Eleven

As I took down the last of the Halloween decor, indulged in purely for the delight of J2 and his friends, I mentally ticked that event off of the 'to-do' list.  Next my mind moved to the next big event for our house - hold.  A birthday.  The day it falls is, 6 November, but for me, it starts on the evening of 2 November 2003.

 

Eleven years ago, strangely enough on a Sunday night as it fell this year, my waters unexpectedly broke.  One minute I was watching Dogma and the next I was on the phone to the hospital asking what I should do in the event my water leakage should occur eight weeks early.

 

The response was to not go to them, but to go to the bigger hospital in the next town.  As it turns out they couldn't deal with me either and we got whisked off to a hospital over an hour away.  After monitoring, steroid injections and vast amounts of prodding and poking, I was admitted.

 

My first baby.  Ignorance was bliss.  I learned that quickly; the first steroid injection in the thigh you let them do, the second one you are more reluctant about.  When they go to give you a third you run screaming telling them you really have had the second one already!  Maybe I should have had more sense and kept a record of everything from that point.  But there are a lot of 'What If's' I could spend a whole lifetime debating so I have learned to just accept; I didn't.

 

Any reader of this blog will know the resulting consequences of my birth story.  My eldest son has quadripelgic Cerebral Palsy.  The brain damage he suffered, according the the MRI, happened in the last hour of the birth.  Apparently it is no ones fault.

 

Bad Luck.

 

That is the professional opinion.

 

So, for eleven years we have watched my boy live with this condition.  We have learned to support him and care for him to the very best of our ability.  We have watched him suffer as he recovered from operations needed as a consequence of not being able to walk.  We have watched him grow frustrated as he discovers he can not do a lot of things that his siblings can.  We have, I particularly, felt inadequate as a parent as I fail to get councils / governing bodies / professionals to listen.

 

It is easy to feel overwhelming negative. 

 

Until I have a conversation with him.  Yes, have a conversation with him.  I can hold a conversation with my little boy.  That was something I didn't know I would ever be able to do.  He didn't speak until he was five.  Now he talks, and shouts and sings, beautifully out of tune (a trait he most certainly gets from his mother!)

 

He tells me it is his birthday on Thursday.  He is going to be eleven.  He would like an Ipad.  He thinks he is going to get one.  He has got a flake cake to take into class.  He then tells me the name of his class; who his teacher is and who his best friend at school is.

 

I marvel. 

 

He is a miracle.  Saved in an age of technology.  Afflicted by bad luck but sticking his two fingers up to it's consequences. 

 

He has a lot of issues to contend with, in truth we all do.  Disability makes life extra hard work for everyone involved but he does it with a smile - well for the most part - we are gradually seeing more 'teenager' starting to creep in (but how great is that!).

 

So another year has crept by, I write this blog as I write one every year celebrating his growth and tenacity.  Celebrating the fact he is here, with us, to smile, laugh and give us attitude.  I thank my body for holding him in until just eight weeks before he was due to be born.  I thank the nurse who stuck a steroid injection in my thigh and backside.  I thank my son for being a stubborn and determined little man every single day.

 

Eleven whole years of being the luckiest mum ever.

 

Birthday Time.

Featured Story on Mummy Pink Wellies : World Prematurity Day

K over at Mummy Pink Wellies is championing (brilliantly by the way) #WorldPrematurityDay over on her blog.  She is featuring as many stories on families that have experience with Premature Birth as possible in order to try and raise awareness of the 17 million babies born prematurely around the world.

Today she has featured myself and J1's premature birth journey.  Please follow the link HERE and check it out, along with the other posts featured recently.

If you want to know more about #WorldPrematurityDay both Mummy Pink Wellies and Not Even a Bag of Sugar blogs are a mine of information and links to organisations that can help.

Special Awareness : I am grateful for...

Special Saturday is now hosted as and when you wish to link up to it now, rather than prompts coming on a Saturday.  Despite this, it's aim remains the same.  To raise awareness of the daily highs and lows of living with a special needs condition within your life.  Whether you are the person with special needs; the parent or carer of someone with special needs; the friend of someone with special needs or just had your life touched (and usually improved) by knowing someone with special needs.

The last prompt given by the administrators was :

I am grateful for ...

 

 

I was very excited to see this prompt because I like being able to sit and think about the good points on life.  It is very easy to see the negatives in things, especially when you have incidents occur like we did this week.  It is easy to let frustration drain you.  To make you question your faith in fairness.

I participate in a weekly blog hop called 'Reasons to be Cheerful' whereby you have the opportunity to share the things that have made you happy in the course of the week.  It is surprising what you can find - even in the crappiest of weeks.

So this is a good opportunity to do the same but on the subject of Special Needs.  Someone with no experience of having Special Needs in their life would probably wonder what on earth could make you happy about it.  So here is what I am grateful for...

* I am grateful, that my son, J1, who was born eight weeks before he should have been is here with us today.  I am grateful that we live in a day and age where science and technology was able to keep him alive in those first tentative days.  We didn't know in the first few weeks or even months that brain damage had occurred.  Everyday I wish it hadn't.  Especially knowing that it occurred in the last hour of the birth.  It's a tough pill to swallow.  We will never know what specifically caused it.  It could be one of many potential factors.  Apparently.  But if the choice was between having him with us, exactly as he is today or not at all I wouldn't change a God damn thing.

* I am grateful that we got a quick diagnosis.  Within weeks of him seeing the right consultant we had it confirmed he had the condition Quadriplegic Cerebral Palsy.  This made getting the right help for him; physiotherapy; occupational therapy; speech and language therapy; hydrotherapy easier.  I will not say easy, because nothing comes easy. But at least with an actual diagnosis, you have a hope in hell. 

 

* I am grateful that J1 can speak.  He didn't start to speak until he was five.  The most important part of this ability, apart from the wonder of here him saying 'Mum' for the first time, is that he can tell us if he is in pain and the generally where the pain is.  This is incredibly important, particularly since he has such problems with his hips. 

 

* I am grateful that despite his huge physical disabilities J1 is a very placid nature.  He does not have any behavioural problems.  Although J1 is physically demanding when it comes to caring for him as he must be hoisted whenever he needs moving; he can not sit unaided; he has to have extensive physiotherapy - he is not a challenging child.  He is very accepting of the fact that he must be hoisted; he must be tightly strapped into equipment; he must have the extensive physiotherapy.  Saying this, as I have mentioned in numerous previous posts, as he is getting older he is developing more sense of awareness of the things he can not do and this is beginning to cause a little frustration for him.  However, on the plus side of this the fact that he is developing the awareness in the first place if fantastic.  It is wonderful that he is becoming socially aware, and hope this means that he can start to join in some after school activities and gain some social independence.

 

* I am grateful for all the wonderful people I have met through J1.  I did not know that so many giving, kind, selfless people existed in the world.  I am always very wary of the fact that there are some awful, evil people in the world that pray on the vulnerable but am also now aware that there are many people out there who have the compassion to care for them as well as I can care for him.

 

* I am grateful that when fate decided that my child would have the special needs that he does, I had the character and strength to know that I would cope.  As a single mother some (brave) people asked if I would give him up for adoption.  They are not people I speak to anymore.  Anyone that would think a Mother would give her child up because they were not able-bodied, or had any kind of special need are not the sort of people that I wish to have in my armoury of friends.  I do not look at J1 and think he is my disabled son.  I look at J1 and think, he is my oldest son.    His disability isn't invisible.  It is there for the world to see, but in the world of my love for him, it doesn't exist at all.

 

If you have a post, comment, thought or anything related to Special Needs that you would like to share, link it with the Special Saturday facebook page and twitter @Specialsat #specialsaturday.

 

I am also linking this post to the Love That Max Special Needs blog hop.



The Disability Diaries (The Life of J1) : Dark Days - Getting Lighter!

Part three in a series of 'Dark Days' posts in the 'Disability Diaries' Feature.

For part one click here.  For part two click here.

At the end of the last instalment of Dark Days, I had got to a point where I was starting to cope with day to day life.  I still had bad days, plenty of them.  But with the help of the anti-depressants, getting back to work and a change to a more healthier lifestyle I found I was beginning to accept and acknowledge that life for J1 and I was going to be very different from what I had thought it would be.

During my move to a 'healthier lifestyle' I had set my sights on undertaking a Charity 'Challenge'.  I was investigating the possibility of signing up to trek the Inca Trail in Peru, with the aim of raising about £1800.  A good friend also wanted to do it and the first step, before parting with registration money, would be starting to get fit.

Due to financial constraints I decided to get fit I had to start running.  This was the source of many wry smiles from friends and family, for the main reason that I had always been rather vocal about being anti-running.  I did what I always do when starting something new; purchased some reading literature on it. I bought my first of many Running Magazines and I enjoyed reading it.  I gave me a lot of inspiration.

The most useful article I read was Top Things To Remember with Running.  The key point that stuck with me, and still does when I run today : The first ten minutes are the hardest.  I really clung onto this little pointer on those first few tentative runs.  I stuck to a 'complete beginners' guide, which encouraged building up slowly.  I would run for two minutes and walk for one.  Soon I found I was comfortable enough to run for four minutes and then six and then eight etc.

It was after a Saturday morning jog that I came home to find my mail on the door mat.  On a high from the exercise, I opened a large envelope from the charity I was hoping to do the trek for.  It was a large advertisement for one of their other 'challenges' and it made me smile immediately : The London Marathon 2006.  I knew instantly this was the 'challenge' for me.  I completed the registration form, found my chequebook and walked the application to the post box.

I didn't tell anyone but the friend that had shown an interest in doing the Peru trip.  He was happy that I had found something that had inspired me, and insisted that he still wanted to register for the Inca Trail.  I found some literature on Marathon training programmes and started to train against that.  I would not hear for sure if I had been allocated a place for the Marathon with the Charity until at least October so in the mean time I continued to build on my running and started to brainstorm fundraising ideas so that I was prepared.

I got the good news that I was going to be a London Marathon participant and euphoric told everyone.  I think my parents were happier that I would be staying in the UK than disappearing to Peru.  I had found my mum slowly starting to drop tid-bits of information in like 'Rather large spiders in Peru'.  Although I wouldn't be going abroad I still had to rely heavily on my parents for support for all the training hours I was going to need to put in and for the fundraising target I needed to hit. 

As with everything new all training and motivation started with gusto, but as the dark, cold nights started to draw in, going out for runs became less appealing.  I was also going out more socially, as I was feeling much stronger.  Although this was good in one way, it meant that I was drinking more, which was not conducive to focused Marathon training.  Long runs were missed due to hangovers. Evening runs were abandoned in favour of spending the extra time getting ready to go out.  Or I felt I couldn't ask my parents to have J1 as they had already looked after him so I could go out. 

Then two things happened that made me realise the importance and scale of what I was doing.  I had registered for my first run in the January.  It was a 10 mile race.  I wanted to get used to the etiquette of racing and thought it would be a good starting distance.  The race came around much quicker than I expected and suddenly I was faced with the fear that I was going to be participating in a race that I was just not ready for.  That filled me with dread.  What if I just couldn't finish and then was lost?  What if I came last?  Not only last, but so long behind everyone else that the organisers had packed up and gone home? 

At the same time the University where I was working ran a feature on a both myself and another member of staff running the Marathon in the monthly magazine.  It was a lovely piece and displayed a beautiful photograph of J1.  When this was published I noticed the donations on my 'Just Giving' page went up dramatically and small and large sums of money were being pledged by University staff, most of them I had never met, all with kind and supportive messages.  It came screaming home that what I had signed up to do was real.  It wasn't something I could just decide not to do.  I had committed to it and I needed to pull my finger out and get serious. 

Along with the Just Giving page I also did a few different fundraisers; the main one being 'Party in the Pub' - a childrens party for adults.  This entailed a 'crisp and sweet only' buffet (big hit); giant games (also a big hit) and bouncy castle (biggest hit!).  We held a raffle and did various other 'pay and play' games and this raised a huge chunk of my target.  The support was overwhelming, everyone believed that I could do this and it was time I started to think that way as well.

I am glad to say that I did complete the 10 mile race.  I also found that I loved the whole atmosphere of the event.  Other runners were so friendly, and immediately interested in J1's story and the reason I was undertaking the Marathon.  And it was the first time I really felt like 'A Runner' - and that was a label I liked.

After that I made a lot of effort to enter races, in a variety of distances as these were great motivation for me to get out training.  Looking back now with the benefit of hindsight, I was out training and getting races under my belt but I only within my comfort zone.  I only entered one half marathon and this really wasn't adequate.  My longest run was about 16 miles, not really long enough or frequently enough and in the end I just ran out of time. 

Whilst life almost became all about the Marathon for six months we were also making a lot of progress with J1 too.  We now had the official diagnosis and this made getting the help he needed easier.  I still do not know how those parents that care for children who remain undiagnosed cope. Along with appointments about equipment (always was and I fear always will be the toughest nut to crack), physiotherapy and speech and language therapy we also got access to a weekly hydro-pool session.  This session meant we met other parents of children with disabilities and special needs - a huge support. 

Soon April had arrived.  I was feeling mentally and physically much better than I had for a year.  I was proud that I had reached race weekend without injury and was looking forward to taking J1 to London for the first time.  I was elated that I had not only reached but exceeded my fundraising target.  I was ready to face my physical challenge of a lifetime, but never forgetting the lifetime of challenge that J1 was facing.

The Disability Diaries (The Life of J1) : Dark Days - The Discovery

The first post in a series of 'Dark Days' for the 'Disability Diaries' Feature

J1 was discharged from hospital and the Special Care Unit, at just over three weeks old.  This was such a relief, it was all positive steps in the right direction.  I had been lucky in one respect, because we had been sent out to a hospital quite a distance from our home, I was allowed to stay on the post-natal ward for two weeks so I could be with J1 within minutes.  Once we were transferred back to our local hospital, I had to commute daily which was very stressful. 

All the time I was not sitting by the incubator, which was only when I was sleeping, showering, eating or travelling, I was like a cat on hot coals, pining to be there.  I was still in a great deal of discomfort from my cesarean and although people kept telling me that I also needed to rest, I would be up at 6.00am so that I could get to the hospital to see my little miracle.  The 20 minute journey to the hospital which pre-J1 seemed like a short commute, seemed to take a life time.  Every bit of traffic seemed like an obstacle personally placed to stop me getting to my newborn.  Leaving at night was complete torture. 

However, when we were finally released the whole family breathed a sigh of relief.  We could now start our life as a 'normal' mother and baby.  A few days after he was home we had the standard midwife check up.  J1 was doing well, I however had broken out in a rather painful rash around my midriff.  After taking one look at it she declared "Oh dear, it's Shingles."

The Midwife suggested that it was probably a physical reaction to the shock of what had gone on over the last month.  I was quite surprised by this idea, as far as I was concerned I had just taken everything in my stride, and why had it happened now, when we were home and the pressure was off?  She said it was a common occurrence, that your brain can only take so much stress before it bubbles over and a physical reaction is required to 'release' it so to speak.

I probably should have been more aware of this when 'The Diagnosis' came.  I was doing exactly the same thing, thinking I was just taking everything in my stride.  The shocking fact that I had a son with a condition called Cerebral Palsy, all the extra hospital visits and appointments that came with this news, the usual stress of being a first time, single mother with a young baby and trying to work to provide a home and nice life. 

I ignored the initial signs that I was not dealing with everything that was being thrown into my path of life.  The signs such as, only going out to work, not taking friends calls or offers of a social hour out.  The days that I would wake up from my sleep sobbing, and then shed big, hot, ploppy tears for the next 12 hours of the day.  I stopped caring about my appearance, something I had always made a big effort with, particularly when it came to work.  I would go into my office each day, but my head wouldn't be there, I would just want to be at home, curled up with my baby on my sofa sleeping.

I also picked up every bug and virus on the radar.  I tried to keep going, until I developed tonsillitis so badly it gave me a temperature of over 100.  This knocked me off of my feet for days, and combined with feeling low to start with I slipped into a deep and dark pit.  My parents had to take J1 as we did not want him to contract it.  I laid on my sofa for three days, hardly moving, without the tv or radio on, not eating and wondered if I would ever get up. 

I laid and wondered if I had the strength to get up and keep going.  I questioned if I was capable of looking after this precious and special little boy.  If I could cope with what the world was going to place on our lap.  Buried deep in fear of the unknown and feeling far from well those are the worst three days I have ever lived through. 

Once the tonsillitis wore off and I had to return to work, I went as the shell of the person that I had been.  I remember walking in on the first day back, kind of dazed and straight to my bosses office.  They took one look at me and said "Your clothes don't match?  What's going on?".  When we discovered I couldn't really string a sentence together without tears, she immediately gave me some time off with the strict instructions to go and talk to my doctor.  She had been wanting to do this for a while but didn't want to upset me further by approaching me about it.

It was difficult in the doctors.  I tried to go in to say I was run down, but he could see it was more than that.  Much sobbing of 'I can't cope' (just saying those words was enlightening) he prescribed some anti-depressants, along with a healthy diet and some exercise.  As my Mother had come along with me, he was satisfied that J1 was being safely cared by me and my family.

Leaving the Doctors I was in two minds about the anti-depressants.  I really did not want to have to take them, there was such a stigma attached, would they cause unwanted side effects?  Did I really want to be taking them at 26 years old?  Would it not lead to a longer slippery slope?  My Mother made a two good points, I could research the ones I had been prescribed, until I was happy.  If I then made the decision that I was going to take them no one else even needed to know, I could just outwardly make the diet and exercise change.

Just by taking the steps to start to try and help myself, I immediately felt better.  I had regained a small amount of control.  I had been signed off of work so I had a couple of weeks to slowly start to make some lifestyle changes, and the important thing was that I wanted to.  I did research the anti-depressants and felt satisfied after further discussion with the doctor, that I would probably only need them for the short term.  The Doctor noted that I wasn't a seemingly 'depressed' person in general.  I had 'reactive depression' which given the circumstances, was not unsurprising.

Things did not change overnight, of course they didn't.  But never since have I had three days as dark as those I experienced at the beginning.  I started taking my tablets, I made more effort with my diet and I started to think about what forms of exercise I should undertake.  It was good to have something like diet and exercise to focus on.

My journey to recovery, acceptance and getting our happy life back had begun.

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.