Cold and the memories it brings back

Yesterday was one of the worst times for feeling cold in my life.  We were heading to the SWAN North East get together for Christmas at the Alan Shearer Centre in Newcastle and we were really looking forward to it.

Firstly, we had to navigate the path to get to the car which we didn’t realise was covered in a film of thin ice and it almost had me flat on my back when my walking crutch slid out from underneath me.  Almost simultaneously someone further down the path slipped and hit the floor with a thud.  Luckily they were fine and I managed to get into the car without breaking my own neck as well.  It was so cold though.   It was the kind that seeps into your bones and makes you freezing cold from the inside out.  Not even the car heaters could touch how cold my ears, nose and cheeks had become.  It got me thinking about when was the worst time I had felt cold and that was when I lived in a house with my mum and sister in the Fairways Estate.

It was one of those houses which had the traditional outhouses but the outside toilet had long been put out of use, nothing was powered by coal anymore so they had become storage areas for bikes, tools and all the other rubbish that you accumulate in a house.  I would hate to think how bad it would have been to use the outside loo in the freezing cold weather we get here!  Anyway, the house was fairly large with 3 bedrooms and a bathroom upstairs and a living room, kitchen/dining room downstairs which had a passage leading to the back door and the rear garden.  The house was in fairly decent repair apart from two things,  the first being the hideous wood panels that lined the wall of the kitchen/dining room.  They were horrendous.  You know that typical 1980’s style ‘fashionable’ panels and they sat about a foot off the actual wall surface so it made the room smaller than it should be.  The second thing was the windows.  They were the really old single glazed kind of window which was divided into squares but they had another key thing wrong….they didn’t close properly.

The windows did close to a certain extent so that you could lock them but for some reason the frames were a little warped and  they had large gaps that would run around them.  This  meant that the outside temperature often dictated the inside temperature of the rooms.  We were having a really cold snap one year and that meant the cold air would seep in through these gaps into the rooms.  I was about 12 or 13 at the time and was doing what most teenagers do, hibernating in my room.

I vividly remember waking up one morning and I could see the breath coming from my mouth as I exhaled.  Looking over to the window I could see the ice that had created a film over the panes of glass and it had a distorting effect similar to that of a bathroom privacy window so nobody could see in.  It was only as I got closer to it that I realised it was on the INSIDE of the window.  Yup, the room was so cold the inside of my window had frozen.  I knew I had to get out of bed to go and warm up in the living room which was the only room that seemed to retain the heat.  Fortunately, by this point I had developed a system of getting dressed with minimum exposure.

It was a shuffle to the underwear drawer and wardrobe with the duvet wrapped tightly around my body.  A darting hand grabbed whatever clothing I could get my hands on and then it was a quick shimmy (still wrapped in the duvet) to put them on and finally a sprint downstairs to the warm air of the living room. Ten minutes by the fire was enough to warm you up and banish some of that lingering cold.

It wasn’t just the bedrooms that were cold though, imagine getting a bath in those conditions!  I think we all had the quickest baths of our lives in that house, never more than a good wash and sprint to get into bed or get clothes on so that you didn’t get a film of ice on your extremities. (I just laughed out loud thinking about icicles on your ‘you know what’.)  The kitchen was pretty bad as well.  I can remember boiling a kettle to make tea or coffee and holding my hand above the steam, not too close of course, to try and steal some of the heat to carry the cups back into the living room.

My mum had an accident due to the cold one day though when she was cooking something in the oven.  She had taken the grilling pan out of the hot oven and put it on the worktop.  She didn’t realise she had touched it with her skin until she tried to pull away and found she had slightly stuck to it and burnt herself.  It was that cold there was literally no sensation in her hands.  Thankfully there was no permanent damage, but it just goes to show just how bad that house really was!  Thankfully I wasn’t there for too much longer but I can honestly say that I don’t think I have ever been as cold as that any other time in my life.

When in your life have you been the coldest?  Was it a certain situation or a certain place that you can remember?  I would love to hear yours so drop me a message and let me know or write a post on it and I will stick a link up to it here.

Until next time folks,

Stay Safe and Keep Smiling (Keep Warm as well).

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Busy, Busy Bees!

Heya folks, we have all been busy, busy bees in my household recently.

Busy Bee

We have all been doing well, except for my sleeping but that is always off so no big news there.  I have had some fantastic news today about my Type II diabetes…..  I have it managed and under control with NO MEDICATION!  This is coming from a guy who, at the beginning of this year, thought he was going to have a heart attack in the next year or so (as my doctors informed me) and was at higher risk of cancer, stroke, heart problems etc.

Top right – 315 lbs, top middle – 308 lbs top right – 301 lbs
Bottom right – 301 lbs, Bottom Right – 294 lbs

I truly started my weight loss journey properly at the beginning of this year in January when a new Slimming World class opened up in my area.  I decided to go to the classes just to keep me focused and motivated at first, but even before that I had been desperately trying to lose weight.  I am 5 feet and 8 inches tall (a shorty for a guy I know) and at my heaviest I weighed a whopping 315lbs….yes I shock myself now when I think of it!  This was through a combination of back problems, pain, inability to do exercise and also some pretty lame excuses really.  I never used to pig out on food anymore since I got my binges under control but by then the damage was already done.  I did eat the wrong foods when my emotions got on top of me and that was really hard to break away from.  I have always used food for ‘comfort’ eating which again, was another habit I found hard to break.

I can say now VERY HAPPILY as well I might add, that I am a massive 78lbs lighter than my heaviest weight and I have lost a whopping 16 inches from my waist!  My sister came around the other day and I grabbed my suit I wore last year and put it on and showed her.  I was lost in it and I think she got a bit of a shock from it as well.  It felt great to be able to ‘show off’ how well I have done but I still find it hard to accept the credit……yet.  I don’t want to get too complacent because I still have a fair bit more weight to lose to be at a healthy weight for myself.  I don’t want to think that I can sit back and relax and not keep striving for that ultimate goal.  In two years time it will be my 15th wedding anniversary and I would love to be able to renew our wedding vows looking like a million dollars.  Zanna has been doing fantastically well in losing herself but she really shines at helping me with my loss.  She puts up with the grouchy, sleepless monster that waits to lynch her in the mornings sometimes and she puts up with the indecisive, picky, annoying, stressed hubby when he cant figure out what to eat for dinner.   It is just another way in which she makes my life a brighter place and I would not be anywhere without her.

Writing away

So, what else has been going on?  Well I have been tapping away at the keyboard loads writing creatively for university and I am having so much fun and I have been reading books, plays, poems etc. like they are going out of fashion.  I will hopefully get chance this week to write the piece for Natalie from turkishtravelblog.com after she gave me the words yearning, historic and masterpiece.

We have also been doing a bit of work with Addison Street Carers Association who organise events for the children who use the local short break care unit that our daughter, Pretzel, uses.  We have had a spooky Halloween party, we had some of the members in Newcastle Keep doing a sponsored ghost hunt, we have the Christmas fair and Christmas party coming up this week as well.  It should be a great time and we always have a good laugh and a lot of fun with the kids and staff from Addison Street as well.

We are also meeting up again with some of our lovely SWAN North East buddies at the Alan Shearer Centre in Newcastle this Sunday which will be fabulous.  It is so nice to meet up with other families who can fully understand how intense and tiring caring for an undiagnosed child can be and just how little help is given to us because our children don’t fit a check box.  There is no judgements, no comparisons and no prejudices in the group, just a lot of kids and adults getting together and enjoying a good old chin wag!

So by the time we get all that out of the way we should be heading towards Christmas Day itself and then into the New Year.  I am starting to think now about New Year’s resolutions after the success of my weight loss one this year.  Obviously I will be keeping that one carrying on but it would be nice to challenge myself with something else as well.  Maybe write a novel by this time next year?  Maybe to get more involved with SWAN UK?  Maybe to do more exercise and have more family time together?  Who knows, there are so many!

Have you thought about resolutions or goals you want to set yourself for the upcoming year?  Tell me about them because you never know we may be able to do it together and spur each other on!

Okie dokies, until next time folks,

Stay Safe and Keep Smiling!

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SWANderful days out!

Hello there folks, I thought that I would write a post about having an undiagnosed child and the support (or lack of it) that we have been able to find for our family.   Nobody ever seems to be forthcoming with this kind of information and it is something that is vital for any family who was going through a similar situation as the one that we deal with on a day-to-day basis.

When Pretzel was officially determined as disabled, we were given no information on any kind of support groups, families or any other kind of services that could provide us with support, guidance and help in dealing with the news. Even now, because Pretzel has no official diagnosis, help can be sporadic and also withdrawn for any number of reasons, whether it be funding or that she did not ‘ fit the criteria for their charity to be able to help.’

There are a number of organisations local to where we live who attempt to provide day trips and outings, play areas and other recreational activities for disabled children, however, not all of these places or activities are suitable for children who have extensive special needs or those who do not like busy and noisy environments. This is the reason why families with children like Pretzel often feel isolated, cut-off and that they are dealing with their problems on their own.

This is why the idea that Swan UK has had of creating separate groups for each area of the country (we fall under the north-east category) means that families local to one another can get together in a social and caring environment which caters for all of the children and their particular needs. My family recently attended a North-East get-together for a picnic in a local park and it was fantastic to get to know some of the faces behind the forum names and also meet the children and let them play together with no form of judgement or ‘sympathetic’ looks that make the children and their families very self-conscious.

It was amazing how quickly the children engaged with each other and also how quickly the families started talking to each other about all kinds of aspects of caring for the children but also everything that they like to do that isn’t involved with caring for the children. This last point is probably the most important because when you deal with children with complex medical or physical needs can be very tiring, it can bring your energy very quickly and can often lead you to use shying away from social interaction of any kind with anybody including other members of the family and friends.

It is saddening thought to think that there are not more places but can offer this type of help to families in our situation but it makes me feel hopeful that organisations such as Swan UK can provide such an opportunity for children and their families to do activities together but in an environment where there are other families experiencing the same situation the same worries, the same anxiety and often the same opinions on how to get through the toughest of days that others who are not in this situation can find difficult even to imagine.

It is funny to think that a network of people who’ve never met each other, or, who have had very limited contact with each other, can be so close to each other as a family. Swan UK has a fantastic group of members who send birthday cards, get well soon cards and who offer words of support to each other through the good times and bad times 24 hours a day, seven days a week, 365 days a year.  The sad thing about this is that this type of support relies on charity and donations and is not something provided by the government. It often demeans carers and also the people they care for to have to rely on charity to be able to purchase essential equipment, services and facilities.

I do hope that Swan UK managed to secure the funding for these local get-togethers as it has been the first time that my family has been able to go out and enjoy themselves without any kind of ill feeling or embarrassment to simply ‘be who they are’ and be understood by other people’

We have another meeting on 1 December this year where we will be attending the Alan Shearer activity centre in Newcastle which has the facilities to allow our children to play in a hydrotherapy pool, ball pool and soft play and a sensory cave together.  This will probably be the only opportunity for our children to experience this kind of phone over the Christmas period as it is often difficult for us to organise all of the essential things that we need to be able to take pretzel out to enjoy these activities on her own.

If you would like to help out Swan UK and support their wonderful work which includes these types of days out and activities for children like pretzel to enjoy, then you can donate at: https://uk.virginmoneygiving.com/fundraiser-web/donate/makeDonationForCharityDisplay.action?charityId=1002602&frequencyType=S

If you do make a donation then please could you please comment in the Message Box stating that it did for Swan UK. That will ensure that your donation gets to the correct part of the Genetic Alliance.

Thanks for listening folks,

until next time Be Safe and Keep Smiling

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Haiku: getting creative

Hey again folks, I thought I would let you see some of the haiku that I have been writing as part of my course in Creative Writing.  I have been trying to do at least one per day on totally random subjects that happen to come into my consciousness so they are a little strange at times.

Sorry the posts haven’t been as frequent as they have been in the past but I am battling with new medications and for some reason my brain won’t allow me to sleep at all lately so I am suffering all of the side effects that go along with that as well.  A big thank you has to go to my wife and the kids though as I can imagine I am a complete nightmare when I am tired, run down, ill and grouchy.  I love you girls loads and thanks for putting up with Mr. Grumpy-chops!

The time I have been wide awake has been spent reading loads of books on loads of different subjects and in loads of different styles and genres.  It has made me realise just how far I still have to go to be able to write as effectively as I would like to be able to.  It has been a thoroughly enjoyable experience so far though and I will try and share what I can with you lovely folks when I get the chance.

So here we go with a selection of haiku written by yours truly (oh,  a Haiku is a 3 line piece of prose that has  a 5 syllable, 7 syllable, 5 syllable line structure):

(Haiku)
俳句

(A rainstorm)

Swirling, Twirling Round

A fresh wind blows through my mind

Rain pours down ideas

(Break time)

Hot, Steamy, Milky

Sugar sweetens up the brew

Crossword time at last

(Cheesecakes)

Sharp, Fruit filled

Buttery biscuit bases

Creamy Goodness, Yum!

(Daughter playing Minecraft)

Clicking, Tapping fast

Block after Block building more

Will the game end soon?

(Werewolf film on tv)

Pitch black, moonlight skies

Changing, morphing, quite close now

Screams pierce cold night air

Books, Books, Everywhere

So many things I must read

Shh! Quiet time please!

 

Granted they aren’t anything spectacular or anything particularly deep and meaningful but it has helped me to look at things around me in a totally different light and it has definitely made a difference to the pieces I have been playing around with.

What I would love for you folks to do though is give me 3 completely random words or phrases that you would like me to write a short piece about.   I will try to write a nice short descriptive piece about the story it formulates in my mind and then I will post it up here on my blog.  If you really like the sound of it I can then look at trying to expand it into a longer story and see what comes out of it all.

So if you fancy having a go leave a reply for me with your three words and I will try and get something back up here withing a couple of days or so.

Let’s get creative together!

Until next time folks, Stay Safe and Keep Smiling

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Creativity Journal

Creativity Journal

I am going to let you in on what I have been doing for the past couple of months that has kept me away from the blog in the past couple of months.  I have been keeping a creativity journal which means I am  writing every single day on a wide variety of subjects.

I am studying creative writing at the moment through university and I have been having a blast with it.   One of the things my course asks me to do is keep a writers journal.  A writers journal is a book of observations, ideas, random quotes and pretty much anything else that has interested me or has popped into my head for some reason.  It is a good exercise to get the creative juices flowing and it is also very therapeutic to empty my head of all of the things I would bottle up inside and obsess about for ages.

Ideas, Sharing and Blogging

So that got me thinking about my blog and what I could do to tie in both the things I have spoken about before and the creativity journal that I am keeping each day.  I thought I could share some of the things that I have been writing each day and let you tell me whether you like/dislike them and it also may give me an idea to try and write some short stories or hopefully a novel!

I also thought about having a day where I will take suggestions from you folks of 3 different objects or ideas and then I will write them into some kind of short story.  I reckon this would be a good challenge and it would get me into a good habit of writing and would also let me give you guys something that I have created just for you! I could try and use the few photography tips that I have been given to try and take some photos that tie in with the story that I have written as well.

Another idea buzzing around my head is to do a photography scavenger hunt, for those of you that blog, so we can share photos about our local areas and link up to promote each other.  I think it could be great fun and I hope you guys are on board with it as I would love to see some of the places that you visit in your local area.

Creativity Journal

Sunset over mountains taken from the plane

This doesn’t mean that I am going to be changing the blog completely to talk  about different subjects though, I am just hoping to include you all in some of the things that I like to do to relax when the pressure of my own pain and Pretzel’s disability get on top of me.

So what do you reckon?  Are you guys up for putting your toes into the pool of creativity with me and coming on a journey?  I hope so and I reckon we could have a good laugh along the way as well.

Until next time folks,  Stay Safe and Keep Smiling!

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Refreshed, energised and raring to go!

HEY THERE FOLKS!

Sorry for shouting but I just thought I might need to wake everyone up after a prolonged absence by me.

Things have calmed down a bit for me now and I am feeling refreshed, energised and I am ready to get going again with some new and exciting things I want to share with you all.  We had a lovely week in Malta which gave us some much needed rest and recuperation time and also gave us the chance to catch up with some good friends, old and new ones.  But down to business again from now on!

Firstly, I would like to report that my creative writing has been giving me a lot of ideas, a ton of pleasure and is really starting to get me excited to grab a pen and write again!  I have had ideas from absolutely anywhere and everywhere and it is like having a new pair of eyes put in my head.  I am looking at the world in a whole new way which has not only helped my creative writing but has also helped with my photography as well.  I have had a lot of fun with both of these before I went off o holiday for a week to the lovely, sunny island of Malta.

Before I went off on holiday I had a few photographs that I had taken for my course that I thought I would share with you because I really liked them and I would love to know what you think about them.  I don’t mind if it is good or bad because I am still learning and of course it is a subjective art form as well! So without further ado here we go 🙂

So what did you think?  Some of the shots I am not 100% happy with but I think it isn’t too bad for someone who used to just point and click.  I will be taking a lot more pictures in future because they really help fuel my writing as well.

I am hoping to start including some short stories and poetry things I am writing at the moment on the blog but I am still deciding on the best way to display them and whether they should be included in the blog or just put on a separate page of their own.

Well that is all from me for now but I hope you enjoyed the photos and there will be more updates regularly now that I am back on my feet and fighting fit again.

Until then Stay Safe and Keep Smiling

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Update on my whereabouts

Hey folks,  I just wanted to apologise for the lack of activity on the site for the past few weeks and I want to give you an update as to what has been going on in my life at the moment.

Firstly, I have not been very well and the pain side of things has been kicking my backside of late.  This had led the doctors to change my medication but to do that they have to reduce the one I am on before swapping across to the new one which is more powerful.  Lots of pain ridden days have been the ‘norm’ for me but thankfully it wont be for too much longer.

The second things is that I have been busy with some creative writing for my Open University course and also a Photography module (I am off there this morning) which will hopefully add some variation and depth to what I have been posting about on this site.  I am really enjoying the creative process and hopefully the things that I do will be interesting for you guys to look at and read as well.

Finally we had an update about Pretzel which knocked us for six a little bit so I will definitely be posting about that in the upcoming weeks when I can get my head around how it makes me feel and what it means for the future with us as well.  I hope that you can bear with me because I am planning on some big changes with the blog and also the layout/design (if I have the time to do it).  I do appreciate all of the support I have had through this blog and I don’t plan on abandoning it  anytime soon so please do stick around to see what happens.

So for now I will be busy writing and snapping away to make some (hopefully) cool and nice things for you all to see very soon.

Until then stay safe and keep smiling!

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Band Life and Late Night Reminiscing….Is it a good thing?

I had the usual insomnia problem again tonight but after having a really bad week I am not really surprised.  I have spent most of my ‘free’ time listening to music and trying to listen to a different band each day.  We managed to get some relief from our school holiday hell when Zanna’s mum came over and watched the kids for a couple of hours while we caught a movie.  Even that small amount of time was just enough to stop me from going insane with Pretzel and her constant squealing all day and night.  I haven’t even had the energy or brain power to post in the past couple of weeks at all.  We also received some information that was a bit of a shock about Pretzel’s condition which has left us a bit stunned and shaken so we are still coming to terms with what it may mean.  Music seems to help me to deal with a lot of things and I thought I might share some of my experiences with you.

Band Photo

Photograph by Shirlaine Forrest

The Band Member: An old incarnation of me

As I was sitting at my computer I decided to have a flick through my many music files and I came across some of the old music files that my old band recorded before I left and got a lot worse with my chronic pain.  I used to eat, live and breathe the band life and I was in love with it.  We once travelled from Newcastle to Colchester music festival and back in a single day which was around 5 1/2 hours just get there, we played our set and then turned around and drove back for 5 1/2 hours.  It was challenging but we all had a good laugh together and it is something I miss with all my heart.  It is only when listening to the tracks that we recorded that I realised that I have not been able to look at my Bass guitar or even pick it up to play since I became officially disabled.  I find it too hard to think about how I used to jump and bounce around a stage playing my guitar compared to the guy who can’t stand without being in extreme pain.  I almost sold my gear a little while ago but something inside me just couldn’t and I don’t know why.  Maybe something is telling me I might get back to playing again but then part of me says that I shouldn’t torture myself with it still being in my house unused.

The other sad thing I realised as well is that ever since leaving the band I have lost touch with the guys I used to spend so much time with.  I still have them as friends on Facebook but something always crops up to distract me every time that I think about getting back in touch with them.  I guess it is the price I have learned I have to pay as a disabled guy and a parent of a disabled child who spends so much time in a carers role.  It is that same problem of being ‘trapped’ in a life where socialising revolves around appointments for myself and my daughter and the limited contact that I can manage with people via the internet.  It is one of those things where I am not sure if it is me making excuses and hiding away from the world or if it is the world hiding itself away from me and the problems and difficulties I have in my life.Band Bass Playing

Is there a way back for me?

So now I am sitting with a lot of questions about my life once again.  I love my music and I love playing musical instruments but realistically is there any type of performing that I could do with my disability that lets me play the music I like?  I am not sure there is to be honest and it has me wondering if I should think about selling my equipment and stop torturing myself with a life I am not going to get back to?  Should I look at other musical outlets that are more achievable like singing instead?  I feel that losing music altogether is a step that I don’t want to take as it has been part of my life since I was 5 years old.  I miss going to the gigs, the feeling of joy once the gig was over and that buzz that surges through your body, energising it to the core.  I miss the rehearsal room, the comradery between the band members, the stories that we could tell about gigging and the pleasure of entertaining people.  I suppose most of all I miss the guys who were in the band with me and their families and friends who used to come down and see us at every gig.  They became like adopted family and friends to me and since my life became so hectic I lost touch with them too.  I am not sure whether trying to get in touch with everyone again is a good idea or not?  Any suggestions?

So as a treat here is a link to a couple of the tracks that I used to play on with the band Caplyn about 7 years ago now.  The band carried on under the same name and they have a new line up.  You can see them by visiting their website over at http://www.caplyn.co.uk

The songs that I played on in my time in the band are here:

Old Caplyn Myspace Account

 

So there you have it, a little more information about me and one of the things I used to / still do love to do in my spare time.  I hope you enjoyed the tracks and if you do get the chance to go and see the band Caplyn live, get yourself down because they are a great bunch of lads and you will have a great time.

Until next time folks, Stay Safe and Keep Smiling!

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My world: an outpouring to those who will listen…

Hey folks, sorry I haven’t done my regular posts this week but I have been in a very dark place in the world lately and I am struggling  in many different ways.

The state of the world we live in….

My binge eating disorder has been testing me so much over the past month it has drained a lot of my energy trying to keep on top of it and I exhausted almost all of my coping strategies to try and stop heading down a very steep slope again.  I am winning the battle up to now but I really could use those positive thoughts from you if you can spare them.

Zanna and I have been working so hard trying to get things done for our charity work and things seem to be going well.  We have been organising a Halloween Party, Christmas Party, Christmas Fair, Pantomime Tickets, looking for donations for raffle prizes and organising a sponsored ghost hunt.  I have been doing a sponsored weight loss and over the past 2 months I have lost 17 lbs which (if all gets collected) has raised around £230.

We were at an award ceremony this evening for my 11…ooops 12 year old daughter, Manga.  She was awarded the Headmaster’s award from her Primary School for her contributions to the school.  We could not have been more proud of her as she works so hard in circumstances that most kids would struggle with.  She does so much for her little sister, Pretzel, without so much as a word of complaint and she truly astounds me with what she is capable of.  I know that she is going to be an astounding young lady and excel at whatever she puts her mind to.  It was her birthday today as well which made the evening even more special for us and for her.

The world’s plan conspires against us….

Unfortunately, whatever power that drives this Earth that we live on decided we had been a little too happy and a little too complacent and hit us with a sucker punch today.  We had the results of an MRI that was done on Pretzel in February and the results shocked us back to reality.  It showed that she has parts of her brain missing and other parts that are underdeveloped.  There is also some parts which are over-sized which all adds up to a big mess of everything.  The thing is we were never told about these things when she had her first one done when she was 8 months old.  To say it took the wind out of us is a little bit of an understatement.

The world our family lives in……

From the beginning of her life, Pretzel has been a bit of a conundrum for the medical profession.  This is nothing that a lot of my ‘family’ over at SWAN UK have not heard before as it seems to be a common theme among our children.  We just about managed to deal with the fact that she was resuscitated at birth after a traumatic labour for Zanna.  We just about coped with the fact that she was admitted 2 hours after being discharged from maternity with low blood sugars and low Oxygen in her blood.  We even just about managed to cope with the West Syndrome (Infantile Spasms) which is a rare form of seizure in children.  It took many months to get her seizures under control and at a level where she could function day-to-day but by God we got there.  We even managed to come to terms with the Grand Mal seizures she had that almost took her life on more than one occasion.

Pretzel has worked so hard along with us to try and overcome physical deformities, mental obstacles and so many other factors that no parent would want their child to go through.  Developmentally she is still at the 18 month old level in a 9 year old’s body but she can walk around the house on her own, she can play with the toys that she wants, she has a stubborn determination to do what she wants, when she wants and she can hum ‘twinkle, twinkle’ like a champion.  We are so proud of her for being able to do even that.  We always held an inner hope that at some point in the future she would be at a level where she may be able to do things for herself a little more but after today’s news that has been snatched away from us and it has been snatched away from her too.  I feel cheated……..not for me, for her.  She deserves so much more than what she has.  She has fought everything that this life has thrown at her and excelled through the worst of circumstances, but yet I feel saddened by the many things she will not get to experience.

She has been robbed of the chance to experience the joys of having a loving relationship either with us, her family, or with another person.  She will never have children of her own.  She won’t ever get to drive a car, go to work or have a social life that other teenagers enjoy. I think some parents take for granted that their child will walk, talk, grow and experience the world without a second thought that things could be so very different.  I know this because I was the same with my other two daughters but Pretzel changed all of that.  She has fought and struggled to do everything that she has achieved so far and it has taken hundreds of hours of therapy from Zanna, myself, Manga, Jaffa and the many teams of support staff that have known her.  All of that work has managed to get her to the very basic level that she is at today.

The world of a father in pain……

So here I sit, like a knife has been wedged into my heart, bleeding and in pain trying to cope with it the only way I now know how………writing it down to get a message across about what my family lives each day.  If I had the chance I would trade my existence for my daughter to have a life where she could experience the beauty of this world and some of the people in it.  I wouldn’t hesitate to trade places if I thought she would be able to achieve on a level that everyone else does because her determination and perseverance through some of the toughest situations means that she would do something really great.  I won’t get that chance though so we have to go on the only way we know how.  We pick ourselves up off the floor, slap on some sticky plasters and bandages and prepare to head back out into the blinding, swirling storm of uncertainty.  We live our lives day by day wondering what life will throw at us next.  Will it be good? Will it be bad? Will we get through it and tough out the rough times?  I don’t know what the answer is to that but I do know one thing……  We will go down fighting as one hell of a strong family that nothing could ever tear apart.

I ask of you one thing though folks, please, please don’t ever take anything in your life for granted.  Live your life being as happy and content as you possibly can be. Appreciate everything that is truly wonderful in the world and sped your life surrounded by those whom you love and who make you happy.

That is all I can deal with writing for now folks, sorry if it did put you on a downer but it had to come out of my head and my heart to give me the room to grow in strength and determination to carry on once more.

Until next time folks, Stay Safe and Keep Smiling!

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SWAN meet up: New friends to be made?….I hope so!

Today is the big day for us.  This is the day that the members of SWAN UK that live in the North East are getting together for the first time ever.  There have been a number of SWAN families getting together around the country and it has been a great success so far.  Unfortunately for a few families in the North East it was a little too far/expensive to travel to the big one so we decided to have our own little outing instead!

Swan Meet Up: Hesitation and Excitement

I am feeling a little apprehensive about the meeting though as much as I am excited at the same time.  I guess it is a side effect of being so socially isolated for such a long time that you don’t really know what to expect when you finally do put yourself out there for everyone to see.  It is a daunting experience but at the same time I know that the people I am meeting up with are also in the same situation and will be feeling the same nerves as well.

I guess there are some nerves there about Pretzel as well though because she has been getting a lot more violent recently and it is always a worry that she may lash out and hurt one of the other children or that one of her meltdowns may just spark off everyone else’s child as well.  I am also a bit nervous as well because I am still battling my binge eating demons and they have been resurfacing recently causing me to feel a lot more insecure than normal and to be a lot more body conscious at the same time. Don’t get me wrong, I am doing fantastically well in losing 50lbs since January this year and also finding my blood sugar levels have returned to ‘normal’ because of my weight loss.  That was a big surprise at my check up the other day but a very pleasant one!

SWAN Meet Up: New friends and a new social life?

I am hoping that this meeting of all of us in the North East is going to be one of many more in the future.  While I know that we all have different pressures and different issues to deal with in our lives, I do hope that we will find some time to just get together for a cup of coffee and a chat every now and then.  Actual human contact with people who understand what we are saying about Pretzel is so rare but when it does happen it can set us up for months just knowing that there are people who DO understand and who ARE interested in what we are saying.  I am not trying to take anything away from the rest of the wonderful SWAN family on the Facebook group but I am sure they would agree that actual conversation in person is far better than some text on a screen.

SWAN UK: Lauren Roberts

Finally I want to acknowledge the co-ordinator for SWAN UK, Lauren Roberts.  She does an enormous amount of work behind the scenes for SWAN UK and she is always on the go.  She has done a huge amount of work for SWAN UK and sometimes it is easy to forget just how much she does do.  The community that has grown around the Facebook page is one that is so strong because of her and the fact that she always stays involved with everybody and is always excited to see what is going on in the SWAN world.  I had the fortune to meet with Lauren at the Centre for Life in Newcastle (although it nearly didn’t happen because of the floods!) when we were speaking at the GenRes conference there.  She is a sweet and lovely person and so were the other SWAN mums that we met that day as well.  Lauren is currently touring around speaking to different groups all over the country to promote SWAN UK and the work that it does.  She not only liaises with families but she also acts as the go-between from the genetic testing clinics and the families from SWAN that use them.  So, here is to you Lauren, you do a fantastic job and I hope you finally have some of the recognition you deserve for it.  Thank you, even though I know you will hate me for bringing attention to you!

So at 1pm today I will be meeting up with all the folks I have been chatting to for may months now and hopefully, our kids will all be having a wonderful time together.  If the families don’t mind I will share some of the photos on my blog in the upcoming week so you can all see the fun times we will have!

Until then, Stay Safe and Keep Smiling! 

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