Sunday 16th October

Time flies

I didn't realise how long it's been since I last blogged so thought a little update was in order. I actually wrote the first paragraph on 28th August but didn't finish it.

Since I last wrote I've been very up and down but to be honest it's what I've got used to. Although it's now been seven years since Rebecca left us and I thought life would have become a bit easier, it hasn't, in fact  since Christmas, it's been harder. I've spoken to Paul about this and it is the same for him.
As months and years goes by I live without seeing, hearing, touching and living with Bec and it's sad not being able to watch her grow older. I talk to her every day and this it makes me realise there's so much happening that she isn't part of any more and it hurts.

Anyway, since I wrote this even more time has flown by.

We completed the triathlon and although it was hard, Emma and Paula who helped me over the finish line were absolute stars ( I don't think I'd have finished without their help) and we raised a total of £1908.00 between us.

We also did a tombola at Ackworth gala and raised £220.00.

Me, Paul and Jess had our mini break in Masham which we thoroughly enjoyed as usual with lovely weather, plenty of walks and copious amounts of alcohol.

We then had the golf day on 30th July and although we raised £1208.00 we were a bit disappointed it wasn't more. This is because we've been used to raising well over £2000 and it felt a bit like a failure. Having said that any money we raise is better than nothing and we are extremely grateful for all the people who tirelessly help us and those who came on the day and played golf and also gave generously. We're also grateful to Kevin manager of  Whitwood golf club who was so helpful and nothing was too much trouble.

As I mentioned earlier, time moves on and so does everybody else's lives and this is where I have problems. I see people Bec went to school with getting married, having children, my own nieces and nephews doing the same. As much as I'm pleased for them and their families, especially my own family, it's also hard to watch knowing it's not something we'll experience. I've said before, I could have accepted not having grandchildren If I'd still had Bec but having neither is cruel and takes some accepting.
I cope mostly but there are times that I can't and when that happens, I just have to let the sadness and sorrow happen and hope it passes quickly.

September was a hard month. My brother Allan died unexpectedly of a heart attack at the age of 61. He's had a few health problems over the years including some issues with his heart but none of us expected them to kill him. I didn't see him regularly, in fact it's a few months since I spoke to him but nothing prepared me for the shock of losing him so suddenly.
I'm still struggling with it at the moment and it has brought back a lot of very painful memories from losing Bec and my Dad. My Dad's 6th anniversary was on 17th September and Allan passed away on the 9th.
I'm not sure if Allan had an idea he wasn't as well as we thought he was because he'd actually left his wishes about his funeral some months ago, one of them being a collection in lieu of flowers and donations to go to Cystic Fibrosis.
He loved and admired Bec and was always one of the the first to give me a donation when I was doing anything for CF so this didn't surprise me at all. Thanks Allan, generous to the end:)

September wasn't all bad though because my lovely niece Kayleigh gave birth to her beautiful daughter Georgia Rose on 11th September. So to Kayleigh, her husband Dean, my brother Rob and his wife Gail ( grandparents for the first time) plus aunty Brogan and Uncle Michael, congratulations on the little bundle of joy that's just made your lives so special.

We're not doing a Christmas raffle this year, to be honest I haven't got the enthusiasm for it. Losing my brother has knocked me for six and we've decided to take a step back and recharge our batteries for a while.
We're still planning on doing the cricket match and I've been in touch with Emmerdale about coming next year so I will of course follow this up if needed.

The running total for Becci's fund so far is £43611.00 so not a bad amount in 7 years.

Anyway, on that note I'll say tara for now and as always, thank you for reading.

Sue x

CF awareness month and training

8th May

Since I last posted I've had my birthday which I found particularly hard this year. I kept looking for reasons to explain why this year was bad compared to last year, but really there's no rhyme or reason for how I feel from one year to another and I've got to keep that in mind. Note to oneself " stop beating yourself up"
On the day Paul took me to Ponte races and although it was freezing and we didn't win a penny between us, it was a good end to the day. Probably made better by the copious amounts of lager I drank and a visit to a couple of pubs in town :)

I've been training for the Triathlon ( if you don't know it's on 12th June, just giving site will be posted at the end ) and I'm managing to run between three - four miles twice a week, swim 32 lengths once a week and have done a nine mile bike ride. I'm going to have to put it altogether soon to see how I go but I've got a few more weeks yet.
Due to suffering with Labyrinthitis since Monday I haven't been able to anything which is proper doing my head in. The constant dizziness has gone but I'm still getting waves of light headedness and walking as if I'm drunk which is a bit annoying as I didn't have a drink until yesterday!!!!! I've made up for it now though I couldn't watch Cas Tigers play and not have a drink, especially as we made it through to the next round of the Challenge Cup :)
 
Anyway, the plan is to run home from work tomorrow, go swimming on Tuesday and Wednesday, get on the bike Wednesday then another run.

We're having a charity golf day this year instead of a cricket match. It's on Saturday 30th July at Whitwood golf club and we need players to take part. If anyone is interested, we need teams of four at a cost of £120 per team. There's also foot golf as well for non golfers and kids in teams of four at a cost of £40 per team. There will be prizes for both along with the usual auction, raffle, food, and other games. If anyone is interested in putting any teams together please let me know. 

It's Cystic Fibrosis awareness month so I thought I would give out a bit of information about the EVIL illness.

Cystic fibrosis (CF) is one of the UK's most common life-threatening inherited diseases. One person in 25 carries the faulty cystic fibrosis gene usually without knowing, over two million people in the UK. If both parents have the defective gene any children they may have, have a one in four chance of having cystic fibrosis. Around 9,000 people in the UK have cystic fibrosis, that's 1 in every 2,500 babies born. Cystic fibrosis affects around 100,000 people around the world.

The life expectancy is 41 which really means only half the people living with CF will live to this age and the median age of death is only 27 (Rebecca's age)

In people with cystic fibrosis the lungs make thicker sputum (mucus) than normal, which can trap bacteria in the small airways and lead to infection. Symptoms that typically develop include persistent cough, wheezing, shortness of breath and breathing difficulties and repeated chest infections. Thickened mucus can also cause problems in the pancreas and food cannot be digested or absorbed properly, in particular fatty foods. This can cause malnutrition leading to poor growth and poor weight gain, bloated abdomen and tummy aches, constipation and prolonged diarrhoea. Other symptoms can include sinus infections, and nasal polyps. Some adults with cystic fibrosis may also get cystic fibrosis related diabetes, arthritis, osteoporosis, kidney and liver problems.

Cystic fibrosis affects everyone differently, but for many it involves a rigorous daily treatment regime including physiotherapy, oral, nebulised and intravenous antibiotics, and taking enzyme tablets with food. Some people with cystic fibrosis will have a feeding tube overnight to help them gain weight. For those who are very ill with cystic fibrosis and with very poor lung function; daily life can be a struggle as basic tasks can leave them breathless. Some patients use a wheelchair to get around, and use oxygen to help them breathe and eventually need a double lung transplant to survive.

Life revolves around hospital appointments, admissions and treatments.

From our experience with CF, most of the above affected Rebecca and if that wasn't enough, she also had a few other more personal symptoms thrown in as well. From an early age she learned to live with the hospital appointments and in later years frequent hospital admissions, but as ever, she just got on with it. She  managed to build her life around CF not letting it define her and she lived life to the maximum she could. Unfortunately, CF eventually got the better of her and she lost the fight but not before she gave it her best shot. Rebecca died at 27 and the majority of deaths from CF that I hear about are in this age range and even younger. It's a horrible illness that impacts so much on the person with CF and their family, too much to go into on here and I simply hate the fact that no cure has yet been found.

When I ask for people to sponsor me or donate it's because since having and losing Rebecca our life has changed completely, it's gone from happiness and living in hope to complete sorrow and devastation. The sooner it's cured the better then other youngsters who are born with CF won't have to live with the illness and their families won't have to deal with losing a child.

So friends, family and public please visit my just giving page and sponsor me and my friends in our quest to find a cure for Cystic Fibrosis.

https://www.justgiving.com/account/your-pages/Sue-Marley-MBE3

If you can't open the link, please see link at top right of page

As always thank you for taking the time to read.
Bye for now
Sue x

Sunday 6th March - Mothering Sunday

This morning when I got up I felt really sad because even though I've been a mother, I don't have anyone to mother anymore and that's really hard to come to terms with. But, whilst walking Jess, (Becci's dog) I had a really good talk to myself and decided I have a lot to be thankful for.
I have the knowledge that I brought the most lovely person into this world and had the pleasure of knowing and enjoying her for 27 years 7 months 2days. Rebecca was a really easy girl to love, so caring, generous and loving. She was brave, tough, funny, to me inspiring and also very annoying and I feel extremely privileged to have had her in my life. It wasn't a long time and I still struggle without her, but I will be forever grateful to have had the experience of being her mother. 


I've included a few photos which show her love of life and
 zest for enjoyment :)

 
On the fund raising front there's not too much happening at the moment.
I'm busy training for the triathlon on 12th June, have got back into running  and funnily enough I'm enjoying it. I've been swimming quite a few times but have yet to get my bike out. I've got another 3 months for training but it's surprising how time flies by and before I know it, it'll be 12th June. It's alright doing the swimming, cycling and swimming but I'm going to have to put them all together before long and see just how hard it's going to be.
There's a small team of us doing this in Becci's memory her friends and mine and I'm really touched that they've wanted to shell out so much money and time to do this. It's nice for me to see because it makes me realise that she was well thought about :)
I'll be sharing Team Becci's just giving page on FB and twitter shortly.,
Team Becci :- Me, Rachel Edwards, Maggie Jewitt,
Clare Merrick, Emma McMichael and Paula Craven

The cricket match is still up in the air as Emmerdale can't come on 29th May so we're waiting for more dates so watch this space.......
 
As always thank you for taking the time to read.

 Tara for now
 Sue X

Sunday 3/1/16
It's a new year already
  
It's been a while since I updated because really there hasn't been a lot going on apart from organising Becci's Christmas raffle and Christmas itself.
 
I'll get the worst out of the way which is Christmas.
I decided this year I would try a bit harder to be a bit more involved and hopefully this would bring more enjoyment. I organised the works Christmas do, bought a Christmas jumper, bought more presents instead of just giving money, put tinsel round my computer at work and put nice Christmassy things up at home. All that went OK but getting through Christmas itself was horrible, not just for me, but Paul as well. It hit us both hard and it seemed this year to be worse than recent ones, don't ask me why because I can't give an answer. Christmas is a time for happiness, having fun and sharing it with your family. For us now, that doesn't exist and as much as people say, enjoy yourself Rebecca would want you to, she'll be with you, the plain fact is, she isn't here and never will be again and the day she died, so did our little family and with it, everything Rebecca gave us. It's times like these where I wish we had chosen to have another child, not because it would replace Rebecca, but we would still have the family we so desperately miss. Rebecca was only a small girl in terms of stature but she was such a big presence in so many ways and the hole she has left is enormous. Losing a child and even worse an only child is the ultimate torture a person will ever have to deal with but as with every loss, people expect you to recover. Because of this expectation which is probably misplaced, I feel I have to try to deal with times like Christmas better each year but after this year, I've come to the conclusion that Christmas is just another one of those times that we will never really get to grips with and may have to find some other way through it, our way. By that I mean that we may embrace it or choose to ignore it, either way, whilst ever our mother's are still with us, we'll make sure we share some of it with them.
 
That's all I'm going to say about it apart from saying that actually putting those thoughts down do help me get some order in my head and allow me to see how to go forward. :)
 
Becci's Christmas raffle took place at The Angel Ackworth on 16th December and raised £1227.00. I have to pay tribute to our family and friends who once again took tickets to sell for us and in particular my sister in law Jill Liversidge who sold 200 at Argos Altofts and Marc and Geogina Hodgson who also sold 200 to their family and friends. Thank you once again to Dean and Julie landlords of the Angel for allowing us to hold the raffle there and pester their customers on the night
A massive thank you to all who supported Becci's fund.
 In addition we also had donations from:-
Joe Atha, Dean and Julie who have sold sweets for the last few months at the pub. Joe asked for our charity to receive the proceeds.
My friend Julia Yardley who gave me a donation from her work colleagues at Rotherham JCP.
My friends at work who saved loose change, bought my Mum's cakes and gave money instead of Christmas cards.
Last but not least Dean at the Angel won the hamper, gave it back for us to auction and a very generous chap bought it for £60.
In total we raised a total of £1474.50 and this took our total to a whopping £40,100.50, so we hit the target with months to go. Looks like we'll now have to change the target to £50.000.00

Next up in the fund raising will be Ackworth Cricket match which will be different this year because John Atha who we've been privileged to do it with for the last seven years, has hung up his microphone and retired. Our friend Marc Hodgson who has been part of Becci's team for the last few years has agreed to take over and be in charge of the microphone. I'll update more about this as  we go along.

In addition there's a Triathlon on 12th June to train for and I'll have to get started soon because as we all know, time has an habit of catching up with you and I'm not getting any younger to be taking on physical challenges. I wouldn't be taking part in the Triathlon without the support of mine and Becci's friends who readily agreed to join me and form Becci's team and raise some more money in her memory for cystic fibrosis. So Maggie Jewitt, Rachel Edwards, Clare Merrick, Emma McMichael and Paula Craven thank you ladies for taking up the challenge. A point to note, I'm 60 in 2017 so I'll be thinking of a special challenge and you'll all be first on my list to ask. :)

Over Christmas I picked up a horrendous cold and have ended up with a chest infection and on antibiotics. All I can say is, it has made me realise first hand how hard it must have been for Rebecca who had to get through most days with a tight chest and constant antibiotics and for people now with CF who have to live with this daily and the most of whom, never moan. I'm fed up with it after 9 days but the difference is, my discomfort will disappear and I'll get better with no after effects. Unfortunately this isn't the case for people with CF,they have to put up with it forever plus all the other debilitating effects of CF and that to me is a daunting prospect but one I don't have to face.
I really wish the CF Trust would do some hard hitting awareness on the TV of what it's like living with CF on a daily basis. Show good and bad, but get it in the public eye, make the public aware of what a horrible illness it is to live with!!!!!!!!!!!!!!!!!!!

There have been a lot of young people lost to CF this year, all taken too soon, one young man I knew personally and was really shocked and upset to hear of his passing. RIP Josh.

So, into 2016 and we'll continue raising money in our quest to find a cure for cystic fibrosis and hopefully this may be the year that CF stands for CURE FOUND.

To anyone reading this I'd like to wish you good health, wealth and lots of happiness for 2016.

As always, thank you for reading.

Cheerio for now

Sue x



 

 

Sunday 8th November

A little tribute

Today isn't a good day.
Rebecca would have been 34 today and I'm finding that more and more each year, her birthday is the worst day to get through so I thought I would keep busy with one or two things including an update of my blog.
Rebecca made her entrance into the world at 9.55pm on a Sunday and what a tiny little thing she was weighing in at 5lbs 14oz. Life with her or for her wasn't easy to start with because what we didn't know, was that cystic fibrosis was lurking and causing her problems. Little did we know the extent of how her life would be shaped because of cystic fibrosis. But, I'm not going to dwell on that because to be honest my lovely girl never dwelled on it, so I'm not going to let her down by wallowing. Suffice it to say, other than in the last few months when she had no choice, she didn't let CF stop her doing anything she wanted to, she really did ignore it where she could. She was a lazy little bugger, I've never met anyone who could sleep like her and a vacuum, duster or an iron were foreign words. But if there was a holiday, a night out, a trip off or a hen weekend to be going on, she found some energy from somewhere and was probably organising it before you could say Malibu and Coke. I'm sure some of you reading this will know what I mean.
Here's a some photos of her in various places, with friends and family,always having fun.

HAPPY BIRTHDAY MY LOVELY, I MISS YOU EVERY SINGLE DAY, LOVE YOU  TO THE ENDS OF THE EARTH AND BACK.

You might have noticed I've added a couple of things to the blog:-
A fundraising thermometer which shows just how much you lovely people have helped us raise for Cystic Fibrosis. Thought it would be nice for you to see that.

A link to the CF website,

More importantly though, a link to the donor registration site where you can sign up in seconds to donate your organs. They're no good to you when you can no longer use them so why not give someone else another chance of life. After being in the position of seeing Rebecca's only hope of life being a lung transplant, we know what it's like to feel that desperation. It didn't work out for Rebecca but there are a lot of young people with CF who are eligible for a transplant and without donors, they'll never get that chance to breathe normally and live life again. 

I have also got a challenge for 2016 sorted out.

http://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0CCAQFjAAahUKEwid_fqos4HJAhUFYw8KHTyBBtE&url=http%3A%2F%2Fleeds.triathlon.org%2F&usg=AFQjCNEOcdFG84tgd3xTaWkcOJpjyIrBUQ&sig2=5m7rMnEfDyqydH_JJggPiA

On Sunday 12th June 2016 TEAM BECCI will be taking part in a Triathlon at Roundhay Park Leeds.
I am joined for this challenge by my long time fundraising partner Maggie Jewitt who only ever says no when there's heights involved, she's a star. I'm also joined by Rachel Edwards (Storey) who has known Rebecca since they were little and mine and Rebecca's friends from work, Emma McMichael, Clare Merrick and Paula Craven. 
Thank you all for taking up the challenge and I hope you realise Rebecca will be there with us but more than likely sitting on someone's shoulder, why swim/cycle/run when you can cadge a lift. :)

Of course there will be a just giving site and sponsor forms eventually so watch out for those.

I've managed to keep busy with important work, i.e. registering TEAM BECCI for our 2016 CHALLENGE so today hasn't been too bad.

 As always, thanks for taking the time to read my blog.
Tara for now
Sue x

  

7th September

Feeling low

Today's post isn't very positive so be warned, I'm using it to work my way through a very low period in the hope it will help. I get up every morning and go about my day functioning but behind the façade I just feel so sad. It's just the way it is and something that keeps happening and I try not to beat myself up about it when it happens, I have to accept that this is how it is and do what I can to get through it. 

For the last few weeks I've felt like I'm in a massive hole with steep slippery sides and choose how much I try to climb out, I just slip back down. It's frustrating and extremely tiring. 

For some reason everything in life seems so much harder to deal with at the moment and I'm forever close to tears. I'm constantly being over whelmed with wanting to see, speak and hug Rebecca and even though I know it's impossible and it's never going to happen, my heart just keeps wanting it to. It's such a long time since I saw her and as time goes on this seems to get worse. My heart really does rule at the moment.

I've been out with my family a couple of times recently and I love it when we get together even though I always find it a bit difficult because Rebecca's not there. I always make an effort to enjoy myself because I love spending time with them, especially my three nieces and it's lovely to be with them. In fact we had a lot of fun on Friday at Kayleigh's surprise 30th birthday party, I even made a fool of myself dancing with Brogan and Lynda, so even though I feel down, I do still enjoy myself. The trouble is at the moment my heart just aches for Rebecca and it isn't going away. Grief even six years on still hits me like a sledge hammer and it does physically hurts.
 
When you lose an only child you not only lose them and everything they were to you in your life, but you lose the future that goes with that child and for me, that is taking some getting used to. I wasn't too bothered about Grandchildren when Rebecca was here because I didn't want her to risk her health by having a child and I just wanted her to have a longer life and be with me until she was so much older. Now I feel cheated because I've haven't got her, I'll never have a grandchild and she didn't get to live a longer life. Don't get me wrong, she lived her short life to the fullest she could and had a whale of a time doing it and as much as I try to think about the memories she created and not be sad, when I feel like this, sometimes they make it worse because it just hurts so much knowing I won't enjoy any more with her. I know in a few days/weeks this awfulness will pass and I'll feel strong again and I'll be able to appreciate all my memories but for now I'll just deal with the sorrow the best I can. 
 
At the moment being at work is the best place I can be because it keeps me focused on other things and I do work with some very caring people. Most people I work with also worked with Rebecca and they are happy to talk about and remember her with me. On days like today when I'm weepy they just let me babble on and give me a cuddle and it's so good to be able to do this without any embarrassment on either part. Thank you

I'm not sure what triggers these down days or even if anything does because there's always poignant dates/days and get togethers throughout the year. I don't want people to feel sorry for me because I'm sure I'm not on my own, there are other parents going through the same thing, this is my way of trying to work through my emotions and explain how I'm feeling. Hopefully it may help someone feeling the same and let them know they're not on their own and it's normal.
So for now I'll just try to accept it for what it is, a normal day in the life of a grieving parent.

As always thank you for reading. Sue x

PS One really bright day in recent weeks was a visit to Yorkshire Wildlife park with our niece Elosie which we enjoyed thoroughly although I think we were a bit rusty with taking out a 6 year old. She was a joy and made our day. xx

Saturday 1st August

Another month gone!

I thought I'd write a little update though there's not much for me to say really.

I was a little upset a couple of weeks ago to find there had been some thefts in the cemetery and the solar lights me and my mum had put on Rebecca and my Dad's grave had been nicked. Can't do much about it I know but it's a shame people can't have more respect. Sadly I suppose, it's a sign of the world we now live in.

I think about and miss Bec every single day and at least once a week I still think she's just out somewhere and get a stab of pain when I realise she isn't. The pain isn't as bad as it used to be though and it's better to cope with although that's usually dependant on how strong I am at the time. At the minute I'm quite strong so coping OK but losing my child, my only child changed me and my life isn't and never will be the same choose what I do.

I'm a bit out of sorts with the Cystic Fibrosis Trust at the minute and have decided to not do any media work for the moment. This came about when I wrote a story for someone's fundraising event and was told I couldn't include the median age of death for someone with CF as 27. Each story I write includes information/facts about CF for the papers to use if they choose to in the hope it raises awareness and support. When I queried why I couldn't include this, I was told it isn't what the trust wish to portray and it annoyed me because although the life expectancy is now 41, the median age of death is in the twenties and until a cure is found, young people will still lose the battle against this bloody illness. Anyone who watched Great Ormond Street hospital a couple of weeks ago will have seen three kids with CF aged between 11 - 14 who all had lung transplants. They hadn't a hope of reaching the life expectancy without a transplant!!

I feel strongly that in order get CF into the limelight, raise awareness and support, the facts about this life threatening illness needs to be as hard hitting as possible and as a far as I'm concerned, this can be done along side the positives and successes.
I fully understand the need to be positive, as a parent whose lived with the worry, anxiety, trauma, trials and tribulations of CF I was always looking for the positives and hope of a cure, but I was also realistic enough to know that sometimes the bad things have to be shown to make people notice. Watch any other charity advert, you'll see what I mean. That's another thing that bugs me, there's never any adverts about CF and any media coverage is usually about a young person needing a lung transplant and the main focus there is for organ donation and a little bit about CF.
More needs to be done to raise the profile of CF.

Anyway, rant over. I've spoken with the trust and been assured there are some changes afoot about how CF is portrayed so I haven't hung up my pencil just yet, just put it in my pencil case for a couple of months. :)

Fund raising will still be on my agenda though. 

On a less serious issue, I'm impatiently waiting for my hair to grow and even though it is, it's not fast enough for my liking. I'm bored so I've had it coloured blondish, of course Paul thinks it looks horrible but that's par for the course with him, he never likes anything I have done. I've never been this colour before so it was a shock when I looked in the mirror but not as much as having it shaved!!

On that note I'll say bye for now and as always, thanks for reading.

Sue x