Saturday, 31 March 2012

What Has Made Me Cheerful This Week

As I thoroughly enjoyed joining in with thinking about 'What Has Made Me Cheerful This Week' last week, I thought I would do it again, as it was lovely to read back over it and remind myself just how lucky I am in this big old world.

So this week here are my top 10 picks for why the week has been pretty darn good :

1. Celebrating our One Year Wedding Anniversary with The Hubby.  We tried out a restaurant we have been wanting to go to for ages and had a lovely evening with lots of laughter.

2. Finally getting to the Under 5 swimming session with J2 - after a good 12 weeks of attempting it, we were finally fit enough to go - hoorah!

3. J1's school photograph came through and after the disappointment of last year, this one brought out a smile on all of our faces and has been promptly ordered.

4. The Hubby managed to track down some more 'hard to come by' Barbies and despite me telling him off about spending the money on them, they are pretty awesome.

5. I have been part of the Charity 'Young Epilepsy' campaign 'My Purple Pledge' and been trying to help them raise the profile of Epilepsy and the amount of people that cope with this condition every day.  This has brought me closer to a dear friend that I have recently got back in touch with too, so a win - win all round.

6. I have made a real effort to touch base with, go see and / or make arrangements to go and see a lot of my friends.  A couple of them seem to be having a bit of a hard time at the moment and I feel inspired by all the wonderful positive blogs I am reading that I feel I can help them.

7. I got to go and spend the day with my friend and her new baby daughter, getting lots of cuddles but not getting broody - this was a real good test for me and I passed with flying colours.

8. My other friend who gave birth to a baby boy last week, but who was kept in for a few days for observation are now both home safe and sound.

9. I have had a record number of hits for the month of March on this blog - which has thrilled me.  It really feels like the extra effort of more frequent blog posts, getting back into writing for 'The Disability Diaries' and the new feature 'Marvellous Mum' has paid off.  I am getting some great heart-warming comments from people too.

10. The absolute best piece of news that this week has held for us however, is that J1's hip x-rays are showing that his hips are as they should be and no imminent surgery is required at the moment(phew).  Although we do have to accept the fact that he will always have discomfort in them when we try to do physiotherapy / move him, I was worried that we would be seeing the inside of the hospital again far to soon, so for that I am thankful.

Other inspiring and 'Cheery' souls can be found over at and as always if you want inspiration check out Kate on Thin Ice.

Friday, 30 March 2012

Monthly Feature : Marvellous Mum

This is the second post in my new monthly feature 'Marvellous Mum' where I highlight a wonderful Mother for the star that she is!  I believe that all Mothers should be marvelled at, whether you are a stay at home mum, work at home mum, work full time mum, part time working mum - if your life works for you then you should shout about it.

This month I am featuring, possibly the most inspirational Mum I have ever come into contact with.  Heather Von St James contacted me a few months ago, as she felt my blog was inspiring and requested if I could put a link to her own blog on it.  Heather briefed me on what she was hoping to achieve and once we started chatting I wanted to help her 100%.

I find Heather and her life honestly and truly one of the most amazing things I have ever learnt about.  If you want to read about a women, wife and mother that has battled cancer (beating the unthinkable odd's of 90-95%) by taking a chance on a hugely unknown and dangerous course of treatment because she believed she deserved to watch her daughter grow, and done it with a smile and a sassy kick, then continue on to Heather's story here

Thursday, 29 March 2012

Disability Diaries : The Day May Be Over But The Month Is Still To Come (Supporting Young Epilepsy)

**Part of a Series of Posts Supporting Young Epilepsy (**

Recently I have been publishing articles in conjunction with the charity Young Epilepsy, to raise awareness that International Epilepsy Awareness day and Young Epilepsy's 'My Purple Pledge' campaign was taking place on Monday 26 March 2012. 

My own 'Purple Pledge' was to write blog posts and publish them for Young Epilepsy. I think it is wonderful that a condition as serious and (sadly) common as Epilepsy (but so often overlooked) had an awareness day and that I could be part of raising its profile.

However, all too often after the Awareness Day everyone moves on and it goes back to those loyal few to try and keep its profile up there in the spotlight.  And that is what I want to try and help to do, that is my continued 'Purple Pledge', because for those individuals and families managing their lives with the condition it doesn't disappear after Awareness Day.

I posted about our own personal experience with J1 and Epilepsy and noted that it is one of the things I fear most for J1, as I know that my parent friends with children with disabilities who also suffer with Epilepsy, find the Epilepsy part of the diagnosis one of the hardest parts to try and cope with. 

We are lucky at the moment as the activity in J1 appears to have ceased, but I am constantly on the look out for any sign of it emerging, and if it did / does I would need the help and support of charities such as Young Epilepsy.

Although the 'Awarenss Day' and the 'My Purple Pledge' campaign has had it's day for this year, I appeal to everyone to continue to support those for whom Epilepsy touches.  Epilepsy Awareness Month takes place throughout May and it aims to do just what it says; Raise Awareness. 

Raising money for these charities is one way of helping and lots of fundraising ideas are available to look at on the website but moreover, if more people just understood the condition and it's implications it would make a world of difference to those individuals and families to whom it is an intricate part of everyday life.

Wednesday, 28 March 2012

No, Urgh, Yuk!

Every parent has days where they find their children hard work.  Children are prone / entitled to off days as much as adults and on those days they are hard work.

Then there is Toddler hood

I didn't really ever experience 'Toddlerhood' with J1.  He had his moments, don't get me wrong but they were few and far between.  But this J2 character, wow, he is certainly making sure that I get the full on bafter of 'The Wrath of Toddlerhood'.

Everything you can every think of in a cliche to do with 'The Terrible Two's' J2 is giving us right now and I am wondering if I am actually going to make it through it.  If I do, I fear at the end of the next year or two I may; run out of voice due to the constant use of it to check / discipline / negotiate with J2; hair due to the amount of time I spend putting my head in my hands and counting to 10; teeth due to the amount of head butts I get whilst J2 has tantrums over anything and everything.

The main frustrations at the moment are the constant battles.  In true Toddler style, he doesn't want to bath / get dressed / brush his teeth.  If we want to go out in the car he says buggy.  If we want to go out with the buggy he says walk.  If we want to walk he says carry.  He doesn't want to go in the car seat, but when we want to get him out the other end, he wants to stay in.  Then when we finally get him out, he doesn't want to go in the house. 

Then when we are in the house starts the Peppa Pig obsession.  He literally wants it on all the time and when it's not on he stands at our legs crying and whining and trying to drag us to the TV to put it on / change whatever is on to put it on.  Even when he has had a good dose of PP and is bored of it (cue more whining regarding what episode is on - the sign it's certainly time to go off) he repeats the words again and again and again ...

Then we have the current 'most grating' thing.  Everytime we sit down to eat 'No, Urgh, Yuk!'  The more amusing side to this is he also says it whenever someone gives him a kiss!  But where oh where has he learnt it? 

Now I am all for children having some determination and go in them, but this current phase, is just plain hard work.  To the point where the only appealing thing for us to do is to stay home, leave him in his PJ's and turn the house into Peppa Pig world.  I think that would be pure heaven in J2's world. 

Alas with this not being possible, I get through the day by praying that this phase will be a short one, working on a stack of distraction methods and live for those wonderful days where I see my other 'Mummy' friends and they say 'Oh my god, we are going through exactly the same thing at the moment, doesn't it drive you nuts!' and those even more wonderful days where I see other Mummy friends who can say 'We went through that phase, they do grow out of it.' 

And on to those words I cling with hope.

Now I have to find another Peppa Pig DVD to put on...

Saturday, 24 March 2012

This Time Last Year - Wedding Memories

Although date wise our Anniversary is 26th of the month, it was this DAY (Saturday) last year that we got married.  The day itself, in fact the whole week leading up to the wedding, was exactly as I had envisioned it.  From the frantic arts and crafts 'team work' on the Monday and Tuesday, writing out name places, printing out the table plan (nightmare and only source of argument all week!), collecting the freshly pressed crisp napkins and tying hot pink organza into pretty bows, getting all the pick 'n' mix into the right jars and fiddling ribbon around them, boxing up all the separate table centre-pieces with the most precise instructions and seating plan the venue planner had (apparently) ever seen (my obsession with lists came into its own...)

By the Wednesday, I was determined the bulk of the labour would be done so that things could start to chill and all the beautifying treatments and collections could begin, highlights Wednesday, collect cake ready for decorating, and dropping all decorations and instructions to the venue on Thursday, lunch with friends / family and final drop off at venue on Friday.  I tried to not give myself anything to stress about and it worked.  I was lucky that I was not working so could dedicate the whole week to the preparation.

I remember getting the most excited on the Friday, when I returned to the venue to drop my wedding dress and veil off so it could hang in the Bridal Suite to find they had already started laying out the wedding breakfast room.  It was amazing to see my vision coming to life.

After the last stop of the day, Nails - and the biggest laugh I think I have possibly ever had - we had a fish, chip and champagne supper (which I would highly recommend to anyone) and set to bed for an early night for an early start.

The alarm sounding at 6am roused me, and I had those first few seconds of the day where you have no memory of what day it is, but it soon hit me and I was a bit like Ross out of 'Friends' on his London wedding to Emily 'I'M GETTING MARRIED TODAY!' but quietly as I was the only one that had to be up so early.  Showering, putting on my, carefully planned and picked out 'getting ready to get married' outfit I headed off to my hair appointment.

Two relaxing hours in the salon, being brought coffee and biscuits and getting lots of 'Good Luck' texts, I left with my 60's inspired do and headed a couple of doors up to get my make up done before the very over excited journey to the venue.

We didn't do a lot of the traditions at our Wedding.  Our Ceremony was at 2pm, but I came down to meet The Hubby and J1 and J2 at about 1.15pm and to have a drink and mingle with our guests.  This took all the nerves away and I was so ready to get married by 2pm that I practically ran up the aisle with Hubby.

A short but beautiful Ceremony, Hubby cried, I cracked jokes but the most memorable bit, J1 coming to the front of the room and completely off the cuff giving the whole room a full rendition of 'I'm Forever Blowing Bubbles' before we signed the register and the photo session began.  We only had a very few posed photos instead opting for our photographer to just snap away all day - a decision I am very pleased with.

The rest of the day was a perfect food, drink, music, chatting and dancing mixture.  I heeded the best piece of advice I was ever given - every now and then just stop, take stock, stand and look around and take everything in, the sights, sounds, smells, otherwise it'll pass in a blur. 

So today (although date wise it is Monday) I remember that wonderful day, and the year since that has passed so fast with nostalgic feelings of 'what a happy day' and a twinge of  'I wish I was doing it all again!'.  I would not change a thing about the day and love the fact that our boys were there and in all the photos, a real family day.

Friday, 23 March 2012

What Has Made Me Cheerful This Week

Another blogger recently started a wonderful weekly post Series called 'What Has Made Me Cheerful This Week' and with so much happening in the last week I thought it was a good as time as any to join in with thinking about this.

So, with a spring in my step today these are the reasons it is there (I hope this inspires you to think about what, even if it is the littlest thing, that has cheered you this week, even if it has been a really bad one) :

1. Spring seems to have finally arrived and we have been able to shed the heavy winter coats and boots and get out in the fresh air to play at the park, feed the seagulls along the seafront and get out in the garden (well - my parents garden).  This is very good for both children, and the beautiful blue sky always help to lift the spirits.

2. I have kept up with my promise of seeing my friends more, I had a lovely day running errands with Mrs B-R yesterday and am off to see two 'brand new mummy' friends next week - cuddles with brand new babies a-hoy!

3. My oldest friend safely delivered a healthy baby boy last night, and although he had to be observed overnight, Mummy and Baby Boy are doing very well this morning.

4. My other oldest friend took a leap of faith and put me forward for an amazing writing opportunity which I have been asked to undertake.  This is absolutely thrilling for me and I am so thankful to her for having that sort of faith in me.

5. J1 has had a very good week, with no resistance to physiotherapy, or doing school work and no major meltdowns - woohoo.

6. I had the most amazing Mothers Day, getting to spend it with my own mum and dad as well as my own little brood.  I realised just how much I am appreciated myself and how much I appreciate my own mum all year round and got to tell her, as well as making her the best Victoria Sponge I have ever mustered.

7. J2 continues to be quite obsessed by Peppa Pig.  This means he is more than happy to sit and watch a couple of episodes and play with his Peppa toys for half an hour, which gives me a bit of time to get the cleaning done - it's taken 2 years but we seem to finally be less clingy.

8. The Hubby managed to find and secure two rather elusive and 'hard to come by' Barbies as a surprise for me.  They are ones I had when I was a child so extra special.

9. Our first Wedding Anniversary is on Monday and The Hubby has booked for us to go out for a lovely meal at a restaurant I have been wanting to try for ages.  We are also going to visit my brother and his family this weekend, so lots of outings to look forward too.

10. I have been able to get involved in Young Epilepsy's 'My Purple Pledge' campaign - will you take a Pledge on Monday 26 March 2012?  To find out more about the amazing work this charity does, and see how you can get involved visit their website.

Other inspiring and 'Cheery' souls can be found over at and I would highly recommend checking out Kate on Thin Ice's post - even though she is having a bad week, she still managed to post on this topic which is truly heartening.

Thursday, 22 March 2012


From when I was a child, I don't remember 'learning' about friendship.  I think it is one of those things that is born in you.  You just know what it is, and you long for it.  As a toddler, your teddies and dollies are your friends.  They come to your tea parties, they do whatever you want them to do.

Then you start playgroup / nursery / school and suddenly there are real people with whom you are friends with.  They come to your tea parties and do not always necessarily do what you want them to do.  You learn the long process of give and take, of bonding and scrapping, declaring a new 'best friend' every day.  Again, I don't really remember making those friendships, they just started from the minute you walked in the room, was told where the coat pegs were and where your seat at your desk was.

I went to a relatively small Primary School, so had a small but very close circle of friends.  Thus, when we started Secondary School, which combined all of the students from all four Primary Schools in the area it was a bit of a shock.  Luckily they placed a few of us together, but as invariably would happen, we got to know other people and drifted off to other friendships and groups, formed new buddies to be 'best friends' with on a daily basis.

When we headed off to college I was in quite an unhappy place.  I had achieved very good GCSE grades at school, and everyone just assumed I wanted to go onto college, for A-Levels and then University, but I felt that was all being mapped out for me, without me being allowed to consider if it was what I actually wanted.

At college I found I was doing very different courses to all my friends, giving me a different timetable and isolating me from a lot of them.  No one else seemed to have this, my classes were packed full of students who had ready made friendships and groups.  Trying to crack into them was impossible,  particularly since I was of a quiet nature.  I felt my friends had all moved on, to enjoying college life and new friendships and now relationships and I hadn't.

After the first year I came to a cross roads, I could continue down a very unhappy road or I could get out into the big wide world of work, become an adult and re-invent myself.  I took that chance but in doing so, apart from one or two, unknowingly said goodbye to a lot of friends.  I didn't realise it at the time of course, I still had a small cluster of mates that I went out socially with, but with time through work and for some University we all moved on to meeting new exciting people, that frankly we now had more in common with.

When an opportunity to move to a new area arose, it was something I had been longing to do for years.  However, I was settled with a serious boyfriend and through him a set of, I would probably say acquaintances rather than friends.  I decided I had to take the plunge, and set about starting a new phase of life, in a much more pleasant area.  But of all the things going on in that period, a new home, a new job, a new schedule of weekends spent travelling back to see 'The Boyfriend', it was the 'making new friends' part that I was most anxious about. 

Everyone always says it is so much harder to make friends when you are older, I think because you consciously have to go out and do it, put yourself 'out there' and find common ground with someone.  I believe as a child, you don't need to do that, you 'create' common ground together if your nature is going to rub along with someone elses.  I was lucky however.  The new job I had managed to secure was within a Students' Union at a University, and being only 19 myself I couldn't have found a bigger pool of people my age, all looking to make new friends.

It was a bit like being back at school again for a while, new 'best friends' were made weekly (usually in a drunken fuzz that bonded everyone together), but being a University everybody left, and although you all claim to stay in touch forever, it is with a precious few that you continue to maintain common ground with to be able to do so.

After 'The Social Years' I found myself a single mum.  As I have mentioned in previous posts, this was quite an isolating time, I shut a lot of people out as I didn't have the energy for trying to maintain friendships.  I found myself needing to be full time mum and bread winner.  As J1 got a bit older, and I started to accept our new life, I went to work in London and this once again gave the opportunity for new friendships to be formed.

Now in my 30's I seem to have found a happy place for friendships.  Through the marvel medium of social networking sites I have been lucky and blessed to be able to be back in touch with those very first friends from nursery school (we have dipped in and out of each other lives at various points, but always lost touch again), and I feel as close to them now as ever.  I think we are now of an age where we realise how much of each other we hold in memories and how important that is.  So 'Thank You' to Adam, Lorraine and Sara for allowing me back into your lives and always still being there with support and love.

And to my 'new' grown up life friends, met through college (the second time around), work (various places) and baby groups.  Thank you for supporting, sharing and listening always, Marina, Aicha, Becca, Lil'Vicky, Big Al, Emma, Emma, Emma (no, your name doesn't have to be Emma to be my friend!).

I have learnt so much in the last few years how important ALL friendships are to have, and that no matter what age you are, you should always make the effort to find new friendships and maintain the existing ones.  

And now I am lucky enough to have the best friendship I could hope for;  I found a wonderful 'forever friendship' in my Husband.  For him, and all my other friendships, I am thankful every single day.

THANK YOU to all of my friends, school, social, new and to be.

Wednesday, 21 March 2012

The Disability Diaries : Supporting Young Epilepsy - My Purple Pledge

**Part of a Series of Posts Supporting Young Epilepsy (**

**Will You Take The Purple Pledge on 26 March 2012?**

The following post comes directly from Young Epilepsy :

Paint the town purple!

Celebrities join forces with Young Epilepsy to launch My Purple Pledge

Young Epilepsy is urging people all over the country to back flagship campaign ‘My Purple Pledge’ this March, and make a difference to the lives of the 112,000 young people in the UK living with epilepsy.

Backed by a series of famous faces including Commonwealth, European and World Champion 400 metre hurdler Dai Greene, Young Epilepsy is asking the public and celebrities alike to do something purple and help put a spotlight on this misunderstood condition. 

Pledges could range from wearing purple to work or school, baking and selling purple cakes, taking part in a Purple Zumba, or even being sponsored to lie in a bath of blackcurrant juice! Anything goes and the quirkier the better! Any pledge – big or small – will help raise vital funds for the charity which is the UK’s only national charity dedicated to children and young people with epilepsy and other associated neurological conditions.

‘My Purple Pledge’ coincides with Purple Day (26 March 2012), the international day to mark epilepsy awareness and National Epilepsy Awareness Week (May 2012).

Young Epilepsy Ambassador, Dai Greene, said: “My Purple Pledge aims to put epilepsy on the map and make people aware of what it really means. I’m fully behind the campaign and will be pledging purple to help improve the lives of a lot of young people with epilepsy. I’m hoping that as many people as possible will be ‘in the purple’ for the 26 March and help raise desperately needed funds for such a deserving cause.

“Epilepsy effects over 112,000 children and young people under the age of 25 – including myself - and is the most common neurological condition in the UK. Despite this, it’s still relatively unknown and has little awareness.”

Lisa Farmer, Director of Fundraising at Young Epilepsy, commented: “My Purple Pledge is a fun way of generating awareness about a very serious condition. All monies raised through the campaign will be used to provide life-changing support through our special school, college, medical centre and residential homes. Ultimately, it will help young people with epilepsy across the country to fulfill their potential.”

Epilepsy is a serious debilitating disorder of the body’s nervous system causing symptoms such as paralysis, muscle weakness and seizures. It affects around one child in every primary school and five in every secondary school. Around 6,000 young people will experience communication, learning or behaviour problems. In some cases they will also have a significantly higher mortality rate.

The Children’s ISA is the main My Purple Pledge sponsor for 2012, with the first commercial partner being EasyLink UK, which provides epilepsy seizure monitors.
Please visit for more information or follow My Purple Pledge on Twitter @purplepledge.

Around 6,000 of children have an extreme form of epilepsy, resulting in profound disabilities including physical, learning, psychological, and behavior difficulties, and a high mortality rate.  The complex and severe nature of their disabilities, combined with difficult to control seizures, make it impossible for them to find support in mainstream education.  Young Epilepsy provides continuous care to around 200 children and young people with complex epilepsy and other neurological conditions such as autism. This includes essential education, support and expert medical care on our campus in Surrey and a residential service, which is home to some children 365 days a year.

Tuesday, 20 March 2012

The Disability Diaries (The Life of J1) : Something I Am Thankful For (Supporting Young Epilepsy)

**Part of a Series of Posts Supporting Young Epilepsy (**

**Will You Take The Purple Pledge on 26 March 2012?**

From when we brought J1 home from the Special Care Baby Unit, at just a month old (weeks before he should have even been born) he used to 'jump'.  At first we assumed that this was the normal reflexes of a newborn, particularly as my little newborn should have still been in my tummy.

This 'jumping' continued as J1 grew, but like everything we just assumed it was all normal and part and parcel of a baby.  As he got bigger, they got more frequent and for months I just always put it down to J1 being 'spooked', and reacting.

However, the 'jumps' started to become so frequent, they made me start to take notice.  What I noticed was that J1 could be as calm as anything and have a series of 'jumps' and this was happening many many times throughout the day.  This was obviously just one of things that I had started to notice that was not quite right, but it didn't occur to me either that it might be epilepsy.

One of the very first appointments we had to attend was for an Electroencephalogram (EEG).  As J1 sat on my lap and ate his lunch, looking a little like Medusa with all the patches attached to his little skull measuring his brain activity, the enormity of the situation still didn't occur to me.  It wasn't until the 'Accidental' diagnosis letter appeared that I realised, part of the diagnosis was 'Myoclonic Jerks' (possible epilepsy).

This worried me hugely.  I sort of understood epilepsy and I knew that I did not want my child to have that along with everything else he was dealing with.  However, after the EEG, it was like one small miracle happened.  The 'jumping' stopped.  And from the age of about 18 months to 3 we didn't see any activity that would indicate any form of Epilepsy.

Then something different started happening.  J1 started having episodes where he would go trance like and we couldn't snap him out of it.  Back to the Doctors we went and they suggested he was now having 'Absences'.  Again I was unfamiliar, as far as I knew Epilepsy meant uncontrollable fitting, I had to get into research mode and find out what I could.

J1 demonstrated these 'Absences' from the ages of 3 - 5, but again, thank the stars, they seem to have stopped occurring and I pray and pray that this continues.  So many of J1's school friends suffer with this terrible condition, and on speaking with many of the parents, it is this part of their disability that they struggle of cope with the most. 

Charities like Young Epilepsy provide essential support to parents like me, and are working hard to raise awareness of just how much Epilepsy is affecting young people today.   I will be producing a series of posts on this blog supporting Young Epilepsy and their campaign 'My Purple Pledge' which co-incides with the international 'Purple' day to mark Epilepsy Awareness on Monday 26 March 2012.

If you want to make a Purple Pledge please visit the Young Epilepsy website to see how you can help to make a difference.  Please support those who do deal with living with Epilepsy.  I am currently classing myself as one of the lucky parents who's child is not suffering with this condition, but I certainly live under the cloud of 'uncertainty' and pray that it doesn't rain down on J1 or my family again. 

Thursday, 15 March 2012

The Plan - March

This post is somewhat late but I thought it was worth sticking to my targets no matter how late in the month, and the ladies over at the Groovy Mum's at Kate on Thin Ice have inspired me, yet again.

Firstly the round up on February goals.  Well, progress didn't really change much from the last update.  So closing the chapter on that month I am marching on, well March.

Straight on with it then what are my goals for the month that introduces the beauty of Spring into our lives :


- Do house filing once a month and keep on top of it all - Yes this is a roll over from February because I just soooo didn't do it.  However, the reason for 'I am going to have to do this in March' will become clear

- Child - proof new garden for the kids to use in spring - I wish it could be this easy and here comes the big one.  Having moved to a period property at the beginning of December, we were told we would either love it or hate it.  This is not true, for I both love it and hate it. 

I love the space it gives us and the obvious amazing character the house has.  I loved how it lent itself to the Christmas season so beautifully.  However, I am so sad that it hasn't been maintained as a house this old needs (and deserves).  The longer we live here the more issues we see (and detect) and of course, because we are only renting it is not our place (or cost as they are not 'a lick of paint' fixable) to try and remedy them. 

The crunch point however was when we went out to assess the garden...All I can say is if we open that can of worms I fear we would never find our way out (probably why no other tenant, or even the landlord has ever attempted it and why it has got to the stage it has now).  What is frustrating is on the surface it all looks ok, but being a parent and needing to do a safety assessment for the kids before they yell 'Charrrrrrggggeeeeee' we had to heartbreakingly come to the conclusion that we would not be able to let the children out.

Add this to all the other 'little' downsides (the longer journey to J1's school and my parents being the other main one, I didn't think it would make the difference it has), we have had to take the decision to move somewhere more suitable.  Luckily we have amazing agent, who has not only smoothed an early move option out with our current landlord but is gung-ho on getting our little family into a home (suitable for J1) and into a garden (suitable for J2) before the summer.

So, my main task for this month (and the coming months one would assume...) is going to be packing up our home again (cue shuddering at the sound of the brown tape already).  With that in mind, I don't think it will be that feasible to add any further items to the list for this month (I will continue with past months sucesses e.g J1's extra physio, taking J2 swimming, baking with the boys).

I do have just one extra though, that what with the hunt for a new home and the potential packing bonaza, I think I will be most entitled too this month...

- Treat self to a spa afternoon!

Wednesday, 14 March 2012

The Disability Diaries (The Life of J1) : Put yourself in his shoes

Since I started writing the Disability Diaries, I have had an influx of friends apologising to me.  Why?  They do not feel that they have involved themselves enough when it comes to J1 and how we cope with his disabilities.  I could be coy and say 'Thanks for admitting this', but that would be unfair.

I have shut a lot of people out since I had J1.  Not shut them out as in cut them off, we have remained friends and meet occasionally, but I didn't invite them into my 'new way of life' because I wanted to be selfish.  I wanted a few people who I could, for a couple of hours a year, go back to my old life with.

However, as I have got older, settled and had more children and most importantly learnt to fully accept the blow that J1 received to his life, I no longer crave that need to hold on to 'old life'. 

Of course, I don't want to lose those friends and they too have obviously grown 'older and wiser' and now want to know more about the 'real' life we lead.  I give them the normal information, about J1's difficult birth which resulted in the Brain Damage and the subsequent condition of Cerebral Palsy.  They know he needs a wheelchair and that my house is full of equipment.  But I have been thinking more and more, for the benefit of all my friends, or those not familiar with anyone with a disability about what I would really like them to understand and what the best thing they can do it.

I have concluded that the greatest thing they can do is try to fully appreciate where J1 is coming from, to have empathy for his situation.  But how do they gain that?  How can they understand why, although J1 is 8, he can cry very easily and over the smallest things?  Why he sometimes gets very crabby at us when we dress or undress him?  Why small children running around petrifies him.

J1 can not walk. J1 can not crawl. J1 can not roll. J1 can not sit. J1 can not turn. Unless you live or care for a child that can not do these things, I believe, it is impossible for someone to ever fully grasp the multitude of complications and effects that this has for that child.

For example; J1 can not roll. This means he can not change his position so at night he must rely on someone else to reposition him, comfortably multiple times through the night. Now, imagine how many times you toss and turn until you are comfortable enough to go to sleep or get back off to sleep and how frustrated you become if you can't. 

J1 can not change his position independently.  If J1 ever gets a bout of reflux, which he is prone to, and we were not there to hear and move him off of his back, he would choke. Now imagine how you writhe around if you have tummy ache. 

J1 can not crawl or move around.  If J1 has a toy and it falls just out of his reach, he can not move to fetch it back, he just has to lay and look at it until someone returns it to him. Now, imagine how frustrated that would make you.

J1 has no torso control.  In short his brain does not send messages to his core (chest, tummy, pelvis) to say sit.  So he is, in effect, a floppy rag doll.  He can not dress or undress himself, we have to move him in and out of all his clothes.  Imagine how you feel if someone just helps you on with a coat - you generally take the help, them promptly move away and make it more comfortable.  How would you feel being pulled around to be dressed and then not being able to adjust anything?

J1 can not walk.  He is wheelchair or equipment bound all the time.  Therefore he can not move himself out of danger or away from something he doesn't like, thus he is extremely sensitive to situations where children are running around him or being unpredictable.  Imagine yourself strapped into a chair, unable to move - would you be cool, calm and collected if an frantic activity was going on around you?

To try and empathise or understand someone with a disability, just try to put yourself in their position, believe me, you don't think about it very long before you think 'I don't want to think about this anymore.' because the scale you need to comprehend, and the challenges you would face are too huge to try and take in.  And you immediately feel FRUSTRATED, but you can stop thinking about it, and continue as normal.   

But for that child or person that is their life.  J1 has never known anything different and his acceptance and patience he displays never fails to make me stand in awe of him.  But he does have bad days and moments, especially as he is getting older, and I please say to anyone that witnesses those; just put yourself in his shoes.  And for anyone that really wants to be part of, and understand 'our life' -  just put yourself in his shoes.

Saturday, 10 March 2012

We're Going To The Zoo, Zoo, Zoo...

As previously mentioned in past blogs J2 turned 2 this week.  Many people fear their child turning 2, but considering J2 has been having 'The Terrible Two's' syndrome since he was about 9 months old, for me it was no scary matter.

J2 looking not so scary...

Having secured the knowledge that The Hubby would be able to 'work away from the office' I set about thinking about a suitable birthday activity for J2 to indulge in.  As it was Thursday we would be dropping J1 to school and then would have about 5 hours to spoil J2 with some one to one time. 

I sometimes have a hard time separating myself from my J1 thinking, of places we can not really go to, or avoiding activities / places that might 'upset' a sensitive child.  I have to remind myself that J2 is fully able bodied and a typical 2 year old who wants to charge around and have pure and carefree fun thus we can go and do all those things that I so desperately wanted to be able to do with J1 for all those years.

Although we try not to impose restrictions on what we do with J2, we try and make the weekends 'family time' and sniff out activities that we can all enjoy, and sadly, that means that a lot of places that J2 could enjoy we rule out because J1 won't.  And sometimes that just isn't fair to J2.  I do not say that in any way complaining, as J1 is getting older, his sensitivity issues are getting much better and we can not go to places that at one time I would never have dreamt we could (because of noise for example) but I have just got so used to not being able to do run of the mill things, and having to think / find J1 suitable trips etc that I sometimes forget that I can do all of those things for J2, and more importantly, should. 

So I decided that a trip to Colchester Zoo would be ideal for J2.  I know that it is big, but not too big, it has fantastic indoor and outdoor play areas as well as the vast array of animals and they are forever improving and extending enclosures, so it really does feel like your money is going back into the good of the Zoo.  Plus it is only a relatively short drive and I hadn't been there for years (the last trip had been an attempt at taking a very young J1 and he created hell most of the way round...).  After the beginning of the week gave us appalling weather, it was up in the air until the last minute as to whether would go, but fortunately Thursday dawned bright and dry, if somewhat chilly.

I can confidently say J2 absolutely adored it.  We could let him out of the buggy to run his little legs off for most of the day, as being a week day in term time it wasn't too busy.  In fact it was ideal, most of the other patrons also had toddlers running riot so we were like one big 'knowing and sympathetic' group.

I think J2's favourite part of the day was visiting the penguins, we could barely drag him away.

Followed by the playground...

But the biggest bonus of the day (for me) was discovering some brilliant baby changing facilities (including baby changing in the male toilets too) and (cue exciting music) they have an 'Adult Changing Facility'.  This is like finding the 'Golden Ticket' to us.  So we will be going back soon with J1 in attendance, as I think he would also really enjoy it now, and if that goes well Gold Passes might feature in their Christmas presents this year.

Friday, 9 March 2012

An Evening with Alexander McCall Smith - Essex Book Festival

I haven't been to an Essex Book Festival event for a few years, not for any other reason than I kept missing the time of year to look it up, so my own fault.  But having been on the writing scene again by starting this blog, and having frequent thoughts about the days when I will have time to sit and dedicate to giving my own book a go, the idea of going to listen to some well known and established authors seemed somewhat appealing yet again.

Having looked up the new shiny website, I was truly amazed as to the calibre of authors that are on the tour this year and I had a hard time picking who to purchase tickets for.  In the end my mum and I plumped for one each.  Last night we attend my mum's choice; Alexander McCall Smith (of The No.1 Ladies Detective Agency notoriety).

I have to admit, other than The No.1 Ladies Detective Agency novels, which again I have to admit I was only familiar with because of the TV series (that for a third time I have to admit, I have never watched) and my mum saying how brilliant the books are I was unfamiliar with Alexander McCall Smith, and my goodness what I have missed.

The man is a literary machine!  He produces four to fives novels per year on several different series (e.g. The Detective Agency; 44 Scotland Street; Corduroy Mansions; A Novel by Isabel Dalhousie) and is self confessed to being blessed in that he is a fast writer (quoted last night in response to a question 'About a 1000 words per hour' (jaw - drop - floor). 

But over and above everything was his sense of humour.  He spent two hours keeping an audience completely engaged without a script or even a note card - his years as a University Professor obviously came into their own!  I was worried that with a man with almost 100 books to his name would be very serious and intense but he was a hoot! 

So now I have a new author to which I am in awe, and an evening of laughter that will stay with me for many years to come.  I have a new inspiration and now almost 100 books to catch up on... Jodi Picoult you have a tough act to follow, but I can't wait for that evening either.

Wednesday, 7 March 2012

The Disability Diaries (The Life of J1) : The Biggest Battle

In the mountain of 'unknowns' we faced after we realised / officially got diagnoses / understood / accepted that my baby was physically disabled and not just 'developmentally delayed' as I spent a year wistfully hoping was the case, I had to start to face the fact that I was going to face 'issues'.

Like with anything that is new to you, you kind of just have to 'roll with it' and fly by the seat of your pants at the start (whilst frantically trying to research about the condition and what to expect / who to contact etc).  I had no real idea about who J1 should be receiving help from, what help J1 was entitled to, what services, therapies, equipment he would need and how would I go about getting them for him - how would I even know if he would need services, therapies and equipment.  Green, that was the colour of me.

As mentioned in 'We Just Don't Know' after diagnosis a flurry of activity started occurring through our letter box.  We were automatically booked in for various appointments with a huge range of 'ists'; physiotherapists, speech therapists, occupational therapists, paediatric specialists.  These appointments were 'investigative' so that the help J1 would require could be ascertained.  This, of course, was a huge relief.  I would not have had a clue where to start and it felt good to be seemingly moving quickly, getting J1 into see all these people that were going to help him.  J1 was successfully in the government 'system' and we were moving along at pace. 

I have never been one to 'go after what you can get'.  I have always worked and provided for myself and paid my taxes, never taking a penny or service, apart from school and NHS from 'The System'.  Therefore I never knew how to really 'deal' with it.  I so foolishly believed, that if my son needed something then the right people would identify it and he would be provided with it. 

But immediately everyone I came across pressed on the issue of 'getting what he was entitled too' with a little knowing 'you understand' nod and eye shuffle.  Little did I know that on many occasion you would have to fight to get even the basic things he needed, and of course that was what they were trying to tell me.  You have to remember these were not frivolous things.  Not luxury items.  They were things that J1's condition and the severity of it would need just to get him through day to day life.

I had no problem, and still do not in getting appointments to see the specialists.  Everyone J1 sees is very forthcoming and enthusiastic with their opinions of what he needs, what therapies, equipment etc would benefit him, it is easy to come out of these meetings, excited and buoyed about what this or that might do to 'rock our world'.  However, that excitement is short lived once you leave that initial meeting as it is actually getting those things, physically in your life, that is the biggest battle.

I have to say, up until J1 went to school I could not fault the quantity of help on a one to one basis that he received.  The physiotherapist would come to our house once a week for a full session and to refresh us on what we needed to be doing the rest of the week.  When he was old enough bi-weekly speech and language appointments came through.  We were put in touch with a fantastic special needs Health Visitor who informed about a Hydro Therapy session at our local Special Needs school and got us a place. 

We were also approached by another special needs school about a wonderful programme they ran called 'School For Parents' which we were lucky enough to be accepted onto once a week.  We even had an amazing carer come one morning per week who was qualified to look after J1 without me being there, she would usually take J1 for a lovely walk so I could have a bath, or go food shopping.

Those services / sessions I will be eternally grateful for because by the age of 2, J1 no long kept his arms in the classic curled up tight position, he could extend them, relax them, on some days better than others even now.  His thumb that used to close across the palm of his hand he is now able to use as you and I do.  And I attribute that to all the early help he received, and now continues to receive through the school system.

What I refer to in the title of this post The Biggest Battle, what we had and still continue to have the problems with is equipment.  Now equipment, I have learnt, is essential to being able to give J1 the most inclusive life we can.  He needs a wheelchair, but you can't have a child sit in the same position for 12 hours a day, so he also needs a 'house' chair (that he can eat dinner in, play in etc) so that he can vary between the two.  He needs a special bed, that is height adjustable and position adjustable for when you are changing him, dressing him, doing physio, hoisting him.  Then of course you need the hoist.  To assist with bowel movements and joint strengthening you need a standing frame so that he can be upright rather than sitting or laying all day.

There is NEVER enough money in the pot for every child to have these things.  Thus battle commences, and like at the start of any battle you go into reluctant, but you do it because you have no other choice.  You know people that you do not want to get stomped on will, but if your physio or OT can not get you what you need, you have to go to their superiors.  But my one word of advice to professions is this; do not lie to the parent.

The worst case of 'equipment battle' I faced was my first one.  I needed a chair for indoors (J1 was still young and small enough to go in a good buggy and I could still get away with a baby car seat) and was shown an array of wonderful 'life changing' options.  After spending a whole morning in April testing J1 out in the chairs and getting measured I was euphoric when I was told it would be ordered and with me in 6 weeks.  About 3 months later I thought I would drop a polite call into our OT, who told me that she had 'just discovered' the order had been lost and would be re-issuing it and it would be with me in 6 weeks.

Six months after the original order (and a further six weeks of the OT being 'unavailable') I finally got hold of someone who spun me the 'lost order' story again.  Incredulous that this could happen twice I stupidly accepted it and clung to the 'it will be with you in 6 weeks'.  It was at this time that we were put under the charge of special needs Health Visitor who took the bull by the horns and told me that particular department was out of funding and I wouldn't be seeing that chair until the following April when the new years money was received. 

Furious wasn't the word, for either of us, and her fury on the department did see us immediately receive a second hand chair to see us through to the following April and a specialist car seat.  It was a cruel and harsh lesson that I was going to have to toughen up.

That is why parents / carers of those people with disabilities have to find the energy to fight.  They have to find the energy to make those phone calls every day and push their case forward and get to the top of the pile.  You have to be the 'pushy parent' you never desired to be to get your loved ones name to the top of that pile so that funding pot hasn't run out by the time your application gets looked at, or that you aren't forgotten in that charities pile of requests.

But some days you just do not have that energy.  And you sit and cry and think 'Why when our life is already dealing with extra challenges should you have to take up that baton?'.  But if you don't no one else is going to charge in for you and do that battle cry.  Your child needs you to put on your boxing gloves and shiny shorts and fight their corner.  So you have to mount your steed, pick up your joust and charge.  Hopefully at the end of it you'll win.

Thursday, 1 March 2012


It is my belief that Toddler-hood should come with a public health warning.  It raises your stress levels to dangerously high peaks and can leave you physically and mentally drained, thus a danger to anyone who may throw you either a disgusted look or pity look in public, as your toddler goes into rigid ironing board mode, whilst screaming so hard they turn purple as you simply try to get them back into the buggy. 

I say this, because we have now hit, full on Terrible Two's with J2.  And despite J2 being baby number 2, this is all new to me.  I obviously lucked out like I could never imagine with J1, because (despite his disabilities), J1 never really went through 'Paddy Power Phase'.  Although J1 could not do the physical battles with Mummy, he could have been an uncontent shopper / restaurant baby, but he never was and I now realise that was grossly under appreciated by me.  In fact, I used to be the smug one in the Cafe, sitting with the happy, angelic child who was happy just sitting and taking in the world going by with a snack and cup of juice (or ruddy great hot chocolate with whipped cream on top if we are honest...) whilst harassed, hot and bothered mums used to leave hurriedly with a screaming tot in tow.

I am not saying that J2 is like that all of the time, of course not.  On occasion he is one of the well behaved children in a buggy.  But these particular 'toddler era' days are quite rare.  Luckily he tends to be a lot better behaved for other people than for me, but I think this is common of most children.  I had the opposite with J1, unless I was leaving him with my parents he would create merry hell, so at least I do not have that same separation anxiety with No.2.  He is in fact more than happy to wave me off goodbye if he has toys and attention going on.

However, it is all part of Motherhood, or actually Parenthood, as my Husband does get to see the problems that occur on a daily basis at the weekend and with all other 'difficult phases' ie. from struggling to breastfeed to not being able to keep your eyes open past 8pm because you are awake every hour attempting to feed, or your baby crying when s/he has to start going to a child minder or day nursery when maternity leave runs out, somehow you get through it (or so I am assuming, I am still amidst the throngs of 'Toddlerhood' but am hoping this is a safe guess).

By my goodness, it is tough.  Especially with J2.  This boy is the epitome of stubborn.  It is like the gene pool yanked out the DNA strand of my stubbornness with my husbands strand of spontaneous and it mutated into J2.  That said, he does make for kid that knows his mind, he understands when to be helpful and when to stand his ground and that I am glad to see in any child of mine.  I should have perhaps given 'Nanny' some warning of this however, when she decided to take him to the Park this week. 

I got a [rather amusing] text from her saying that they were having a lovely time at the Park until 'Thomas' age 3 arrived.  Then the 'Summers' competitive streak was unleashed in thy child and anything 'Thomas' attempted to get to he was gazumped by J2.  J2 thought that this was brilliant.  'Thomas' did not and in the end, just to give the poor kid a break mum exited the offending area with the promise of feeding the 'Ducks' (they are actually Seagulls that I am referring too, but at the moment all flying objects in the sky are 'Ducks').

I wasn't sure if I should be worried, that perhaps J2 had terrorised poor 'Thomas' but mum assured me that 'Thomas' quite liked the chasing around part and then I felt quite proud.  Proud that my little 'Terrible Two' could interact with another child at such a young age.  Again, this is all new to me as J1 did not interact at all well with any children until he went to school. 

It never fails to amaze me how 'chalk and cheese' my two children are, but I will say that with J2 being quite so 'spunky' it has forced J1 to be a bit more so too, which I do think is a good thing.  J1 now does have to raise his voice to call and ask for what he wants, but equally he has had to learn that he can not have his own way all the time.

Toddler-hood is a massive learning period for the child.  Like a sponge they are soaking up so many different things every second of every day, and right now I feel like I am too.