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.

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.

Photo by Suzanne Addison

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.

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!

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!

Related articles

• SWAN UK children get Gold Medals for Olympic feats (keithaddison.co.uk)
• A Family Doctor’s Tale – BINGE EATING DISORDERS (kennethkee.info)
• My hidden illness: 30 things you may not know (keithaddison.co.uk)
• Binge eating: A disorder that affects men and women alike (wjla.com)
• Parents with a special needs child (braininjuryselfrehabilitation.com)

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! 

Related articles

• The first ever SWAN UK Family Funday! (swanuk.wordpress.com)
• ‘SWANderful’ to see SWAN in the papers (swanuk.wordpress.com)
• Superwoman: A dedication (keithaddison.co.uk)
• Another SWAN star in the news! (swanuk.wordpress.com)
• Grayson’s Great Funday! (swanuk.wordpress.com)
• A SWAN Song (rhubblog.com)
• New documentary on undiagnosed genetic conditions (swanuk.wordpress.com)
• SWAN UK children get Gold Medals for Olympic feats (keithaddison.co.uk)

Superwoman: A dedication

‘Superwoman’ by the amazing Alicia Keys is the song I would like to use for today’s Wordsmith Wednesday.  Alicia Keys is one of the artists that I really admire for being able to write such beautiful songs and perform them with such emotion.  I particularly like this song because it reminds me of two things that are close to my heart.  The first is my beautiful, hardworking and doting wife.  She is truly a superwoman for what she does.  The second is the lovely ladies that I have met through SWAN UK.  These ladies who are mothers, grandmothers, aunts and sisters, have to go through so much and deal with so many things that a lot of people couldn’t even comprehend.

Superwoman is Fighting the Fight….

For all the mothers fighting
For better days to come

When you have a child with such profound difficulties as a SWAN (Syndromes Without A Name) child does you need to fight every single day for absolutely everything.  Because you have no diagnosis, nobody is willing to listen or help you straight away.  They want you to justify absolutely everything that you ask for, no matter what that is, and often you are looked down upon as trying to ‘scam’ the system.  This results in having to go to numerous different sources and collect information to pass on to get the help that other conditions often receive with no questions asked.  The ladies who care for SWAN children fight every single day because they have to first ensure their child is cared for and catered for in the correct way and then start to deal with the mountain of paperwork, telephone calls and letter writing that has to be done to get their child some help and recognition in the system.

When the going gets tough……

Even when I’m a mess
I still put on a vest
With an S on my chest

As you can imagine these ladies get exhausted physically, emotionally and mentally from having to deal with so much pressure from every direction but they can’t afford to stop for a rest to recuperate because something always needs to be done.  Instead they pick themselves up from the ground, dust themselves off and get right back to the slog of doing what needs to be done.  I have witnessed some of the ladies there being physically injured and badly needing recuperation time to recover, yet, they still put the effort in and deal with the complex difficulties that their children have.  There is no opportunity to shirk that responsibility as it is the single most important thing to them.

Superwoman SWANS together can fly so high…..

When I’m breaking down
And I can’t be found
And I start to get weak
Cause no one knows
Me underneath these clothes
But I can fly
We can fly, Oh

I have seen these ladies all, at one point or another, reach the very limit of their capability to cope with their situation and they need to talk things out or vent their frustrations and they do so on the SWAN UK Facebook group.  A wonderful thing then happens where each of them band together and lift the spirits of the ‘injured’ SWAN lady and offer their support, kind thoughts and well wishes until she feels ready to ‘fly’ once more on her own.  The fantastic thing is that these ladies are never alone, that goes for the SWAN families as well, because once they make themselves known they are just a click, call or text message away from a countrywide support group.  It is truly an amazing thing to witness and it often has me speechless with how affectionate and caring every one of them can be.

Superwoman saves the day….

Cause I am a Superwoman
Yes I am
Yes she is

These ladies truly deserve the title of ‘Superwoman’ and they should get the recognition and appreciation that they deserve.  Sadly they probably won’t get the attention, thanks and praise they deserve but that will not deter them, they will still ‘Put on that Vest with an S on the chest‘ and carry on regardless because they have to.  They are carers, admin workers, specialists in medical care, advocates, charity workers, event planners and fundraisers.  Most of all though they are truly amazing people who are made of the strongest of stuff and will not be broken.

Well there you go, that is my take on ‘Superwoman’ by the fantastic Alicia Keys.  I hope that you enjoyed it but I would also like to hear your tales of any ‘Superwomen’ that you may know who deal with a lot of things that they never complain about and most of us would shy away from.  Are you fortunate enough to know someone like that?  Do you know someone who deserves recognition for dealing with a tough situation?  Tell us all about it, give them some praise and recognition and let the world know how super they really are.

Until next time folks, Stay Safe and Keep Smiling!

Related articles

• Superwoman Syndrome! Do you suffer with it?! (crescenttherapyandassessment.wordpress.com)
• Rita Ora looks up to Beyonce as ‘superwoman’ for juggling career and motherhood (standard.co.uk)
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• “An Average Woman in a Superwoman World” Launches New Website (prweb.com)

New ideas and a fresh outlook….

Hey folks, I am back with a new outlook for the week, the year and for my whole life!  In fact this post is going to be the first of many that I will be linking up with another blogger called Melissa over at The Bright Side blog.  She hosts a series called LML (Love my Life) on a Monday and you can read about it here.

First I want to say sorry for the lack of posts last week but things have been absolutely manic for us with the kids being on their school holidays.  Pretzel decided she would scream at us all day, every day because she has been taken out of her routine, Manga has been getting bored because she has had nothing to do and my sleeping and pain have been giving me a right battering as well.  All of this together does not add up to a happy, energetic Keith!

 Time for a new beginning

Life isn’t about finding yourself. Life is about creating yourself. -George Bernard Shaw

 This quote from George Bernard Shaw is one that I will look to for inspiration in the future when I am feeling stuck in a rut or when I need to try something new in order to change the direction in which my life is heading.  Too many times in my life I have talked about finding out who I am and what I want and I have even written about it on this blog.  Then I was reading a book that I bought recently that had this quote in it and it made me rethink the strategy I was using to try and change my life for the better.  Instead of looking backwards at the things that I used to dream about and where I wanted to be when I was younger, I have decided to take a different standpoint now and create a ‘new’ me.

You will never win if you never begin. -Helen Rowland

There isn’t just a new beginning for me at this moment in time though, my whole family is starting new things this month.  Pretzel will be getting a new one-to-one worker who will be taking her out on small trips during the week to give us a little bit more free time to do things for ourselves.  This is something we have been looking forward to for a while now because it means we can spend a little more time and attention on Manga and also gives us a chance to spend a little time with each other.  We may even get chance to have a regular ‘date night’!

Manga is starting secondary school in the next couple of days as well which she is so excited about.  She absolutely loves school and hates the fact that she has to have school holidays, especially when they are as long as this one in the summer.  We are so proud of her because she got her results back from her SAT tests and she aced all of them, even getting a grade for Maths so high that they don’t normally hand it out! A new school for her is an exciting prospect, but I have to admit it is a double edged sword for me because my little girl is growing up and it is hard to ‘let go’ of my little girl and embrace the young woman who is now in my life.  I think it is especially as the difference between her development and Pretzel’s development is so markedly different.  It is hard not to compare each of my daughters with each other but it is something I am going to have to learn to adjust and adapt to.

Jaffa is starting 6th form college in a couple of weeks to study Information Technology, Child Development and Health Studies.  She has said that she wants to work with children like Pretzel and I think she will be fantastic at it as well.  She dotes on her little sister when she comes to visit and she has a very calm way of dealing with things.  She also got fantastic results with her GCSE exams and had some very high marks as well.  It must be something in the water that is making them all so smart!

And now we move on to myself and Zanna.  We have got some new courses that we are going to be taking to give ourselves a break away from the house and, hopefully, might lead to some new and exciting things for us.  We are both starting a photography course which is something we have wanted to do for a while.  We often see other families with beautiful photographs of places that they have visited but we always end up with blurred, fuzzy pictures.  The plan is to do this course and then go crazy taking pictures of anything and everything so we can start using them for this blog and other things we are planning for the future.  After we have finished that course we are going to be going on a creative writing short course so that we can learn more about how to create stories and characters.  We are planning to write some books for children and possibly even a series of books giving information about life as a parent of a SWAN child with an undiagnosed genetic condition.  On top of that I am continuing my studies with the Open University and I have changed my degree to study creative writing as well.  It is something that has become my passion and, as well as writing this blog, has taken up the majority of my time over the past few months.  I am busy working on some ideas for some short stories, poetry and I am also looking into doing more research on an idea that I have for a non-fiction book as well.  I have decided that I will write under a pen name though as I don’t want to influence people about myself, my family or my friends when they read anything that I write.  I may decide at a later date that I want to reveal what my pen name is but for the meantime I will be keeping it under wraps.

So there you have it, those are our new ideas and our fresh outlook to the remainder of this year and beyond but I want to know what you have planned for the rest of the year and beyond as well.  Are you starting any new projects? Have you decided to have a new outlook on life?  What is motivating you to go forward into the winter months?  Drop me a message in the comment section and let me know.

So until next time folks, Stay Safe and Keep Smiling!

Related articles

• Quote of the Week: Creating Yourself (cultofajracewood.wordpress.com)
• Life changes, are they important? (keithaddison.co.uk)
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