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…

View original post 1,607 more words

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.

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…

View original post 1,607 more words

Previous Post

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.

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…

View original post 1,607 more words

The roundabout of parenthood

Hi again folks, I hope everyone is well!

Well again insomnia has me sitting in front of my PC with the headphones on listening to music and writing another post for my blog.  I do hope that these posts aren’t getting on your nerves as they seem to be coming thick and fast over the past week or so!

I was reading a post on SWAN UK’s Facebook Page and it got me thinking again about a subject that my wife and I have danced around for about 3-4 years now……having another child.

My wife and I always had envisioned having a large family of 4 kids.  We always talked about it and with 3 girls we really hoped that we would have the chance to have a little boy.  After the really long labour and traumatic birth of our SWAN daughter (you can read about it here) I was always hesitant as I guess I am still a bit traumatised by seeing my wife go into shock after the fetal blood sampling they needed to do.  For anyone who isn’t sure what this involves I will explain.  A fetal blood sample is taken from the head of the infant to check the blood pH level to see if the child is getting enough oxygen.  This caused my wife’s body to go into shock as her cervix was in the wrong position and it shouldn’t have been performed in our opinion (you can read more about it here if you want).  I can still see in my mind the force used and her body shaking after the procedure was finished.  It was a horrible experience for her and for me to see and it scares me to think that it could happen again if we were to have another child.  In fact the though of all the prodding and poking that would be involved throughout the pregnancy for her and the baby is something that I feel is unfair for her to experience and it worries me every time we talk about it.

The major factor that comes into play is that our youngest daughter has an undiagnosed genetic condition. She has gone through every single test that can be performed to look at all of the possible syndromes and conditions they know about and they still come up blank.

(I got a bit sidetracked here and wrote a whole load of stuff about our worst Christmas but that will be another post as it went off topic slightly)

So we asked the geneticist if there were any chances that another child would have the same genetic condition and the response we got was to wait a few more years to see if they have found anything.  They wouldn’t say whether there was or wasn’t a chance of it happening again.  So here we are 5 or 6 years on in the same position of wondering and I am now 33 and my wife is 37.  Time is rapidly running out for us to have another child of our own. We both desperately want to but there is always that niggling doubt in the back of our minds of what if? We have even considered adoption as I always said I would love to offer a child the opportunity of becoming part of my wonderful family and getting the love and care that every child deserves.  We feel that it is an awkward path to go down though as we have a 3 bed bungalow that is adapted for my daughter’s needs and it would mean another child sharing with our older daughter.  It also then has us questioning whether it is fair to have a child who has gone through a traumatic time already being put into a family where there is a child with special needs who needs a lot of care and attention. And around and around we go again!

 This is not something exclusive to us I have found as I read on the SWAN UK Facebook page.  There are a number of families going through the same question and wondering if they are playing a roulette wheel of chance. It is heartbreaking to think there are so many families out there who have so much love to give and so much devotion to their families already but they feel guilty about thinking of having another child.  I read a wonderful blog at areyoukiddingney where the writer has a more optimistic view on it all.

I think the biggest fear that I have is that if I did have another child of my own and it was growing up and hitting all the milestones that my daughter still hasn’t reached, it would make me feel even worse and I don’t think I could handle that to be honest.  When people ask me what I would do if I had three wishes, the very first thing that jumps to my mind is to take all of the problems away so my beautiful daughter can experience everything that this world has to offer.   I would happily trade places with her just to take it all away from her, I feel so helpless at times with my own disability and then watching her go through things that I can’t control or help with.

And so the roundabout turns again and we get back to the start of the argument again.  It sometimes feels like a playground with my emotions.  The roundabout going around and around the issues, feeling the ups and downs of the seesaw depending on what has happened that week and the swings of my mood back and forth between happy and energetic to depressed and angry at the fact I can’t move some days without being in agony, even with the copious amounts of pain medications that I take.

 So that is the question we have today, What would you do in this situation?

Well I guess that is it for now as I don’t want to overload anyone with information so:

Until next time, Stay Safe!

Blog party to grow following!

Hello again folks!

I just wanted to give a short little message about something I am hoping to participate in that will grow the amount of people following my blogs and hopefully get our family stories out into the world.

I came across this blog post about getting more followers for my blog and I thought the idea was a great one so I am going to give it a try.  The idea is to get a lot of bloggers in one place so that they can look at each others blogs and start sharing followers and stories with each other.  There seems to be a lot of people who are interested in doing so I figured why not join in?

They are looking for bloggers with less than 200 followers to go in one column of the page and then any bloggers with over 200 followers will go in another column.  The idea being that blogs of the same sort of subject may get some kind of crossover and share some followers with each other.  it is a very good idea and I am interested not only as a blogger but a reader as well!

So here goes and fingers crossed it all comes together!

Is it a bird? Is it a plane? No it's supermum and supergirls!

Hi again all and thanks for reading!

I want to talk about my wonderful wife and daughters in this post and pay tribute to the fantastic women they are and also the huge amounts of time, effort and love they put into this family of ours.

I first met my wife when we both attended a theatre workshop in Newcastle which was running during the summer break from college.  We were both studying performing arts at different colleges in Newcastle at the time and it was fate or luck or whatever you believe in that brought us together.   I had never originally wanted to go to the workshop and it was a friend who pushed me and pushed me to go.  I later found that the same was the case for my wife as well!  We got talking and, I know this sounds so corny and cheesy, I fell in love at first sight.  There was something about her that made me feel like I had known her for years and she had this beautiful smile which formed cute dimples in her cheeks.  I was well and truly smitten. Now the perfect scenario would have been for her to have fell in love with me instantly but it wasn’t the case I am afraid.  I remember thinking I don’t have a chance with this gorgeous woman so I had resigned myself to the fact that nothing would ever happen.  She had a daughter at the time and had just come out of a serious relationship and here was this 17 year old (soon to be 18 year old) guy crushing on her really bad.

I knew that I had to at least try to get a date though as if I didn’t I would be kicking myself for the rest of my life, so a friend and I got talking and hatched a plan which would eventually lead to me being alone with her.  I know, again so very corny!!!!  Anyway as it happens I called her up and asked her out on a date and to my surprise she said yes!  To say I was happy was a slight understatement until the realisation set in that I would have to try and work my charm on this beauty.

Now I have never been the most confident of guys around women so I was so very nervous when I went to meet her but that soon melted away when I got to talking to her again.  We talked and talked and talked.  It is something that has carried on into our married life as we often can sit up into the early hours of the morning talking about absolutely anything and I absolutely love the fact I can share absolutely everything with my wife.   It was my birthday that weekend and I was turning 18 so I asked her if she wanted to come to a party down at my Dad’s house.  I admit now that I was a little sly because I didn’t tell her that these family gatherings were exactly that, the whole family gathered together.  My grandmother, aunties, uncles, sisters and brothers were all there which I think gave her a bit of a shock. Though I am told not as much of a shock as my dad and step-mum had seeing me walk across the street in a black tie-dye shirt like something out of Woodstock. It wasn’t that bad……..honest!

It wasn’t long after we got together that we moved into a flat and that was the beginning of the best time of my life.  She already had a daughter from a previous relationship whom I fell in love with immediately.  She was the cutest, most intelligent little girl and she had a great little laugh that could light up a room.  It was an absolute joy to see her at the weekends and she instantly became ‘my daughter’ even though biologically that wasn’t so.  I have to say at this point I give all credit to my family as she was instantly looked at as a grand-daughter, niece, cousin etc.

I proposed to my wife 3 times in total!  Each time she said yes and that may sound a little strange but it was because I couldn’t believe it was happening so I kept asking her to make sure she wanted to spend the rest of her life with me.  I proposed the first time after we had spent a really nice, cosy night in together while looking after her mum’s house while she was on holiday.  The second time was when we went down to buy the engagement rings and the third time was up on stage after I had finished performing with the band I was in at the time.  I still can’t believe I had a ‘Yes’ 3 times!

The day of our wedding came and I was so nervous.  I was only 20 and a lot of people think that is too young to be married but I say that when you know it is right then you know it is right.  We got married in a registry office in Newcastle city centre and I can remember feeling so nervous about messing things up.  It could partially have been the fact that people had been plying me with Jack Daniels at a bar just before as well.  Naughty I know but how could I refuse ? I managed to compose myself but I still made a mistake and went to put the ring on the wrong hand!!!  We had a wonderful party afterwards and ended up the night tired but extremely happy.  We had our honeymoon in Malta and that is where we fell in love with the country and the people.

In early 2000 my wife told me that she was pregnant.  I was over the moon as that meant our little family of the three of us was going to grow and I loved the thought of having another kid running around.  Manga arrived in September of that year and I remember feeling so nervous throughout the labour but the moment she was born I fell in love all over again.  There was my little girl.  She was beautiful and I remember crying with the emotion and pure joy.  Every day since then has been an adventure and we have had our ups and downs, but I wouldn’t change it for the world.

Then in 2003 my wife told me I was going to be a dad again.  We were so happy, a little worried as financially we weren’t in the best shape, that we would have another addition to our lovely family. We went through a normal pregnancy but then when my wife went into labour things got a bit complicated which I have blogged about previously. That was the day that my wife transformed into supermum and my daughters turned into supergirls.

My youngest daughter, Pretzel (now you can see why we call her that!) has complex special needs which means she functions on a level many years below her age.  She has just turned 9 this May and she has a developmental level of around 2 years old. She suffers with Epilepsy,  has hypermobile joints (we call her our ‘pretzel baby’), visual problems and hearing problems. She relies on us for absolutely everything, is non-communicative and has no comprehension skills or awareness of danger.  This means she has to be watched very closely 24/7/365.

Ever since the day Pretzel was born she has had one thing go wrong or another with her health and at one point I am sure we were going to be on the hospital staff Christmas card list because we were in there so often.  But guaranteed every time she had a stay in hospital my wife would be there (often having to sleep in a chair as beds were hard to come by) without a complaint at having to do it.  There were some grumblings every now and there because she would get bored or fed up of the lack of sleep.  Each time, Manga would come with me to the hospital to see everything was O.K with her baby sister and she would never moan or complain about being there.  I think often siblings can be forgotten in the huge role they play in the life of a child with special needs. There is a lack of support and information given to the whole family unit but that is something for another blog maybe.

As Pretzel has grown her needs have changed constantly and we have had to try and adapt as a family, often without warning, to a lot of stressful situations.  On a few occasions we have almost lost Pretzel to seizures from her epilepsy and also from pneumonia at one point as well.  Throughout all of this there has never been any complaint from our other daughters or my wife about what is happening or what they have to do to accommodate the changes.

I want to take this chance to go into detail about how my girls are supergirls.  Manga has never had a birthday party, she has rarely had sleepovers (only when Pretzel is in respite), she has had to change schools and move house and occupy herself at times when we have been tired, stressed or busy looking after her sister.  Not once has she complained about any of this (until recently and understandably)  even though deep inside I know that it must have been hard for her.  On top of all of this she has helped look after her sister and would fetch things like nappies, wipes, cups of juice and toys just to keep her little sister occupied.  She still does it to this day without us asking her to and I truly appreciate and love her for that. Jaffa has also done all of these things including changing the nasty nappies and all without a flicker of resentment.

This is what makes my daughters the supergirls that they truly are!

 We just about had all that under control when unfortunately my back gave out and I became disabled myself.  I suffer from crippling pain and limited mobility.  I don’t know if it was exacerbated by the fact we had to carry Pretzel up and down stairs for so long or trying to bathe her which is usually a two person task in itself but it has resulted in me taking a whole cocktail of medications just to be able to get out of bed in the mornings.

Now I have to say I might be a bit different to most guys but I have always felt that I have to do my share to look after the house and I was always pulling my weight with household chores.  I would vacuum, dust, polish, tidy up, wash and dry dishes, cook and attempt ironing clothes (I am truly hopeless, to the point Zanna said I am unteachable!).  All of this was to help out while Zanna was dealing with Pretzel but obviously when my back went out that all changed.  I can’t dust or polish, dry dishes or cook any more as the strain on my back is far too much.  I do try to cook as much as I can as I truly love doing it and I try and vacuum as much as I can just to help out but my wife has now taken on these jobs as well as everything else that she was doing as well.  This as well as sorting out my medications into pots so I remember to take them (a side effect of the medications I am on is forgetfulness) and also massaging my back, legs and feet to make sure I don’t get too stiff.  She drives me to appointments and pushes my wheelchair around the shops when we get the chance to be out. All the time she never complains or moans, she just simply gets on with it and that is even when we have only had 1-2 hours sleep if we are lucky.

This and more is what makes my wife a supermum!

I want to say this to you my beautiful wife:

Zanna, I love you more and more every day, you are my best friend, my love and my everything.  The reason I am here today is because of your strength, your love and your support.  You helped me through some dark times where I thought I never would come out of the other side but like the angel that you are you took my hand and guided me through and showed me the way.  I owe you everything, I want to give you everything you deserve for being the wonderful, loving and caring person that you are.  You have given me some of the best gifts that can be given, happiness, love, a family and all I can offer in return is my heart and my undying love.

To my darling girls:

You have had to deal with things that others your age can’t even comprehend.  You have dealt with it with grace, composure, patience and love.  You are growing into fine examples of young women and your strength and resolve are unmatched.  I know that you will go into the world before you with a sense of morals, understanding and compassion that will lead you into many great things.  I love you all so much and there will never be a single day that goes by where I don’t worry about you but in the back of my mind I know you are strong enough to deal with anything that comes your way.

To my darling SWAN:

You came into this world not asking for the difficulties that you have but you have shown us on more than one occasion that you are a fighter and love to prove people wrong in their assumptions.  You have taught me more in your life time than I have ever learned in mine.  You have made me a better person, more compassionate, more understanding, more patient and more determined.  Every day I have had with you is a blessing and I feel lucky to have been given the chance to love you and care for you as much as I do.  You are a star, you are a SWAN in both name and grace and I love you more than words can say.  Keep proving them wrong chicken, show them just what you can do my little pretzel girl!

Sorry for the long post again.  I did warn everyone when I started this blog that I tend to waffle on and I can lose track sometimes but I hope you have enjoyed an insight into the fantastic women in my family and just how super they really are.

Until next time, Stay Safe!

Is it a bird? Is it a plane? No it’s supermum and supergirls!

Hi again all and thanks for reading!

This is my gorgeous family and I love each and every one of them!

I want to talk about my wonderful wife and daughters in this post and pay tribute to the fantastic women they are and also the huge amounts of time, effort and love they put into this family of ours.

I first met my wife when we both attended a theatre workshop in Newcastle which was running during the summer break from college.  We were both studying performing arts at different colleges in Newcastle at the time and it was fate or luck or whatever you believe in that brought us together.   I had never originally wanted to go to the workshop and it was a friend who pushed me and pushed me to go.  I later found that the same was the case for my wife as well!  We got talking and, I know this sounds so corny and cheesy, I fell in love at first sight.  There was something about her that made me feel like I had known her for years and she had this beautiful smile which formed cute dimples in her cheeks.  I was well and truly smitten. Now the perfect scenario would have been for her to have fell in love with me instantly but it wasn’t the case I am afraid.  I remember thinking I don’t have a chance with this gorgeous woman so I had resigned myself to the fact that nothing would ever happen.  She had a daughter at the time and had just come out of a serious relationship and here was this 17 year old (soon to be 18 year old) guy crushing on her really bad.

I knew that I had to at least try to get a date though as if I didn’t I would be kicking myself for the rest of my life, so a friend and I got talking and hatched a plan which would eventually lead to me being alone with her.  I know, again so very corny!!!!  Anyway as it happens I called her up and asked her out on a date and to my surprise she said yes!  To say I was happy was a slight understatement until the realisation set in that I would have to try and work my charm on this beauty.

Now I have never been the most confident of guys around women so I was so very nervous when I went to meet her but that soon melted away when I got to talking to her again.  We talked and talked and talked.  It is something that has carried on into our married life as we often can sit up into the early hours of the morning talking about absolutely anything and I absolutely love the fact I can share absolutely everything with my wife.   It was my birthday that weekend and I was turning 18 so I asked her if she wanted to come to a party down at my Dad’s house.  I admit now that I was a little sly because I didn’t tell her that these family gatherings were exactly that, the whole family gathered together.  My grandmother, aunties, uncles, sisters and brothers were all there which I think gave her a bit of a shock. Though I am told not as much of a shock as my dad and step-mum had seeing me walk across the street in a black tie-dye shirt like something out of Woodstock. It wasn’t that bad……..honest!

It wasn’t long after we got together that we moved into a flat and that was the beginning of the best time of my life.  She already had a daughter from a previous relationship whom I fell in love with immediately.  She was the cutest, most intelligent little girl and she had a great little laugh that could light up a room.  It was an absolute joy to see her at the weekends and she instantly became ‘my daughter’ even though biologically that wasn’t so.  I have to say at this point I give all credit to my family as she was instantly looked at as a grand-daughter, niece, cousin etc.

I proposed to my wife 3 times in total!  Each time she said yes and that may sound a little strange but it was because I couldn’t believe it was happening so I kept asking her to make sure she wanted to spend the rest of her life with me.  I proposed the first time after we had spent a really nice, cosy night in together while looking after her mum’s house while she was on holiday.  The second time was when we went down to buy the engagement rings and the third time was up on stage after I had finished performing with the band I was in at the time.  I still can’t believe I had a ‘Yes’ 3 times!

The day of our wedding came and I was so nervous.  I was only 20 and a lot of people think that is too young to be married but I say that when you know it is right then you know it is right.  We got married in a registry office in Newcastle city centre and I can remember feeling so nervous about messing things up.  It could partially have been the fact that people had been plying me with Jack Daniels at a bar just before as well.  Naughty I know but how could I refuse ? I managed to compose myself but I still made a mistake and went to put the ring on the wrong hand!!!  We had a wonderful party afterwards and ended up the night tired but extremely happy.  We had our honeymoon in Malta and that is where we fell in love with the country and the people.

In early 2000 my wife told me that she was pregnant.  I was over the moon as that meant our little family of the three of us was going to grow and I loved the thought of having another kid running around.  My daughter arrived in September of that year and I remember feeling so nervous throughout the labour but the moment she was born I fell in love all over again.  There was my little girl.  She was beautiful and I remember crying with the emotion and pure joy.  Every day since then has been an adventure and we have had our ups and downs, but I wouldn’t change it for the world.

Then in 2003 my wife told me I was going to be a dad again.  We were so happy, a little worried as financially we weren’t in the best shape, that we would have another addition to our lovely family. We went through a normal pregnancy but then when my wife went into labour things got a bit complicated which I have blogged about previously. That was the day that my wife transformed into supermum and my daughters turned into supergirls.

My youngest daughter has complex special needs which means she functions on a level many years below her age.  She has just turned 9 this May and she has a developmental level of around 2 years old. She suffers with Epilepsy,  has hypermobile joints (we call her our ‘pretzel baby’), visual problems and hearing problems. She relies on us for absolutely everything, is non-communicative and has no comprehension skills or awareness of danger.  This means she has to be watched very closely 24/7/365.

Ever since the day my youngest daughter was born she has had one thing go wrong or another with her health and at one point I am sure we were going to be on the hospital staff Christmas card list because we were in there so often.  But guaranteed every time she had a stay in hospital my wife would be there (often having to sleep in a chair as beds were hard to come by) without a complaint at having to do it.  There were some grumblings every now and there because she would get bored or fed up of the lack of sleep.  Each time, my oldest daughter would come with me to the hospital to see everything was O.K with her baby sister and she would never moan or complain about being there.  I think often siblings can be forgotten in the huge role they play in the life of a child with special needs. There is a lack of support and information given to the whole family unit but that is something for another blog maybe.

As my youngest daughter has grown her needs have changed constantly and we have had to try and adapt as a family, often without warning, to a lot of stressful situations.  On a few occasions we have almost lost my daughter to seizures from her epilepsy and also from pneumonia at one point as well.  Throughout all of this there has never been any complaint from our other daughters or my wife about what is happening or what they have to do to accommodate the changes.

I want to take this chance to go into detail about how my girls are supergirls.  My oldest daughter has never had a birthday party, she has rarely had sleepovers (only when our youngest is in respite), she has had to change schools and move house and occupy herself at times when we have been tired, stressed or busy looking after her sister.  Not once has she complained about any of this (until recently and understandably)  even though deep inside I know that it must have been hard for her.  On top of all of this she has helped look after her sister and would fetch things like nappies, wipes, cups of juice and toys just to keep her little sister occupied.  She still does it to this day without us asking her to and I truly appreciate and love her for that.  My step-daughter has also done all of these things including changing the nasty nappies and all without a flicker of resentment.

This is what makes my daughters the supergirls that they truly are!

 We just about had all that under control when unfortunately my back gave out and I became disabled myself.  I suffer from crippling pain and limited mobility.  I don’t know if it was exacerbated by the fact we had to carry our daughter up and down stairs for so long or trying to bathe her which is usually a two person task in itself but it has resulted in me taking a whole cocktail of medications just to be able to get out of bed in the mornings.

Now I have to say I might be a bit different to most guys but I have always felt that I have to do my share to look after the house and I was always pulling my weight with household chores.  I would vacuum, dust, polish, tidy up, wash and dry dishes, cook and attempt ironing clothes (I am truly hopeless, to the point my wife said I am unteachable!).  All of this was to help out while my wife was dealing with my youngest daughter but obviously when my back went out that all changed.  I can’t dust or polish, dry dishes or cook any more as the strain on my back is far too much.  I do try to cook as much as I can as I truly love doing it and I try and vacuum as much as I can just to help out but my wife has now taken on these jobs as well as everything else that she was doing as well.  This as well as sorting out my medications into pots so I remember to take them (a side effect of the medications I am on is forgetfulness) and also massaging my back, legs and feet to make sure I don’t get too stiff.  She drives me to appointments and pushes my wheelchair around the shops when we get the chance to be out. All the time she never complains or moans, she just simply gets on with it and that is even when we have only had 1-2 hours sleep if we are lucky.

This and more is what makes my wife a supermum!

I want to say this to you my beautiful wife:

I love you more and more every day, you are my best friend, my love and my everything.  The reason I am here today is because of your strength, your love and your support.  You helped me through some dark times where I thought I never would come out of the other side but like the angel that you are you took my hand and guided me through and showed me the way.  I owe you everything, I want to give you everything you deserve for being the wonderful, loving and caring person that you are.  You have given me some of the best gifts that can be given, happiness, love, a family and all I can offer in return is my heart and my undying love.

To my darling girls:

You have had to deal with things that others your age can’t even comprehend.  You have dealt with it with grace, composure, patience and love.  You are growing into fine examples of young women and your strength and resolve are unmatched.  I know that you will go into the world before you with a sense of morals, understanding and compassion that will lead you into many great things.  I love you all so much and there will never be a single day that goes by where I don’t worry about you but in the back of my mind I know you are strong enough to deal with anything that comes your way.

To my darling SWAN:

You came into this world not asking for the difficulties that you have but you have shown us on more than one occasion that you are a fighter and love to prove people wrong in their assumptions.  You have taught me more in your life time than I have ever learned in mine.  You have made me a better person, more compassionate, more understanding, more patient and more determined.  Every day I have had with you is a blessing and I feel lucky to have been given the chance to love you and care for you as much as I do.  You are a star, you are a SWAN in both name and grace and I love you more than words can say.  Keep proving them wrong chicken, show them just what you can do my little pretzel girl!

Sorry for the long post again.  I did warn everyone when I started this blog that I tend to waffle on and I can lose track sometimes but I hope you have enjoyed an insight into the fantastic women in my family and just how super they really are.

Until next time, Stay Safe!

Health suffers through caring

Hi again all and I hope this post finds you well!

I was sitting here thinking about some of the things that I could blog about as I am awake again in the wee, small hours of the morning.  I thought about talking about the fact it is carers week, or how carers sacrifice their own health because of their caring role or even how fathers of children with special needs children often feel isolated.

I my own personal experience I have had experience of both my own health suffering as a result of my caring role and also as a father feeling a lack of adequate support as well.  I want to talk in this post about my health first and later in the week I will go into what it is like for me as a father trying to cope with a caring role.

I have suffered for many years now with Chronic Back Pain for which they haven’t been able to find a cause.  I have been for an MRI scan and I have had various alternative treatments such as acupuncture and using a TENS machine but nothing has worked so far.  At the moment I am currently taking Morphine Sulphate Tablets, Oramorph (Morphine Solution), Diazepam, Acupan, Paracetamol and Feldene Gel for muscle spasms.  On top of this I also have to take Omeprazole to protect my stomach and Metformin to cope with type II diabetes.  So as you can see that is a fairly potent mix and I need to take this every day otherwise I am in such a great deal of pain that I can barely move from my bed (if I even get in it due to my insomnia as well).

The problems with my back have been around as far as I can remember as I used to get severe pains and muscle spasms when I was out playing with friends at about 7 or 8 years of age.  They were so bad that I used to ask my younger sister to punch me in the bottom of the back to try and ease the muscles off (I know, every sister’s dream to punch her older brother).  This used to work for a while but it did get worse and I used to ask her to walk across the bottom of my back to try and ease it off.  These were always put down to ‘growing pains’ and I thought nothing more of it but I just learned to cope.

My back problems surfaced again really badly when my second daughter was born in 2000 which resulted in me being bedridden for a long period of time and even when I was able to get out of the house it was to go to the doctors where I was told I had back problems ‘because I was fat and ate too much junk food’.  Now they had not asked me any questions about diet or anything like that at this point so my self-esteem bottomed resulting in me taking antidepressant tablets for a long time.  What was unknown at this point was that I was suffering from Binge Eating Disorder (I will talk about this in a future post).

My weight ballooned up at this point to around 19 ½ stones (273 lbs) and at 5’7” (170 cm) this was way too much over what I should be.  I suffered on and off with back problems for the next 3 years and my weight fluctuated up and down the whole time.

In 2003, SWAN (Syndromes Without A Name) daughter was born and that is when my health started to take a real nose dive.  My daughter has hypermobility and global developmental delay amongst other things but this meant that we had to carry her everywhere and that included up and down the stairs to bed and around the house all day, every day.  This totally devastated my back and very nearly caused my wife to suffer a similar fate as we were constantly carrying and moving her everywhere we went.  As she got older, she got heavier and her behaviours got a little more violent and not only were our bodies were battered and bruised, but our mental health suffered as well.  We were lucky to get an hour sleep between us on most nights and, because our daughter is non-communicative, she would scream or moan from the moment she woke up until the moment she went to sleep (she often still does to this day).   We both ended up on antidepressants, gained a lot of weight (my heaviest was 22 ½ stones (315 lbs)) and were generally run down, stressed and felt like there was no way out of the desperate situation that we were in.

It is worth mentioning at this point that during all of this physical and mental exertion looking after our daughters there was also the fight for DLA as we had to go to tribunal to get the correct amount, the fight for the correct equipment to make sure we could transport our daughter to appointments etc., the fight to have the correct therapies, the fight with specialists about telling us she had numerous different syndromes and then telling us a few weeks later they weren’t correct and finally the fight to try and get some kind of break away from our daughter so we could rest.  I can safely say with my hand on my heart we had truly hit rock bottom.

Fortunately we feel like we hit a lottery win when we finally moved out of our old house into a 3 bedroom bungalow which was perfect for both myself and my daughter and had all of the adaptations that we needed already done.  My daughter progressed fairly quickly and started to get mobile and can now walk from our living room to her bedroom on her own.  This was a major step for all of us as she gained some independence and started to come out of her shell a bit more.  Her awareness levels raised and she became a little more interactive with the world around her.  We also found we were entitled to some respite with a local short break care unit.  They are fantastic with all of the children and it really did start to give us some of our personality back and allowed us time once a month to get some rest and recuperate from the many sleepless nights that we still have.

So at present we still feel like we are automatons most of the time, we still struggle to get through day to day living while grabbing any time we can together, I still struggle to function daily and need my medication just to get out of bed and we could still do with a lot more quality sleep.   I have started to lose weight dropping just shy of 3 stones (42 lbs) since January 2012 and I still struggle with my insomnia but things could be a lot worse.   Things could be an awful lot better as well but I don’t see it happening any time soon!

Until Next Time Stay Safe