Tag Archives: SWAN

My world: an outpouring to those who will listen…

Posted on by Sleepless In Newcastle

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

The state of the world we live in….

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

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

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

The world’s plan conspires against us….

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

The world our family lives in……

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

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

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

The world of a father in pain……

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

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

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

Until next time folks, Stay Safe and Keep Smiling!

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Superwoman: A dedication

Posted on by Sleepless In Newcastle

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

Superwoman is Fighting the Fight….

For all the mothers fighting
For better days to come

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

When the going gets tough……

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

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

Superwoman SWANS together can fly so high…..

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

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

Superwoman saves the day….

Cause I am a Superwoman
Yes I am
Yes she is

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

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

Until next time folks, Stay Safe and Keep Smiling!

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Without a Diagnosis – The Video Story

Posted on by Sleepless In Newcastle

Without a Diagnosis – Video Documentary as part of Feel Good Friday

Hi folks, here we are at the end of the week once again and I wanted to share something that made me feel quite good this week which was the discovery that the documentary “Without a Diagnosis” that Kat Williams had been working on was ready to be shared with the world.  We have had a pretty rough time of it during these holidays with illness, stress and a million other little things that all add up to a bit of an unpleasant time of it.  We often feel like this, as do many other families of children without a diagnosis, but especially during the summer holidays as our children are taken out of their daily routine and plunged into a totally different one without any warning.  This is often the case when they go back to school as well because we have to get them back into a new routine once more.  This is why we all try and grab onto anything that gives us a little hope or makes us feel a little bit better during the holidays and Kat’s video documentary is one of those things.

Kat Williams is a student journalist who is studying an MA in Multimedia Broadcast at the University college of Falmouth and she has made this documentary about children in the UK who have a genetic condition without a diagnosis or a Syndrome Without A Name (SWAN).  I know I have spoken about SWAN UK before as I am a member because of my daughter Pretzel.  It is not very often that we get a spotlight shone on us in this kind of way so we all jump at the opportunity of promoting these things when we get the chance.  I have sat  watching through this video at least 4 times now and I have to say that I have never seen something that has so accurately caught the feelings, sentiments and the real situations that families like ours face each and every day.  It is a fantastic piece of work and I hope that it gets seen by as many people as humanly possible.  I will be sharing it everywhere that I can and that is where I would like you folks reading this to come in and help me as well.  First I would like to share with you the documentary “Without a Diagnosis”:

 

 

I hope that you may now have a little more understanding of the dilemmas and some of the problems that can face people without a diagnosis and I hope that you will feel like you would like to help families such as mine.  I hope I am not sounding too preachy or self-righteous with this post as it is a simple way of letting you folks know what families like mine go through on a day to day basis.  This is such a Feel good Friday feeling for me because it is just an extra step towards my family being understood and maybe having to fight a little bit less each time a project like this is done.

I would love for you to share this video with as many people as you possibly can and I would also ask that you please go and visit Kat’s blog and let her know what you thought of the documentary and how it has made you feel.  Please let her know how much this kind of support means to families like mine and at the same time get a message of hope, understanding and love out for all of those families who are struggling without a diagnosis across the world.

Thank you folks and until next time,

Stay safe and Keep Smiling!

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Caring for a Special Needs Family

Posted on by Sleepless In Newcastle

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.