Julie Noted

my thoughts for your consideration

I’ve been away for a while ….. April 15, 2020

Filed under: Uncategorized — julesmc99 @ 2:59 pm

… but since I have a little bit of time on my hands now I figured I’d take advantage of it & jot a few things down. So watch this space if you want or don’t. I’m not sure what I’m going to write about at the moment but when I do – you will too! I hope to see you soon Xx

 

Julie & Ollie … here we go again. October 29, 2012

Filed under: Julie & Ollie,Uncategorized — julesmc99 @ 9:47 am

So today we have started with our new healthy lifestyle. I have done this many many times in the past but for whatever reason (& most of you know who the reason is LOL ) most of the time I crumble sooner rather than later. So that is why I signed up a team mate .
Ollie has made a few changes recently (with a little help from me) and lost a few pounds so this way we hope to maintain both our enthusiasm & the benefits and help each other on this journey. Tonight is our first boot camp session. We have to attend 3 this week so since Ollie can only do the evening sessions I decided it would be good to do the same sessions to help each other along. Plus of course it’s Half Term so I wouldn’t be able to do the 3 morning sessions.
A film we both love is ‘A Knight’s Tale’ & so let me just add that ” we have been weighed, we have been measured & we have been found ……. Yep! We need to do this!

 

LONG TIME NO SEE …..

Filed under: Julie & Ollie — julesmc99 @ 9:18 am

WOW it’s over a year since I last wrote on here – so much has happened.

After 29 years I was made redundant from the Bank, Alex & I celebrated our 25th Wedding Anniversary, I started a new Job and Cameron met Dr Daniel Goyal who changed his life for the better. However, it is none of those things which bring me back to this blog (although I may come back to them another time).

I am here today as Ollie & I are starting a new phase in our lives to get healthy – we have both seen what part NUTRITION can play in your health & well being by witnessing the changes in Cameron – and so our journey starts today Monday 29th October 2012. We are kickstarting things with BootCamp! So watch out for further updates on our progress, both pleasure & pain ; )

www.bootcamphertfordshire.co.uk

 

The Side Of Someone No One Else Sees … June 7, 2011

Filed under: Uncategorized — julesmc99 @ 8:45 am

We all have a side only the people who know us intimately get to see.

My husband is both direct & funny.  Don’t get me wrong after knowing him for over 27 years I know him pretty well, the good the bad & the ugly and I don’t mean his ex-girlfriends LOL!

The side no one else sees I would like to share today on here. A couple of years ago Alex wrote something for Cameron on his birthday. It sits proudly on our bookcase but is often overlooked. I read it this weekend which prompted me to share it with a very dear friend, we both got a tad emotional.

I want to share it because I think it encapsulates the feelings of many people I know and may help them seeing their feelings put into words and maybe even give a little hope about finding our true child one day. Here goes – and if I get into trouble so be it. It’s worth the risk!

Cameron my love for you is eternal

I know that your undamaged spirit is out there &

someday, somehow, somewhere

I will find you

You have taught me the meaning of selfless love &

I am more of a man because of you

I Love You Son

Happy Birthday X

Daddy

OK so if this was on paper it would be a bit soggy now and the ink would have run.

Alex, I am very proud of you for writing this down and I hope it helps other express what they feel.

I guess I couldn’t have chosen to obey anyone better for the journey I was to embark on, so thanks for staying on the rollercoaster with me and sharing the journey. Love you  ‘Always & Forever’ – sorry the obey didn’t last as long as you may have hoped – I grew up 😉

Julie xxx

 

The Definition Of The Word ‘Friend’:

Filed under: Friends & Family — julesmc99 @ 8:16 am

Friend (frnd) n.

1. A person whom one knows, likes, and trusts.

2. A person whom one knows; an acquaintance.

And that’s aside from the new term (verb) as in ‘to friend’ someone on sites such as Facebook etc.

I know we all have many friends in varying degrees of both longevity, closeness & confidantes. This is because friendships begin and build in many different ways. Some people you meet at school or work and spend many hours, days, weeks, months & years with them forming a bond that will have developed over time. Others start out as acquaintances of other people you know and you find you have a lot in common and a friendship forms.

In either situation things can change. Either one or both of you move on in your life in different ways , be it work, a relationship, a change in location or plain & simple we grow up. I have come to notice a true friendship can overcome some of these things. However, sometimes when people themselves change it’s not so easy, or worse you get to know someone so well that you find out things you are not so sure about and it affects both what you think of them, how much you actually like them and how much you actually want this person in your life and that of your family. Basically you start to realise ‘this isn’t working anymore!’ – I know sounds more like a relationship break up LOL “it’s not you, it’s me …”.

I think people really do like to be treated as they treat others generally but there are those people who don’t treat others the way they want to be treated and that’s where the problems start. It’s like they truly believe that everyone else was put on earth to accommodate them.

Opportunities for friendship to be proven occur over time. Energy spent on someone else purely for that person’s benefit simply because you want to provide whatever they need, whether it be company or a friend, in whatever form. It could be chatting on Facebook, a phone call here & there or girlie chat’s over coffee (substitute manly & beer as applicable). If that time and effort is only offered because something is required in return then it proves nothing except my point. That’s not friendship, that’s just using people.

For instance I knew someone once who was very upset after a meeting about their child. Their partner was away so at the drop of the proverbial hat, Alex & I decided I should go to see her. It had to be a joint decision because Cam was at home that night. So despite our own difficult situation and having to get up for work the next day, off I went. After many hours, more tears but some laughs, I like to think progress was made. I think it was then I agreed to take  a day off work to accompany her to a meeting with various professionals as moral support. And I did. Because that’s what I wanted to do and that’s what I had said I would do. I was being a friend.

Now in all the years I knew this person I had Cameron. During that time Cameron had numerous stays in hospital and not once did they visit me/us. A couple of “I’ll try to pop up” remarks but nothing ever materialised. Not a problem in the main, in the latter years I had my virtual visitors via Facebook to keep me company (still not that person I might add!) but even that is hard when you are in a room with Cam who needs constant supervision and who is such a light sleeper! Then there was this one particularly tough week in hospital. It was horrendous. Cameron was going through what appeared to be something like cold turkey although we didn’t know why – still don’t. His grandparents said they would visit but couldn’t in the end as did my ‘friend’. To be honest, it was one of the worst weeks of my life. Alex was working then coming to see us for a while before heading home to get up early again and doing the same thing over and over … like Groundhog Day but nowhere near as funny! We left hospital Friday evening and this person offered to come see me at home. I just wanted a bath and to sleep in my own bed so put them off. Seriously all week with no one to talk to and you want to come see me when I’m back home with my husband (Hmmmm)! Anyway the next day they came round. There I was thinking how nice of them (I’m obviously easily pleased because of the lack of visitors we get) until a couple of weeks later I was sticking up for them in another conversation when Alex told me! “I phoned her and said you could really do with a friend right now”. To be honest I was quite taken aback. Since when do friends need to be prompted like that especially when they know your situation so very well. I didn’t need prompting with my offers of friendship & moral support. If I had wanted to I could have let other people know we were in hospital but we don’t always advertise hospital stays because over the years there have been so many and with Cameron it’s not so straightforward and they are not always local.

In hindsight they more than likely came to talk about something else completely before I heard it elsewhere. So who or why did they come to visit? To comfort a friend after a difficult week? Because they couldn’t say no to my husband (Hmmmm)? Or because they wanted to share some hot off the press news before one of our other friends got to tell me?

And have you ever had a friend who tries to drop you in it! Nothing serious but just little things you may have mentioned as you do, about say your husband. Then when you are all together she will make subtle and not so subtle references which could cause a small issue with hubby if he was to realise. Say like when you say “There I was doing the garden, cutting bloody trees down and all he did was watch football!” (Just an example btw.) So then whenever football is mentioned in the future your friend says something like ” And what were you doing Julie cutting more trees down?! Like I say nothing to worry about but why do it. As the saying goes: It’s not big and it’s not funny! Luckily husband apparently took less notice of her than I thought LOL. I mean no one wants to know you’ve been moaning about them to others …. especially your husband.

I mean I realise you can’t dictate how people act all the time and that you can’t lay down conditions and rules for a friendship. Friendship is built on a mutual trust & respect basis or should be. So if that isn’t the case is it real? Maybe friendship is just more organic it grows appropriately to your situations and needs and as discussed recently, some people come into your life just for a reason, to teach you ……. maybe to teach you that not everyone is there for you. Don’t go sharing everything you have with someone who will offer you nothing in return.

So essentially you have to like, know, and trust someone for them to be a real & true friend in my humble opinion.  Like friendships, trust is something that usually builds over time and TRUST is one of those things that once broken is very difficult to put back together. Even if you manage to fix it you can still see the cracks. They will always be there and sometimes it’s just better to cut your losses and walk away.

This is one friendship that is not meant to last and it has run its course. Don’t hang around to be mistreated further. Spend more time with people who are special to you and who you can trust and rely on. Remember you have real friends who treat you good …. because you’re worth it. Always remember that 🙂

And on a lighter note: Since when could we no longer put our coats away for the summer? We seem to need access to them all year round now especially for the kids! 😉

Longest post so far I think.

 

Everyone comes into our life for a reason . . . . . . June 5, 2011

Filed under: Friends & Family — julesmc99 @ 10:47 pm

…… it is our responsibility to learn what they have to teach us.

I have often said that the positive in having Cameron in our lives are the fantastic people we have met and if it wasn’t for Cam we wouldn’t know these people exist. By the same token some people have moved on in different directions and I hope we have learnt what we needed to from those people. Most we are still in contact with even if it is not as often as it used to be. Others we don’t have contact with, maybe because that is how it must be. A lesson has been learnt (sometimes the hard way) and we have learnt that not everyone is as good-natured or has such good intentions as we would like to think. A friendship should never be taken for granted. It should be nurtured for it is a special bond that should be cherished and we never quite know when it will be in full bloom.

Sometimes we lose touch with people, friends who were a big part of our lives but things change, we all have stuff going on and life moves on. Then a chance meeting in M&S and one thing leads to another. It may take a while but the next thing you know you are back in each others lives regularly and you know it’s meant to be when it’s like you’ve never been apart, your friendship has grown over the years, as you both have and it’s one of the most solid things in your life. When you see the word friend – that’s the person you think of.

I pride myself that I have many good friends and love it when I meet up with old friends, I haven’t seen for years and it’s like you never lost touch. I first noticed this with Ollie & his friend Rory. They can go a year without seeing each other (the Atlantic Ocean is mostly to blame for that!) but when they meet up they chat like they were at school/work together the week before. And over the last 13 years it’s always been the same. I love it! It all started when they met on holiday and ever since have been credited with founding a fabulous institution of friendship. Both families are now close friends and I once mentioned that if it wasn’t for Cameron we would not have been on that holiday at that time and they & us may have never met. Our friend said I have a feeling that we would have met somewhere, somehow. You know what I think I agree. It was meant to be.

There’s been more mileage than usual in maintaining this friendship and we have met up in some amazing places. We have all learnt many things from each other – including we love to travel, we like shopping more than them, they can travel with less luggage than the McCulloch’s (except Ollie!) and we all love various & sometimes numerous alcoholic beverages.

Then, there are really amazing people who just get you without even really knowing you. This may be a contradiction but sometimes people just get you. Maybe this is just the beginning of what will be a beautiful friendship however brief it turns out to be. Although with the invention of social networking sites it makes it easier to stay in touch and with our impending redundancies I am glad Facebook is in my life, hopefully it will be easier than my last big ‘leaving do’ – leaving Cornwall 30 years ago and then having to wait for the technology to be invented for me to find my old school mates!

There are lessons to be learnt everywhere we look but sometimes we are just too busy to notice.

 

Time to face reality! May 30, 2011

Filed under: Cameron aka Special Needs Stuff,Friends & Family — julesmc99 @ 10:28 pm

So apart from the odd rant, usually about the school nurse, I think I paint a fairly good picture of our lives on Facebook and to the world in general. Well of the good stuff anyway. No one wants to know how many seizures Cam has had this week, how many shitty nappies we have changed this Bank Holiday weekend, how many times Alex & I snap at each other because Cam isn’t happy and we don’t know what else to do. Then go & have a cup of tea and carry on as normal.

Some people will know the above anyway, either cos they are close to us or because they ask, out of interest, concern or curiosity! It has always, well once I got my head round the situation we have found ourselves in, amazed me how different people are with our situation, us & especially Cameron.

After 16 years plus I have seen lots of reactions to Cameron whether it be kids in the supermarket staring or family visiting our house. Some choose to ignore the situation (& Cameron) others embrace it full on, without hesitation. The strange thing is when you expect a certain person to act one way and they shock the hell out of you by doing the opposite.

Sadly I have often thought that if anything was to happen to Cam, there are certain people who I would not want to be involved in the after math. They don’t care about him or us now so why would they want to be involved at a later date. I dislike the falseness of it all.

I mean, I know we can’t all be honest about every little thing, all the time. “You look awful” doesn’t go down well so we would generally ask “How are you?” and hope the response will indicate if there is a problem we should delve into further etc without offending. And we might say to one friend something we feel about another mutual friend which is an observation we would not point out to them direct, because it’s just not polite or productive in most cases. Obviously some people struggle with social boundaries & etiquette so there are exceptions as with every rule.

And I know we all lead busy, busy lives, but surely with all the modern-day forms of communication, most of them instant, email, phones, texts, instant messaging, tweets, why do people seem to communicate less. Well less with their larger group of friends & family and more with a smaller group of close friends, to the point of telling them every single detail of their day, on a minute by minute basis.

Have I set my expectations too high? How much contact should one expect from brothers & sisters once you are all grown up and have families of your own? Does how close you were as youngsters affect later life? Or do outside influences take over? What about parents? When do they stop being your parents? Or taking an interest in you & your family unit? I can’t ever imagine not being involved with my kids but as I have two boys maybe I will have to take a back seat for very different reasons as Ollie & Cam get older and leave the nest?

Despite having Cameron, Alex & I have always tried to maintain that family closeness (it was one of the first things Alex noticed about my family) but one thing led to another and it became very hard work. All those gatherings at our house were great but the next morning we found ourselves clearing up after everyone & looking after Cam. While everyone else enjoyed their day, especially at Christmas time.

People see us as independent and maybe even a little bit stubborn. I don’t think they realise we have had to be independent – if you have no help there’s only you two to deal with the situation. And while this has possibly been partly responsible for making Alex & I stronger it would have been nice to see how things would have been with a support network. That phrase was first mentioned during a review with Cameron’s Social Worker (number 5 or 6 I think!). I literally did not know what he meant. When he expanded about family, our parents & siblings I found myself explaining reasons they could not possibly help us. That was when Cam was younger – no excuses needed now it’s bad enough finding reasons to cope for ourselves!

Is it just a matter of organisation skills? I mean if I can remember stuff, plan stuff, arrange family things and deal with all the other crap I deal with surely anyone can? Or is it that they are happier just to downsize to their own family unit plus a few other family members? Or do they just decide they don’t like you but are being too polite to say so?

I remember after one Christmas break a few years ago I went back to work and a long time friend and colleague asked me if I’d seen all the family over the Christmas/New Year break? We hadn’t been away & Cam had spent a few days in respite but the answer was no. We hadn’t seen anyone. My friend said “Oh, but if you had a crisis you could rely on them to be there for you.”  I did not think, my reply was totally off the cuff, “How much more of a f**king crisis do I need to be having?”

Are others really just more content than us because they are not dealing with all this shit (literally) and so have no need to maintain contact with family & friends. Or do they still not know how to deal with our situation even at a distance.

For many years people used to tell me that perhaps people just didn’t know how to deal with Cam? By the time he was ten I used to answer “Well you know what they’ve had 10 years to get used to it & no one told us how to deal with this. All they have to do is say hello and it’s not like he’s gonna keep them in conversation is it! They can then move on.”

People may not know what to do or say about the whole Cameron scenario but for future reference and if anybody ever reads this and knows someone in a similar situation:

They don’t necessarily need a babysitter or help with their child. (We have had that covered for years now.)

But it is difficult getting anything done around the house while you have a special needs child around. Especially when it needs two of you for the caring role. If you have a trade maybe you could offer to help them with the garden or decorating?

Or sometimes it is as simple as popping round for a coffee or beer to break up the routine of caring. Or if they can get out separately maybe they can take a turn to go out and talk over a coffee or beer with someone who doesn’t want to know about all the boring stuff they deal with – we have our own networks for that (my special needs mum’s again – still no name for us!)

Underneath all the other stuff is still your brother, sister, son, daughter, cousin, niece, nephew, aunt, uncle, friend. They’ve just taken on an additional role that has been thrust upon them. They certainly didn’t ask for it and they can’t give it back.

Do what you can for them no matter how small it may seem especially if you know (and you do know if this is the case) that they would most definitely be there for you if the tables were turned or you were in a difficult situation yourself.

Pay it forward >>> What a fab film that was/is! Loved it 🙂 x

Julie

No offence is meant by any of the above comments to any individual living or dead. I’m not even sure it makes sense!

 

Keeping Calm & Carrying On. May 17, 2011

Filed under: Cameron aka Special Needs Stuff — julesmc99 @ 10:20 pm

... & Carry On.      This image is pretty much everywhere nowadays. I first saw it as a print (in an expensive shop) and loved it! One of those short, sharp statements that are just perfect for certain situations. I know everyone can identify with it but I have to highlight again my special needs mums (we need a name, I can’t keep typing that!). You would not believe how many times we find ourselves in situations where if it is not our ‘special’ child it is an annoying doctor, civil servant, (yes I’m going to include her) school nurse, disability advisor or wheelchair engineer who has chosen to be in their profession yet does not seem to want to actually do the job. I often find that something I’m not too sure about is taken up by someone for me who will then get another person to ring me to discuss what I need to know. They ring to say they need more time to find out the details and haven’t forgotton you (if you’re lucky), and then ring back to tell you a) what you asked, plus b) clarify why you need to know, plus c) minimal information which basically repeats what they said for a) & b) and then suggest that you contact citizens advice or some other superior office?! You put the phone down and think to yourself  ” Someone out there is getting paid for repeating back to me what I already know and referring me somewhere else!”  It’s then that you want to bang your head against the brick wall so to speak.

I mean a school nurse who seems to have a desire to run a Weight Watchers or Slimming World Club rather than nurse – seriously. When attending these as I have over the years people often hit a plateau or put on a little even if they’ve been good (I know I know) and the consultant suggests things and tries to help. So we had a situation where obviously Cameron needed to gain weight and has practically doubled his weight (without any help from her I might add). Yet having lost a few pounds (well 2kg) actually from Jan to May it’s a big issue! Why? Why can’t he perhaps be just stablishing his weight – that’s a pound a month which is negligible and he’s growing taller. Even the Dietician has said they don’t always expect  a growing child to put on. If they are getting taller, staying the same is as good as a gain. How many times should I point out to the nurse that the weight chart she is holding is for mainstream kids and it’s based on averages. Cameron is not average in anything why should his weight be any different. I mean does she seriously believe that his weight should be that of a ‘normal’ 16 year old boy? When he is blind and bound (not literally you understand) to a wheelchair. He isn’t tempted all the time by things as we are and if he was he couldn’t go and get them anyway. A few years back she even tried to compare him to Ollie as a teenager, what he did and what he ate. Hello! She doesn’t know Ollie. How does she know what he did or didn’t eat. She is using generalisations about both my children who are so very different which just reaffirms my thoughts that she knows absolutely NOTHING about children especially special needs children.

An OT who is as much use as a chocolate teapot. We have been chasing for Cameron’s bed to be looked at – he appears to be sleeping downhill as the bed is slanting downwards one end. Told her ages ago. Chased it this week. She rings up to see what is wrong with the bed so she can tell the engineers. “Tell them it’s the same problem as before because nobody has been out to fix it yet!” D’oh!

The list could go on as many people who have heard them already will confirm but for now I will do what I always do and …

KEEP CALM AND CARRY ON.

Lots of Love x

 

Taken the wrong way?

Filed under: The knock on effect! — julesmc99 @ 9:36 pm

This entry is specifically to clarify a point, as Alex has said that he read my first entry and thinks it could be taken the wrong way or misinterpreted.

So for the record let me reiterate:  This is MY blog. So I can write what I like. It is neither in my nature nor my intention to offend or upset anyone. However if upon reading something I have written YOU take it personally or misread my point then that is on your shoulders. I cannot be responsible for how you feel or think about subjects or if by chance I touch a nerve. Obviously I don’t know what is going on in everyone else’s lives (despite what Alex says & thinks about facebook) so it may well be coincidence. Like when you see a friend has a great status on facebook which totally catches your mood you are tempted (& sometimes do!) copy it to your own status. And by the same token when you read a status that hits home a little bit, it’s not like they necessarily put it there to have a go at you – if they have I’d review your friends LOL.

Think of it a bit like one of those columns in a trashy magazine. Sometimes you agree with what the bloody Z list celebrity columnist says!! (God forbid) and the other 99% of the time you think they talk utter rubbish!  But then who cares what they think 🙂

I suppose I could just upload some photo’s of the kids & some holiday snaps with a running commentary of how many nappies I’ve changed so far in my life but I’m gonna hope that you find MY blog a slight improvement on that.

Anyways boring stuff: Gym & healthy eating going well further updates to follow but not too often eh? 😉

 

Check out Alex’s latest photo’s on www.cameraderie.co.uk May 16, 2011

Filed under: Fun, Fun, Fun! — julesmc99 @ 3:25 pm

Alex takes a lovely photo and I don’t mean pictures of him. He has quite an eye it seems.

Check out his latest, especially the ones under Tasha, Brighton 2011,  & Abstract. Got to think of something to do with those!

We are running out of wall space so if anyone wants a print upto A3 size let me know.

www.cameraderie.co.uk

Can’t believe he’s deleted some of my favourites 😦