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)

Getting Sentimental:10 things I miss, what are yours?

Getting Sentimental

I was getting sentimental today as it is my 13th Anniversary of being married to the wonderful woman that is my wife.  We have been together for 15 years in total which absolutely scares the pants off me.  It is only when certain things like these types of celebration come up that I realise just how much time is passing by.  My eldest daughter is 17 this year and starting 6th form, my middle daughter is 12 this year and starting secondary school and my little SWAN is 9 years old and growing to be rather huge to what I ever remember.

I think the biggest shock though is when I look at some of the ‘music’ on TV and I don’t recognise any of the songs or the pre-pubescent ‘singers’ who are gyrating around on the stage in virtually no clothing (if they are female) or talking about what they want to do to the half-naked girls on stage if they are male.  So I have to ask this question……

WHEN DID I GET OLD?

Me today in reality

I used to sit and think that my parents where old and stuffy when they would criticise my clothes or music and it is something I have found I am doing on an ever increasing basis recently.  Then it made me realise there are a lot of other things I miss from when I was younger so I thought I would share them with you:

1. Common decency and manners for all people – Why is it no one gives anyone else consideration these days?
2. Being able to run about playing football or rugby all day – Now I struggle to have the energy to get out of bed!
3. Home cooked food in cafés and restaurants – I remember being able to get things like mince and dumplings, home cooked pies etc.  Now it is all about speed and cost and I think quality has decreased as a consequence.
4. Sherbet Shandy Lollies – These were similar to Edinburgh rock on a stick and came in lemon or strawberry flavour – the company that made them went out of business.
5. Cheaper prices for….well everything – It seems that no matter where you go you are charged extortionately for everything.
6. Dirty Weekends with the Mrs – Definitely no chance of these with kids!!!!!!!
7. Clubbing in Rock clubs – When the Mayfair in the centre of Newcastle got levelled to make a cinema the rock scene pretty much died for me.
8. Drinking Alcohol….specifically Jack Daniels – I am a fanatic.  No really I collect all sorts of Jack Daniels memorabilia including bottles and because of the medication I can’t any more……I still have 2 bottles in my cupboard.
9. Florida – three of the best holidays of my life so far were to Florida and it was worth going as I got to go with my extended family including my grandmother  as well as my 3 kids.  We had so much fun and never wanted to leave.  It was like home.
10. My (step)mum Joyce – I hate calling her stepmum as she was a mother to me in every way except biologically.  She was my best friend and taught me an awful lot about morals, manners and how to be a better man.  I miss her talks with me about the world and setting it to rights and I really miss her ‘Joycey’ measures of alcohol which were, in her mind, just a single shot but in reality were more like a treble or quadruple!!!  Great when it was Jack Daniels though!

How I feel today LOL

 

So that is my little list of things I miss, what would be on your list of people/places/things you miss from being younger than you are today?

Thanks again for reading folks and hopefully normal service will be resumed once I finish celebrating with my wife.

Until then Stay safe and keep smiling!

Minimal Talk Monday

Hi again folks, this is day 16 of the Ultimate Blog Challenge

Mime Monday is because I feel like I have been hit by a train today.  I haven’t slept very well for ages now, my medications are playing havoc with my insides and my brain and it isn’t very nice so I thought I would share a few things with you via a different method instead!

These are some of my favourite family photos that give an insight into the fun and games that we have together.

Sorry this was a short one but hopefully tomorrow I will be back on track.

Until then stay safe and keep smiling!

Are You Normal or Are You Special?

Hi again folks, this is day 15 of the Ultimate Blog Challenge and we are about half way through!

I must admit to feeling a little bit down and a bit saddened this morning as I sat awake (….again) at 3am pondering the world and what it had in store for children such as my daughter.When I look at her I feel all of the joy and pride that a father should when he looks at his beautiful girl and that killer smile would melt the heart of anyone but (there always seems to be a but…) I can’t help but sometimes think about her future, how she sees the world and how the world sees her. There are some really nasty people in this world who would take advantage of someone with special needs intentionally and there are also those ignorant people who make disgustingly discriminatory comments who, in my humble opinion, lower than a snakes’ belly.
I want to protect her from all of the comments like that and I want to prevent her from hearing the way people can be so cutting just because something is ‘different’. What I would ask though is “What is ‘normal’? I don’t think that is a question that can be answered really because nothing is ‘normal’. Every individual has fingerprints that are unique, your DNA is unique, your personality and how you travel through life experiences and evaluate them is unique to you. If so much of us is unique then how can we define what is ‘normal’?

I have heard so many people in various situations refer to my daughter as ‘Not like a normal child’ or ‘She isn’t like everybody else’ and it has really started to get me thinking but also it gets me quite annoyed at the same time. When my first daughter was born (my wife’s second daughter), I was a brand new parent and I had never experienced anything like what was to come. There was the crying, rarely sleeping, pooping, peeing milk monster that took over our house and drove me almost insane with the amount of times I was up through the night. Then there was the inquisitive, destruction tornado, tantrum taking toddler that followed on before becoming the even more inquisitive, book reading, highly talkative, education hungry young girl who would ask me to write sums for her while sitting at the dining table every evening. Now I have the hormonal, stroppy, highly inquisitive, education hungry ‘tween’ who is just about to start secondary school. It all sounds pretty much the usual story so far doesn’t it? Now what if I told you that same daughter started speaking in full sentences before she was 2 years old, knew all of her colours, numbers , basic addition and basic subtraction by the age of 3, read story books before starting primary school at the age of 4? Would you then say that she was ‘normal’ or highly intelligent for her age? She has just had her school results back for this year and has achieved scores well above ‘average’ for her age level and for that I am pleased and proud but it does have me thinking ‘Why is it that she is seen as ‘normal’ but my daughter with special needs is not?’
How about if I told you that I was informed that my youngest daughter would never walk, talk, or feed herself and would live her life in a vegetative state in a wheelchair for the rest of her life? (I was actually told this as well) However, she has favourite TV programmes, walks (and runs) around the house and school, hums tunes and can understand single words at times despite her many difficulties. I would say that her development compared to what was expected is not ‘normal’ but instead actually ‘exceptional’. It is a matter of perspective as to what ‘normality’ is but it still doesn’t stop those thoughts creeping into my head……

Will my daughter ever have a relationship? Will she ever learn to speak? Will she ever be able to live with minimal assistance? Will she ever experience the joys of parties, birthdays, weddings or anniversaries? Will my wife and I be able to support her into our old age when normally we wouldn’t need to? What happens to her after we have gone?

All of these things seem like worries that affect most parents of special needs kids and every parent wants to try to do the best that they can for their child. Often it is the little things that can mean the most to us which, in it’s own little way, makes us even more fortunate and blessed than the ‘normal’ parents. I remember vividly the very first time my daughter sat unaided for the first time. She did it a lot later than other children do but she did it despite everything expected of her. I can remember vividly the first time she stood up on her feet, again a lot later than others, but SHE DID IT! She defied the odds and proved that no matter what happened she was going to prove us all wrong and fight to get where she wanted to be. Every step has been a struggle but I can assure you she has been determined to make each and every one. So the next time I say somebody refer to her as ‘Not like a ‘normal’ child’ or ‘Different to everyone else’ I will enthusiastically tell them that they are right she is not ‘normal’ but she is ‘EXCEPTIONAL’ and I hope that she, along with my other 2 girls, go through their lives being just as exceptional as they are right now.

My eldest daughter is leaving school this year and had her prom recently and it got me thinking about my SWAN daughter and whether she would have the same opportunity to have one. I had resigned myself to the fact that it was highly unlikely that the children in her class would have the chance of the same experience until I saw something on Youtube. I want to leave you with this video which just made my day and has inspired me to try and make the same happen for children in my daughter’s school and, who knows, maybe other schools in the area to pay attention and organise something similar.

This cheered me up and made me realise that there are some genuinely nice people in the world and there is hope yet for children like my daughter to be recognised not for ‘special needs’ but for being just plain old ‘SPECIAL’!

 

Until Next time Folks, Stay Safe and keep smiling!

How do you get back to yourself?

Hello once again folks, Day 14 of the Ultimate Blog Challenge.

Wow 2 weeks in and I have managed to find some fantastic people on this world wide web, post every single day to my blog, buy a website domain/hosting, learn more about WordPress plugins and stay sane through all of it!

I found myself talking to some wonderful people over at the Bloggers Unite tribe I am a member of on WANATribe about starting to write some other material that is not necessarily about special need parenting and subjects similar to that like I do with this blog.  Don’t get me wrong I LOVE this blog and all of the readers that I have and it has helped me grow so much in the past month or so that I have been writing it.  I just feel that as I am enjoying writing so much that I should branch out into some other things that I am really passionate about as well.   But then I realised……..what am I actually passionate about any more? I know that sounds a little strange but because every day is so tied up in managing my own pain and caring for my disabled daughter that I have forgotten what makes me…..well…..ME.  I used to have so many things I was passionate about and I used to be involved in so many things in so many different areas but it all stopped either when my daughter was born or I got really bad with the pain.
I guess this is part of the journey I am on and part of the reason this blog has been helping me.  I am slowly but surely realising my own worth as a human being and an individual.  After suffering so much abuse and self-hating about my weight, depression and coping with the binge eating I have piece by piece lost the parts of myself that made me have an identity and feel I had something to give to the world around me.

There are a few things and people who have slowly helped me start to realise this and it is because of them that I feel I need to take a big leap back into my own identity and start being a little selfish and start doing things for me and the man I want to be (there will be a big shout out at the end of this post I warn you).  I don’t want to get up in the morning any more and look in the mirror at this stranger’s face that looks like me but isn’t a true representation of the real me.  I don’t know if this is just something that has happened to me alone or not but I can’t help but think that there are some other people out there who must look in the mirror and see somebody different staring back.

Where did my dreams and aspirations go?  Where did my motivation go? Where did my passion for life go?  Why have I been so content to let life pass me by instead of jumping in and experiencing life? Why have I passed up on opportunities because I didn’t have the confidence to step up to the plate and realise my worth, opinion and experiences are valuable? 

These are all questions I am now asking myself because I don’t want my life to reach it’s later stages and be full of regrets, wishes unfulfilled and feeling like I hadn’t participated in life in general after all it isn’t a dress rehearsal!  I am going to make a change in my life from today, this is it:

I promise to be myself, I promise to start recognising my self-worth, I promise to reignite my passion, I promise to start living life instead of letting it pass me by and I promise to be a happier, confident, meaningful part of the world around me and give back to those who need it.  I promise this in front of all of you people who are reading this and those of you who think about me even for a flashing moment during your day.

I used to be so involved in amateur dramatics, I used to play in a band, I used to sing ALL of the time, I used to listen to music ALL day,  I used to wood carve a lot, I love watching movies, I love poetry and reading, I loved playing computer games, I loved watching NFL and Rugby,  I loved talking to people and sharing stories/jokes and I used to love cooking A LOT (more than I did eating it!).
All of these things I used to love doing but I have also found out a few things that I have started doing that I really enjoy doing now such as fundraising for charity, writing my blog/stories/poetry (anything really!)  and learning about all sorts of things (I seem to like to learn about virtually anything as well).
Then there are a few things I would love to do but have never had the confidence, or I have lost the confidence, to do such as learning to dance, putting my singing out into the world for people to hear, writing things to put out into the world for people to read,  building my own reviewing website/blog to give honest reviews on different products and cooking a meal for people again.

Looking at these things there are lots of ways for me to start looking at finding myself again but I would love to have as many of those who have helped me along the way on board with my journey so I plan to write about them as I go.  Is this something you folks would be interested in reading as well or is it something I should write about in a different place?  How would you go about finding yourself again?  Do you think you would approach it in the same way as I plan to do?

And finally to the shout out part (I don’t mind if you skip this) as I really would like to thank:

My wife, daughters and family for being there when I really needed their strength and support;
All of the folks at SWAN UK who make the journey with a daughter who has an undiagnosed genetic condition so much easier to bear;
Karen, Dan, Andrew, Tina, Faith, and Duane for being excellent friends and listening to the gripes and groans and generally being awesome mates through the bad times and the good;
@Sarahmckenzie80 for making me laugh so many morning on Twitter when I have felt like I have been hit with a steamroller,
@HumanInRecovery and @Athenabrady for your kind thoughts, support and general sweet natures that have helped build me up;
All of the folks at WANATribe who have supported me and offered me help in building my confidence as a writer and blogger;
All of the folks participating in the Ultimate Blog Challenge who have helped my readers grow and offered such insightful blogs to read;
To anyone else I forgotten to mention, if you think you should have been on this list you are probably right and every little thing you have done contributes in some way to my life and for that I am truly thankful;
Finally A BIG HUGE THANK YOU to all of you readers who have contributed to my first steps to becoming my own person again, you will never know how much the comments, support and thoughts have helped me realise I need to begin a new journey and I hope you will continue to support me along the way.

Until my next post stay safe and keep smiling!

9 things that siblings of special needs children may think or feel

Hi again folks, this is day 12 of the Ultimate Blog Challenge.

Hi folks,  hope you are enjoying the new web home of Sleepless in Newcastle and you are happy with the way everything looks.  If you do think something could do with a change then let me know!

Anyway on to our topic for today:

9 things that siblings of special needs children may think or feel about their situation:

Sibling LoveErnst Vikne / Foter

 

1. Their own good health makes them feel guilty or ‘lucky’
2. Afraid to talk to parents about fears in case they make them stressed or ‘hassled’
3. Worried about what the future holds for their sibling
4. They need to help with everything / nothing just to get your attention
5. They can’t ask for things or ‘burden’ their parents with anything
6. Lonely, neglected or jealous about the extra attention that parents may give their special needs sibling
7. Embarrassment to have friends over to stay/play because of their special needs sibling
8. Wish that they had problems as well to get more of your attention
9. Worry that they may ‘catch’ what their sibling has got

 

Family fun timesCamp ASCCA / Foter

 

I know that through various stages we have been through pretty much all of these stages and it is extremely difficult to deal with on top of everything else that you have to do as a parent of a child with special needs.  We have to remember though that our other children deserve just as much encouragement and effort as our special needs child.  It is a tough time whenever any one of these points rears it’s ugly head but the strength of special needs families is often enough to overcome anything that life throws at us.  So in keeping with that list here are some of the ways in which we have found to solve the problems:

1. Work through an explain to the sibling what the problems are with their sibling in an age appropriate manner.
2. Remember to listen as well as to talk about things.  Quite often we, as special parents, spend too much time talking and yelling at clinicians / service providers that we forget to hear what our children are saying.
3. Assure your child that everything they do for their special sibling means that they have the best possible love and the best possible future they could hope for.
4. Explain that as a family you have overcome so many difficulties already that nothing life throws at you will change the love and care that you give each other
5. As parents, remember that special time set aside for a sibling can be something as simple as getting them involved with cooking in the kitchen or a trip to the local shop as long as your attention is focussed solely upon them.
6. Introduce friends of your sibling to your special needs child at an early age and encourage them to come over as often as possible, that way they become accustomed to the situation and will not be fussed by anything.  Also remember it is never too late to start this as a friend worth having will be understanding and supportive.
7. If your area has access, a young carer group can offer a place of understanding and fun activities that can be a distraction and social outlet for some of the worries affecting the sibling.
8. Write your sibling a note, letter or take a funny photograph to slip in their bag,pocket or lunchbox to let them know that you are thinking about them.

It is vitally important to remember that the siblings of a special needs child are going to be the person that is going to be around long after you, as a parent, are gone.  They need to feel confident that they can care for their brother or sister in the same way that you have done as parents after you no longer can.

Ultimately the more support you offer each other as a family the better off you and your children’s futures will be.

So the question I ask is what problems have you encountered with siblings and how have you dealt with them?

Until next time, stay safe folks!

What do you do with Family Time?

Hello again folks, This is post 2 of the Ultimate Blog Challenge

In this post I wanted to share with you what our family does with our spare time.  We are all creative at heart and we all love to make things for friends and family members to enjoy.  My wife’s particular hobby is Jewellery making.  She has a real talent for it in my opinion and whenever she makes a piece I am always blown away by the quality of it and the artistic flair of the design.  She doesn’t think that they are all that good but she makes them as presents for family members and friends but she has also sold a few pieces for charity.  Here are a few of the items she has made so far:

I think that they are pretty good wouldn’t you agree?  I would welcome any comments that you have on them.

My own hobby is woodcarving.  I had never even picked up a knife, chisel or gouge up until about a year ago when I decided I needed something to help me wind down and relax.  Fortunately, I have a lovely wife who allowed me to buy a full set of gouges and tools (they weren’t cheap) and I got cracking away at making all sorts of things.  I also have a crisis of confidence when it comes to the carvings so I never think they are all that good either.  I have a few here for you to look at:

Again any comments that you would like to make about them would be greatly appreciated.  I have only made things for friends and family so far but I would like to think that eventually I would get good enough to maybe sell a few pieces for charity.

Finally we move on to my daughter who is probably the most creative out of all of us.  She is always writing plays, poems, stories, scripts etc.  And she loves to make models and things like that.  She is really good and it is quite surprising what she can come up with from virtually nothing.  I have a picture here of one of the models she made for Easter with a sports theme :

Skateboarding, Parachuting and Abseiling were the sports we allowed her to include but believe me she wanted to use about 12 eggs!!!!!

Her other favourite things is to create animations and to create stories around these animations.   She also draws quite a lot and one of her drawings that she did was in a programme called Scratch and you can see it here

She drew it all using a mouse and the computer which I think is amazing as I certainly couldn’t do it.  She spends months at a time working on every little detail until she gets it just right.  If you were wanting to see some of her animation work you can look at it here

So as you can see we are definitely a creative bunch whether it is good or bad we enjoy doing it and have a lot of fun.

So what do you and your family do to relax and have fun?

Until Next time Stay Safe!

Caring for a Special Needs Family

Hello again folks!

Well what a dramatic past day it was in my home city of Newcastle!  

We had rain, floods, property, road and pavement damage. There was massive disruption to public transport, emergency services and power all over the city.  To see some of the spectacular images captured you can go here 

I wanted to take the opportunity in this post to talk about a group that has become a major part of my life and also provided me with a group of friends who are as close to me now as family.  That is what SWAN UK has become a big, strong family but to tell you about them I want to go back a little first.

When my youngest daughter was born with her special needs we had to go through a long process of medical testing, genetic testing and discovery of how we were going to change and adapt to looking after a baby who was ‘different’ to how our other children had been.  Little did we know that this would involve fighting tooth and nail for everything, researching so many medical terms and filling out so many forms and repeating ourselves that it would make anyone insane.  Along with this comes a whole set of things that affect families of children like ours that other people find hard to appreciate.

Firstly there is the slow realisation that your child will not do a lot of things that other children will do.  This is a double edged sword because at the time of first being told you go through a grievance for the things your child has ‘lost’.  With hindsight, this is probably one of those times where families need support the most because it is a time of tears, utter devastation and hopelessness.  As a family we felt so alone and by alone I mean that we had no family who could understand what we were going through, no friends who had been in a similar situation and no other families that we had been given to talk to by the medical teams who dealt with us through that time.  The isolation was soul destroying and led all of us to sink into a dark place of feeling like we were the only people in the world who were going through this tough time.  That is when we turned to the internet.

(photo credit Konstantin Leonov)

We searched and searched for answers.  Answers about tests that were being done, questions being asked and for any kind of support group that would let us connect with others just to talk.  It sounds like such a simple thing but we couldn’t talk to anyone about how we felt, what our fears were and what to expect for the future.  Friends slowly started to drift away because they didn’t know what to say or how to act around my daughter, family struggled to understand and either said ‘Don’t worry, they will get better’ or ‘I just don’t know how you cope’.  They couldn’t understand or comprehend what we were going through and I know in their own way they were trying to help but it only made us either feel worse or even more alone.  It became a scenario where our lives revolved around medical staff, hospitals, GP’s and filling out forms.  We all stopped spending time as a family because we simply didn’t have much time left.  I didn’t have time for a social life or even time to spend with my wife which meant we felt slightly more distant from each other and like we were drifting apart. Adding to all of this we were getting around 1-2 hours sleep per night as our daughter was either having seizures or would not sleep.  By feeling alone, I mean totally alone, as individuals and as a family unit.

The saving grace was my stepmum, Joyce.  I hate calling her my stepmum as she was like a mother and did everything for me.  I used to visit her at least twice a week and just sit and talk over a couple of cups of coffee.  She was great at listening and I could vent to her about everything, getting advice for certain things and soothing, calming talks at other times. She would do anything for any of her grandchildren and her first thought when she spoke to me was of my daughters and how they were doing and what they had been up to.  It was because of her that I managed to get in touch with a group called SWAN after she had seen a feature on TV about a group for people without a diagnosis.

SWAN was a group that had been set up by a grandmother who had a granddaughter with a  Syndrome Without A Name.  We joined the forum thinking that we couldn’t believe our luck as there seemed to be a place for us with families that had no diagnosis and were travelling the same route as we were.  We felt overjoyed…..until we looked at the forums and it was filled with post after post of people asking if other children had similar symptoms as their child.  Hundreds of posts one after the other with various families reaching out to get information that might give an insight into getting some answers.  It was too much for us to take and we left the site feeling it was not doing anything that would help us personally. I want to say at this point that it wasn’t the fault of anyone involved with the original SWAN site but it was the place that we, as a family, were in on our special journey that meant we weren’t strong enough to deal with so many people asking questions.

Over the next few years we became recluses in our home.  We had no friends left to go and visit, we didn’t have time to commit to any sort of group or activity so we again turned to the internet and we started to play online roleplay games, in particular World of Warcraft.  This was our outlet. When the day was done and the kids were in bed we would log on and play for a few hours to try and relax and forget.  We did meet some fantastic people while we were playing and we still play occasionally and we still stay in touch with them as well.  We even went on holiday to Malta and while we were there, met up with them and their family and really enjoyed it.  I don’t know if they even know how much their friendship and support over the years has actually saved our sanity. A big thank you to them for being there through the thick and thin for us and listening to us moan, groan, laugh and cry throughout the years.

 It was at this time we were dealt another massive blow, my stepmum Joyce was diagnosed with cancer and on October 6th , 2010 she passed away. It hit the whole family hard. She was a wonderful woman and the way she touched all of our lives is something that can never be forgotten.  She was a real diamond and I miss her every single day.  Every time I get good news I still go to pick up the phone to call her. I still think ‘What would she say or do?’ every time I make a decision or think about what to do next.  She was a true diamond and I hope she is somewhere proud of the man she helped me to become as I owe her more than anyone can imagine.

After years of struggling the fight came back to us after we managed to get some regular respite care for our daughter.  We had to fight tooth and nail for it but by this time it was nothing that was new to us as we have had to fight for everything.  I decided that I wasn’t going to sit in the house and mope around any more, I wanted to make a difference and tell people why things were so bad for families in our situation.  This is when I decided to look up SWAN again to see if they were still around and if I could help in any way.  I got a big surprise…..

SWAN had become SWAN UK and had been taken under the wing of the Genetic Alliance. The changes were huge from what I could see.  The first port of contact for me was via the Facebook group.  I filled out the application forms and joined up to find that there was a huge amount of activity on the group passing tips, information, stories and to my surprise laughing and joking about a number of different things.   For the first time in 8 years I felt that I had found somewhere I could talk and be heard, listen and be appreciated.  I felt that there was no taboo, no boundaries to what could and couldn’t be said for fear of offending someone and somewhere that I could both offer and receive advice and feel like I was part of something.  The families that I have spoken to via the Facebook group have become like my own family.  They are like brothers, sisters, nieces and nephews all part of the bigger picture and all now part of our journey through our life caring for a special needs child.  It is through that family that I decided to start this blog and through that family that I got the chance to talk to people about our experiences in the hope that SWAN UK can really make a difference in the future for families who find they have a child with a Syndrome Without A Name.  The hope is for me that as SWAN UK starts to grow and the community becomes bigger and stronger then our voice will get bigger and stronger to make sure that no family has to go through the isolation, fear and dark places that my family and I have had to experience.

(photo from Freefoto.com)

Because of SWAN UK our little cygnet, once lost in the mud and mire of finding a diagnosis, finding answers and explanations had developed into a ‘SWAN’.  A child with an identity in a bigger picture, a beautiful and unique child who had a family of other unique children to call family.  We were no longer alone in our searching, no longer alone in trying to find answers to what, why, where and when?

We had a home.

Eating my way to an early grave

Hi folks, this is going to be a toughie for me but I don’t want to dodge it any more.

I was eating myself into an early grave. No, that is not being overly dramatic, it is true. I suffer with Binge Eating Disorder and it is something I have struggled with for many, many years. Fortunately I haven’t had a binge episode in around 3 years now but I have come close a few times. Let me take you back to the beginning of the story of my binge eating journey.

A tackle must be made below the neck to avoid injury to both players.

When I was at school I was a fairly happy person and I was always engaged in lots of activities such as the school orchestra, drama performances and mostly I was a rugby player. I used to play rugby for the school team and I also used to play for a local team on weekends. I absolutely loved it. When I wasn’t involved in a match I was training. Now I fully admit I was never the fastest guy on the team, I couldn’t kick for toffee and I wasn’t the fittest person on the team either, but what I lacked in these areas I made up in dedication and determination. If I wasn’t playing or training then I used to get on my bike and ride all over the place and meet up with friends.

At the time this I was living with my mum and her boyfriend and there were lots of tensions at home and things often got very heated. I realise now that this point in my life was when I started to binge eat. I used to go to the local shop on the way back from school and I would buy crisps, sweets, chocolate…..basically anything that I could afford and get the most of for the money I had. Now when I say crisps, sweets and chocolate I don’t mean your normal standard sized bars, I am talking about the multi-pack varieties, the 2 for 1 deals etc. I used to eat all of these and dispose of the wrappers during the 10 minute walk back from the shop to the house. I never really considered at the time that this was abnormal or any kind of problem because I wasn’t overweight, I hadn’t gained any weight and I was still running around on a rugby pitch virtually every day. Things finally came to a head with my mum and I ended up moving house to live with my dad and his partner. I didn’t speak to my mother for many years after that but my sister remained living with her and her boyfriend.

At this time I started to get a flare up with my neck and back problems which started to affect my rugby playing. I would often end up injured after a scrum and occasionally would be taken to hospital to be checked out. They couldn’t find anything so I was usually discharged in a lot of pain and to a pissed off look from my dad and him telling me that he didn’t believe I was in pain because they had found nothing and it was a waste of his time. Now don’t get me wrong, I don’t want to make my dad out to be the bad guy, because even to this day they still can’t find a reason for the chronic pain I have in my back and neck. After a while it got to the point where I couldn’t play rugby any more and was advised by my doctor to stop if I was still getting the pains. It was a massive blow to me because I loved playing and I did try again a few times but I was lucky to last all of 5 minutes before I had to come off the pitch in agony. This effectively meant I went from being active and training/playing every day to nothing at all.

In the meantime the binge eating continued…….

My dad and his partner used to work in a bookmakers shop and during the summer months would often be working late until 9-10pm. This meant I was usually in the house on my own from around 4pm on a school day. This was usually the time that the binges would start getting really bad. I always managed to hide what I was doing from them so they were totally unaware what was happening until I told them years later.From where I lived there was a local corner shop about 5 minutes walk away and my bus used to stop right by it when I came back from school.

Chocolates (Photo: J. Paxon Reyes)

I used to get off the bus and go into the shop and, by this time my binges had gotten a lot worse, I would buy a cake, a tin of custard, a multi-pack of crisps, chocolate, sweets etc. I used to eat these as I made my way back to the house making sure that I would discard wrappers along the way. I would have eaten most of the things by the time I got to my front door and then I would get in and go straight for a bowl and eat the full cake and custard. With the wrappers from the cake and custard I would usually put in the outside bin underneath other things so they couldn’t be seen (Yes I know it is gross but it is part of the problem). After this I would head up to my dad’s bedroom where I knew he kept chocolates and sweets he had been bought as a present and I would take one or two chocolates, making sure they wouldn’t be too noticeable, sometimes even re-arranging them in the box. I would then head back downstairs to the fridge where I would eat a huge amount of cheese, any cold meats in the fridge and pretty much anything that was there ready to eat. Then I would go to the cupboard and get packets of instant mashed potato, stuffing and gravy granules, make them all up as they only needed hot water, eat the full amount they made (usually 3-4 servings) and then head to the freezer. I would take out anything that would cook in a deep fat fryer such as sausages, chicken nuggets chips etc. and make the full bagful and eat the whole lot. This is where the binge would usually end and the worst part would kick in. Now when I binged I was not in control of my body or thoughts. It is hard to explain (especially when I haven’t done this before!) but it is like you are aware of everything going on but you are powerless to stop it. My head is screaming at me that I shouldn’t be doing this and that I should put down the food but no matter how hard it tries it just doesn’t connect with the rest of my body. It is like being tortured every time it happened and knowing that no matter how hard you try you are powerless and nothing will deter you. Then when the episode is over the stomach pains start from overeating and it is like someone has filled you to the point of bursting and you literally feel like you can’t move a muscle. The next stage is the realisation and guilty feelings for eating so much food and, for me at least, stealing sweets from my dad. The final stage is the self loathing which is probably the worst and most damaging part of the binge episode. I felt worthless, disgusted with myself, ugly and that I shouldn’t even be alive. This would happen every day sometimes twice or three times a day. If people were around then I would find other ways to get food and smuggle it to my room or simply go out and walk around the street or park eating as I went.

Binge Eating Disorder (Photo: Alaina Abplanalp Photography)

This went on for many years to the point that my body would no longer feel hungry or full any more. I know that this is a foreign concept for people to grasp but with binge eating disorder your body eventually goes through cycles of binges and starvation. Basically what it meant for me was that I would binge on one day then not eat for one to three days afterwards. What this did was made my body go into emergency storage mode when I did binge, storing fat and then using it when I was ‘starving’ and not eating. This eventually got to the point where my body would not expect to get food at any particular time and when I did start eating it became like an eating ‘frenzy’ where I would keep going until it was physically impossible to eat any more. This is something that I have only managed to sort out about 3 years ago. I was 14 when the binge eating started, I was 22 when I found out it was an actual problem and I am 33 now . That is 19 years of binge eating and not ever feeling hungry or full from eating. I only realised this was a problem when I took an online quiz for mental health after I put on a lot of weight and no matter what I tried I couldn’t get rid of it. It was my wife who finally persuaded me to go and see someone about it. I was given sessions of Cognitive Behaviour Therapy which taught me how to recognise trigger situations for my binges and also how to cope with the damage the feelings of guilt, worthlessness and depression, had done to me over the years. It was so bad that I even had a plan on how to commit suicide. The only thing that ever stopped me was the fact that I was married and I had children and I couldn’t face leaving them without a dad/husband.

If my wife hadn’t realised there was a problem with me, my food and my depression I can honestly say I would not be writing this blog now. I was going to end my life. Wow, I can’t believe I actually got that out! My wife saved my life and that is yet another thing I owe her for. She gave me 3 wonderful girls and my life back. As I sit here now and think of all the wonderful things I have seen and done I feel foolish, stupid and crazy that I almost didn’t have it. That is why in my mind my wife is like an angel sent to me when I needed her most. She rescued me from the pit of despair and showed me that life is worth living. She then blessed me with three wonderful, beautiful girls and in my youngest SWAN daughter gave me a gift that taught me how to be a better person.

I am a fairly short guy standing at 5’7″ tall (170cm) and at my heaviest I weighed in at 315lbs (143kg) which resulted in my blood pressure being sky high and I developed Type 2 diabetes. I went through a series of yo-yo dieting and even got prescribed Sibutramine before it was removed from use in the UK. I only ever managed to get my weight down to around 280 lbs (127kg).

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Slimming World Logo (Photo credit: Wikipedia)

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October 2011 was the turning point for me. It was the anniversary of my stepmother’s death from fighting cancer that made me take stock and decide to change the way things were for me. I used to attend a Slimming World class with her and we would be there to spur each other on to lose the weight. I started trying to lose weight and only managed to get to the 280lbs (127kg) mark before stalling and I hovered there for a few months until, in December I decided I would sign up to go to Slimming World classes again in January. Since then my weight has dropped from 289lbs (131kg) and on the 25th June I received my 3 stones lost award meaning I now weigh 246.5lbs (112kg). I am about 1/3 of the way towards my final goal but already my diabetes has improved so my medication has been reduced, my blood pressure has come down and my BMI is now reducing as well.

I guess what I am trying to say is that anyone who is suffering out there in the world with these feelings, binge eating disorder or at any point feels like they are worthless you are not alone. There are other people who feel like this and there are other people who have been there and understand what is happening. Life is worth living, I have proof of that every single day that I see my wife and children. I hope that by reaching out with some of the things I talk about in this blog I might touch somebody, to make them feel like there is someone who understands and that I might give a little insight and understanding to those that have not experienced these things for themselves.

Whether it is Parenting a special needs child with an undiagnosed genetic disorder or SWAN, chronic pain, diabetes, binge eating disorder or anything else life is going to throw at me., I feel that the strength of my family and now my own determination will see me through

I promise the next posts will be on something a lot more cheerful as I don’t want everyone thinking I am a grumpy Gus (although my kids will assure that I am !) I do smile and laugh and have fun sometimes as well!

So until next time, Stay safe!

Reblog: The still of the night

Just thought I would revisit this blog for the new people I have met and networked with this past week or so. Thanks for reading and please do leave comments.

 

The Still of the Night

Sleepless In Newcastle

Hello Again Folks!

Once more I am awake in the wee small hours so I thought I would spend the time writing on my blog!  Why not, that is what it is here for I guess 🙂

I guess I should maybe go over some back history and fill you in on some of the details about my life.

I guess the best place to start would be when I met my beautiful wife.  It was in 1997, when I was 18 years old and I was at a theatre workshop in the centre of Newcastle.  I had been persuaded to go by a friend as it was during the holidays and wasn’t classed as part of the performing arts studies I was taking at the time.  Anyway when we got there I noticed this really good looking woman who I must admit I fell in love with at first…

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