mother can
And promise to him with all my heart
I'll help him be a strong and honest man

I have been Featured on 1 Epic Mom!

I am very pleased to post that to my complete surprise I have been awarded 'Blog of the Week' by the fantastic Weekend Blog Hop host 1 Epic Mom (

This fabulous fellow blogger has kindly chosen my blog for the recent post 'The Disability Diaries (The Life of J1)' and has written a very sincere and kind introduction.  Please take two minutes to hop over on the link above and take a look.

I am today a very proud blogger!

Thursday, 6 October 2011

A beautiful evening by a beautiful seaside (Thankful / Thoughtful Thursday)

A week has passed by and with it a change in the weather, so I can no longer be thankful to the 'oh so amazing' warm sun and breeze that grazed my skin (still thankful for the spell that we did enjoy) this time last week, not that I am complaining now, we are officially in 'Autumn' weather, crisp but (thankfully) dry which is very pleasant in it's own right.

But I am thankful that I made the most of it when it was here however, no more so than the beautiful evening I decided to make a late afternoon visit to the park.  Now we live in a seaside town.  Some people would dislike this, turn their nose up at it, call it tacky, whatever.  But I love it and so do my family as we have all seem to have mostly migrated here.

I used to live in an industrial town.  And although of course there are a lot worse places in the country that I could have been born it was not the most pleasant of places to live.  It was fine, certainly, but there wasn't an abundance to do as a child, not like the wealth of activities available to my children now living here.  There was no where pretty to walk, not really anything to make the effort to go and see and until the arrival of the leisure centre when I was about 10, nothing to do unless you could get to the next town.  On the way home from holidays (usually taken in the seaside town in which I now live) it was all downhill and with each hill taken my heart used sink, the holiday was over, now the view was of the power station and listening to the go-karts whining around a nearby bit of scrap land every Sunday.

That was my view as a child anyway.  And now although sometimes I miss the whining of the go-karts on a Sunday because when I do hear anything similar I am filled with nostalgia of desperately waiting for Sunday Lunch whilst the smell of burnt rubber also filled the air, I do not miss living there for all the reasons mentioned already.  But the fact that I did live somewhere like that does make me appreciate where I live now. 

I mostly appreciate it when I go out walking, instead of walking along a busy main road, with grey smoke being pumped into the air I can now walk along a lovely seafront.  Don't get me wrong, it is not the prettiest bit of coastline the UK boasts, not by any means, it doesn't have the most wonderful sandy beaches like Cornwall (although the next little town about 20 minutes would give it a run for it's money), the best pier ever or a great town centre (generally that part is quite grim being brutally honest, mostly avoided where possible). 

But it is beautiful to me because along with the allure of the sea (always being an elusive mystery to me; how does it just - stop?  How does it control all of that power it holds?  Why does it give so much pleasure to so many people, yet take the lives of others whether it is given or stolen?) but philosophical stuff aside, it is where I spent the happiest parts of my childhood and I am reminded of that every time I walk out, whatever the time of year.  It's great after Christmas dinner to wrap up and go and take in a bit of striking sea air, and it certainly brushes away those sleepy post-dinner nap requirements!

But I was reminded of it so strongly the other day after that late afternoon visit to the park I noted at the start of this post, that it is still making me smile now just remembering it, and I suspect it will for a long time.  Just the fact that it was still shorts and vest weather in October was enough to make the nation smile, but strolling back from a trip to the park filled with the sound of my babies laughter (the park is still a fascinating new and exciting freedom to him), I was reminded it was in fact October, by how quickly the light of the day dropped away and I found myself walking home in the dark. 

I decided to walk the seafront as it is the safest route home, and I am so glad I did, the sea front was still a buzz with people chilling on the grass verges on picnic blankets, and couples strolling leisurely with their dogs, normally a task done briskly in thick cardi and quite possibly a scarf in usual October climates.  The street lights were coming on, the red marker lights were shining bolding on the Wind Turbines out at sea and the Pier was twinkling with all the rides outlined in little bulbs, making it look like a wonderland (always did to me as a child) with the Helter Skelter standing tall and proud, the centrepiece, it really was a beautiful sight to be seen.  It was heart-warming to see lots of people enjoying the seaside in a month when it has usually become redundant to the tourists.  And I was thankful to think with a rye smile 'Yep, this is where we live'.

I just hope that my children can appreciate it as much as I do.  If they don't I am taking them back to where I used to live for a dose of reality about how lucky they are, so watch out boys!

Tuesday, 4 October 2011

The Disability Diaries (The Life of J1) : The Birth and The Beginning of Our Journey

For those of you that have already read the Page on my Blog called 'My Birth Story - J1' most of this you will already know, but I feel it is important both for myself as the author and anyone who happens to follow this feature to start right from the very beginning.

I found out I was pregnant, whilst I was a mature student studying a Law course at University and as far as I knew from all the check up's and appointments was having a healthy and text book pregnancy.  I had a large and supportive network of family and friends and was looking forward to being a fabulous single mother!

12 week scan

20 week scan, all perfect

Christmas Day 2003 was my predicted due date and I was intending to work as far up to that point as possible.  So it was a shock when on 2nd November, as I finished watching a movie at my parents house my waters broke.  Of course I wasn't really aware of that at the time, I thought I had suffered my first 'bladder accident' due to the baby getting bigger, but when a visit to the bathroom resulted in a continuing dripping sensation a phone call to the local hospital resulted in a trip to the bigger hospital 30 minutes away.

I had no idea when I left my parents that night that I would not be returning home for 3 weeks, and when I did I would have a brand new premature baby to care for.  I was completely ignorant to the risk that was facing me, I had not considered I would need to know about premature births and babies and what SCBU stood for.

On arrival at the hospital I was given steroid injections and told that the hospital did not have space in the Special Care Baby Unit and the Maternity Ward, which in a case like mine, 8 weeks premature, they must have - 'just in case'.  They told me that they were calling around to see who could take us, but it could take some time. 

We were eventually moved to a hospital about an hour away, which was all very exciting at the time.  I think because I hadn't started to have contractions I didn't even realise that I was 'in labour', I was still thinking 'Oh dear, little leak'.  I was told I would be given another set of steroid injections and a scan in the morning while my mum was sent to collect an 'overnight' bag for me.  At the time I was more concerned that I would need to get instructions to the girl who was going to have to cover my job for a couple of days.

For three days I was monitored, I had the scan which showed that there was still water around the baby, plus I had stopped leaking so there was hope that the water may replenish itself.  The last visit from the 'morning rounds' doctor instilled me with hope, when she said that if the waters held I would be allowed home the next morning.

The waters did not hold however, in fact that same afternoon I felt them 'pop'.  I was put on the 'belly monitor' and my brother came for an evening visit.  Just as he was leaving the mid-wife stopped by to check the babies heart-rate trace and quietly said to my mum that she should perhaps stay a little longer and that she was going to have the Registrar pop to see us.

What this meant was that the trace was showing that the babies heart rate had started dipping on a regular basis and I was transferred to the Early Delivery Ward.  Still completely unaware that in a matter of hours I would be delivering my baby 8 weeks early, I actually asked the nurse if I need to take my stuff or if I would be back.  I should have sensed the pity in her eyes when she said 'No dear you need to take everything with you.'

On arrival at the ward I was again hooked up to the 'belly monitor' which was monitored directly out at the nurses station by the Registrar.  Several times I was updated with the news that there had been no improvement until the inevitable visit; 'for the safety of the baby we are going to have to deliver now'.  I was told that the nurse would be in to 'prep' me and it was at this point I realised that this was B.I.G and S.E.R.I.O.U.S.  I had the feeling like I was tumbling through the sky in a plummeting aircraft.  I had to just hope.

As I was prepped for surgery I realised that as fantastic as my mum is she isn't the best at covering her nervousness in stressful situations but that made me calmer.  Until they came to wheel me down to theatre and half way out of the door someone shouted along the corridor 'No, No, take her back a bigger emergency has come in'.  I was taken back into the small holding room, quivering and fearful with the words 'Spinal Block', 'Major abdominal surgery', 'Risk to the baby' echoing around my mind.

After what seemed like an eternity I was finally taken down for my emergency Cesarean and at 3.02am on Thursday 6 November 2003 I became a mum to a 4lb 9oz baby boy.  I wish I could say a 'healthy, bouncing baby boy' but he wasn't.  All I saw in amongst the throng of bodies that were surrounding my little scrap was a grey, floppy doll like baby being vigorous rubbed and maneuvered before he was wrapped up and I was told he had to go straight to Intensive Care.  The only piece of hope that I was left with as I shook uncontrollably on the operating table was the faintest little warble of a cry as the door to theatre softly closed.

A flurry of activity then occurred as I was 'put back together' and taken to recovery.  There was concern that my heart rate and temperature were running high so it seemed I was a long time before I was taken to the Post-Natal Ward, where I was told that my baby boy was 'doing well' although was on CPAP (Oxygen).

In that bed that would be home for the next fortnight, I tried to come to terms with the fact that I had just delivered a baby and become a mother.  The thing that was bothering me most was that I had to pick a name, it seemed like an enormous task and one that I couldn't undertaken until I had seen him.  So with the drip still in my arm and catheter in I was taken along 'but not for long'.  I was warned that the CPAP mask was large and cumbersome on a baby so small and to not be shocked by it.  However, as it was 13 hours since he had been born when I arrived, he was off of the CPAP and was a perfect little looking baby, albeit with tubes and monitors, no fat and what seemed like huge feet!  I also discovered on closer inspection that he didn't have nails or eyebrows!  But he was the most beautiful thing in the world to me.

14 hours old at 32 wks gestation

I decided on a name and had visitors as I would have done had I delivered him normally, but it was hard being on a ward where all the other mum's had their babies in a cot next to their bed.  I felt torn, having had a c-section I was exhausted and in pain and was told to rest, but I just wanted to be by the incubator with my baby inside.

Everything was huge on him, inc nappies!

We had a relatively smooth run in Intensive Care and quickly moved 'up the ranks' into High Dependency and then Special Care where he was moved to a normal open cot.  No one spoke of any potential problems.  I had been told not to expect him to come out of Special Care until his due date and had mentally prepared myself for that and the travelling back and forth daily (we had been moved by this point back to our local hospital because a bed in SCBU was available for him), but he progressed quickly and started to bottle feed well.  I was encouraged to give 'Kangeroo Care' which was the highlight of my day. 

Kangeroo Care 'skin to skin' contact and a permanent look of shock

After about two and a half weeks I was told that as he was stable and feeding well I could spend a couple of days at the hospital in a private room and care for him on my own as I would at home, but with the hospital nursing staff on hand in case he wasn't ready.  After successful completion of those few days we got the wonderful news that we would be allowed home, just three weeks after being born, five weeks earlier than they had predicted. 

Tiny but going home

I set about life with a newborn as all new, first time mothers do, with trepidation.  Everyone commented, obviously, on how tiny he was but I didn't have another baby to compare him to so it all seemed very normal to me.  It was like having a newborn for an extra long time.  At the early checks the health professionals kept on repeating that I shouldn't expect him to reach milestones when I would 'normally' expect and to not expect to much too soon.  But I didn't know what to expect at all, having very limited contact with any babies so alarm bells did not start ringing with me until, probably later than they should.

It was only the fact that a very close friend of mine had delivered a full term little boy in September 2003, that at 6 months old I started to notice that my baby wasn't even holding his head up, where as her little boy was sitting up well.  I wasn't expecting my baby to be able to sit, I was doing as I had been advised to and following the guidelines of what a 4 month old baby 'should' be doing.  And holding his head was one of them. But anytime I raised this, as much as I didn't really want to, I was told I was expecting to much of him.  I think that everyone was a little thrown by the fact that he was feeding so well.

I also had concerns that he didn't seem to focus very well, but as part of the aftercare of a premature baby, especially one that had received oxygen after birth an eye test was par for the course, and it did transpire that he would need teeny, tiny baby glasses.  This I didn't think too much of and he looked damned cute.

However, at 11 months I finally had to take a stand and requested a special visit from a new health visitor because he still was not holding his head up, he was completely floppy in his torso, he kept his hands clenched in fists up by his chin and had developed a really high pitch scream.  The visit from the health visitor coincided with a programme I happened to watch focusing on babies with Cerebral Palsy.  Cerebral Palsy, I didn't even know what that was.  I was soon to find out I would learn a lot about it.  As I laid on the sofa watching the programme I suddenly started thinking 'My baby does that, hmmm, my baby does that too' and when the mention of a high pitch scream was discussed I stared at the television and just knew.

I cried that night, for hours.  The first of many nights, days, hours of tears.  Such an enormous thing doesn't just sink in.  And of course I hadn't had a formal diagnosis so there was still that 1% of hope I tried to tell myself.  But I knew really. 

As it turned out I never got a 'formal diagnosis' day as such, but that is what I will focus on in next weeks feature. 

Monday, 3 October 2011

For The Love of Shoes (Monday Madness)

One thing my husband and I often do not agree wholly on is what is an appropriate amount of money to spend on clothes and shoes.  Hubby is a lot more... liberal shall we say, with funds than I am! 

I admit when I was a working women I was not as conscious as I am now of spending and have been known to partake in purchasing a few too many pairs of Karen Millen shoes and bags in my time, but now I am much more frugal in the material world of shopping. 

Don't get me wrong, my kids always have an array of 'posh' clobber for when the occasion calls for it, but for days rolling around indoors, I am happy to buy and dress them in supermarket clothing ranges, which I think everyone must admit have come on leaps and bounds in the past few years.

However, every now and again I see something extravagant and know that if I mention it to my hubby he will encourage me, usually joining me to go and buy it (as it will be purchased without me cribbing about what else the money could be spent on).  Such an event occurred today. 

Whilst enjoying the late summer days and the fact that he is still home after his foot operation we took the opportunity to spend a couple of hours in town, running some errands and having some lunch with J2 whilst J1 was at school (we mustn't mention we did this however or J1 will be most miffed).  While we were doing this we stumbled across a shop, that although I walk past every day I can't say I have taken much notice of.  But something had caught my eye.  Something so cute, and so trendy I couldn't just walk past.

Little tiny, baby All Star Converse trainers!

Now I was a bit of a fan of the Converse trainer the first time around so was thrilled to see that they have made such a massive comeback of late, but to see them available in J2 size was too much excitement!  I tried to not picture him dotting around in them but couldn't.  We ventured into the shop.  The lady must have sniffed my exhilaration (probably a give away was me saying 'OMG LOOOOOOKKKKKKKK' at all the styles and colours lined up on the walls) as soon as we walked in because she was over, helpfully plucking them off the walls and checking her stock for sizes.

Now, although it pains me that they cost more than I would pay for my own shoes (the price of childrens shoes is complete madness), how cute they are and how much J2 seems to love them (he does have a good dose of me in his genes obviously as he is a bit of a shoe fan) softens the blow and I can honestly say that it is a very rare occasion that I indulge, but look how cute they are!

Saturday, 1 October 2011

Remember Remember...

My Dear Friend, Mrs B-R,

Sometime ago you asked me to remind you of something.  You said, 'Make me remember, make me remember!'

So, here goes.

Remember remember, no not the fifth of November (although I will because I was waiting to go down to theatre to deliver J1 and could hear but not see all the fireworks going off...) but .... the blood, sweat and tears of... looking after a toddler!

Yes, Dear Mrs B-R, you are broody, just as your own little cherubs have hit that (well the youngest) glorious age of 3, when it all seems to get just that little bit easier.  Yes, you have once again come to that 3 year itch and are thinking about scratching it.  So when my visit with my own little red-headed fire-starter still didn't put you off (he was being VERY good, not a normal occurrence to be honest) you said, you must remind me how hard it is.

So, for your benefit, or for anyone who has the '3 year itch' that occurs with the cycle of children (I think it tends to be 3 years or 5 years, when they have gone to nursery or school) here is my brutal version of the reality of toddler-hood (yes the female mind has a habit of blocking all of this out when one gets broody, like the pain of the birth) :

1. Unless you are lucky, prepare yourself for at least three years of NO sleep.  Or worse than NO sleep, broken sleep.  Waiting for bottles to warm at 3am seem to take forever, or getting them to latch on in the wee hours can make you want to scream because all you want to do is snug your head into that lovely warm squishy pillow.  Or if Iike me you tolerated that part well because, you were prepared for it, the tolerance lessens when two years later you are still getting up to top up cups and change soaking nappies, beds etc.

2. Also remember when going to the bathroom was accompanied by a little person trying to climb into the toilet? Whilst pulling out the toilet brush and flicking the water everywhere, running away with the toilet roll (NO my holder does NOT attach to the wall), pulling out all of the toiletries, even when you think you have found a cupboard they can not get into, which results in everything being put up loose on any available high surface thus creating :

3. Bombsite, your house, all the time.  Remember when J2 came round and systematically destroyed every room?  The pot pourri came off the side all over the floor, the remote controls became a battle ground (and I am pretty sure he did something drastic to the SKY), mango was transferred from bowl to the lovely rug... the wooden box got sat on and broken (oh no, sorry that was my husband not child...)

4. Carseats, Prams / Buggies, Highchairs, Plastic bowls and cutlery, sippy cups (non spill, yeah right they find a way) have to be taken even on half hour visits to see people or just generally when you go anywhere, and then you normally end up spending more time getting ready to go out than at the actual location because of :

5. Toddler tantrums - although these do still attack at the 3 year old stage, they generally have calmed down a little and don't happen everytime you attempt to go out in public (supermarket, coffee shop, in fact anywhere enclosed where you can practically be marched out by the venomous stares of all other patrons, daggers, stabbing pain in back, whilst dropping all equipment mentioned in point number 4...stuttering 'Ohhh does someone need a little sleep?')

6. Personal Hygiene, do not expect to have any for at least 2 years, you are lucky to get a 30 second shower let alone apply deodorant, perfume, body lotion, shave your legs (well shave anything actually), wash your hair or apply make up (or pick out anything that matches clothes wise) which moves us nicely onto ...

7. All clothes will look like screwed up dish rags, for the whole family, because you no longer have the opportunity to iron, too dangerous with toddler attached to your leg (probably screaming because you dare to have taken attention off of them for one solitary second)

8. Remember all those lovely soggy, unidentifiable objects you were forced to eat because your toddler lovingly brought them to you to feed you?  Yep, you'll have to do that all - over - again

9. Oven food or cereal it's all you will have time for, I'm sure you'll go back to loving it.  Some of it's lovely, honest...

10. What you are wearing now will be what you are wearing for many years because you will not get over the feeling that the baby needs something more than you because they grow so quickly (although luckily for me my hubby usually over- rules this and buys it for me... never a complaint from me because then it's a gift and it would be rude to not accept a gift!)

So, Dear Mrs B-R, I hope that this little reminder has served it's purpose and remember you ASKED, no practically BEGGED me to do it.  Also it'll make my hubby and anyone with a current toddler laugh, unless they have one of the (whispers) 'angel types'.  You and I don't get those types (J2 and Little A, made of the same cloth!), whoever dished out characters in children must have looked at us and said 'they are strong enough for a challenge'.

Now, for this information to really take effect you must not do the following things :

1. Think back to how a new baby smells and the fact that they sleep for about 16 hours a day until they are 3 months

2. Picture what all the little baby grows, newborn vests and booties looked like hanging out on the line

3. How a baby moving in your tummy feels and how nice it is getting lots of extra attention for 9 months

4. How in the evening when you are giving your kids a cuddle goodnight they snuggle in and look at you and their eyes say 'I am Safe'

5. And definitely do not go and look at your children sleeping soundly and beautifully in their beds... I said don't do it... you went and did it didn't you, then I can't help you, that'll win every time...

I think I may have stamped on the point of this blog post with the last 5 items?  Oh well, you go through it all again and then you will be able to provide me with blog fodder, when my little man has turned into grown up (3+) child.  Why don't I have another?  Oh no no, I am still in the midst of 1-10 thank you very much, no more for me!

And just one more thing, for anyone who thinks I may have been complaining about life with a toddler please read 'Just for the Record'

Best Wishes

Lynsey, The Mother Duck