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

27th June 2015

CATCH UP

These past few weeks since Rebecca's anniversary it's been a bit manic trying to get everything sorted for the cricket match. To say there's been a few ups and downs this year is a bit of an understatement and my enthusiasm for fund raising definitely took a knock and I have quite a few times seriously considered packing it in. The loss of more young people to CF this week is what's made me rethink and that giving up is not an option. Without fund raising, a cure won't be found and more young people will be lost and more families will be  devastated by that loss. Having endured losing my only child and still continue to deal with that loss, I can't turn my back on the thing that may one day make CF stand for CURE FOUND. So for now, with the support of Paul, Jill and our family's and friends It's business as usual. That brings me nicely on to :-

CRICKET MATCH

This year even though we had to contend with showery and cool weather, father's day, Pontefract races, reduced numbers helping and not as many people coming, we still had a great day and raised £2457. If you came and have also been in previous years, you'll know what I'm talking about with reduced numbers. You'll also realise that we were very generously supported by the people who did come and for that we are extremely grateful. I've put a few pictures below.

 

 HEAD SHAVE

Well I did it and I've got to say It wasn't as bad as I expected. I didn't shed a tear but one or two of my family and friends did. Many people have said I'm brave for doing it but I don't think it's brave, crackers maybe, but not particularly brave. It didn't hurt, I didn't do anything physically myself, It didn't take any effort once I'd decided to do it, someone else shaved it off for me. The only doubts I had was about my looks and in the grand scheme of things that's not much because lets face it, in a couple of months it will have started growing back and I'll look like my old self again.
I consider brave to be kids like Rebecca with cystic fibrosis who on a daily basis face the constant challenge of living with this dam illness. They live their whole life having to organise every single day around CF with the knowledge that choose how compliant in treatments they are, in all likelihood they will have a short life. The amazing thing about Kids like Rebecca is that they do not let CF define them, they just get on with it, meet it head on and then live life to the fullest they can and enjoy every minute.

That to me is brave.

Here's a few photos

 

 

 

 

Hopefully with just giving and offline sponsors I'll manage to raise £450 for the head shave, this of course can be boosted by following the link below :) 

 http://www.justgiving.com/Sue-Marley-MBE2


It's on a sad note that I finish my blog, On Tuesday I found out that Josh Woodlock who was 19 and waiting for a double lung transplant had lost his battle with CF and had passed away in his sleep. Josh even though really ill had made a big effort to come and support the cricket match. He along with his older brother Adam who also has CF and plays for the CF team and his family have been there supporting us for the last several years. I was so sorry to hear the news and having only spoken to Josh a few days earlier was stunned. My thoughts at the moment are constantly with his mum and dad and all his family as they try to come to terms with what has happened. RIP Josh breathe easy.

Thank you for taking the time to read my blog
Sue x

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10/6/15

Anniversary 

Today it's six years since we lost Rebecca and I can say with absolute honesty this day doesn't get easier. Mothers day and Christmas are better and on a daily basis I'm mainly OK, but her birthday and today are getting harder. It's simply that one was the most joyous day (but no longer is) and the other was and still is, the most tortuous day of my life. One brought joy, happiness and a future, the other brought heartache, devastation and utter sorrow. As much as I try not to, I can't help reliving the week leading up to losing Rebecca, wishing I'd seen it coming and been able to change things. Trouble is, choose how often I relive it, it won't change and I'm still in the same horrible place wondering why my precious daughter had to have cystic fibrosis inflicted on her.

I miss her so much, she was my best friend. I miss her infectious and loud laugh, her temper, her laziness, her sunny personality and sense of fun, her sense of humour, her saying the daftest things, her shouting, her  untidiness, her love of life and her attitude of getting the absolute maximum of happiness and enjoyment out of what she knew would be a short life.
Life for her wasn't easy because of what she had to endure with CF but she made the best of it. There were no tantrums and feeling sorry for herself, no "why does it have to be me". She loved her holidays and going out and although she was always tapping money off me, she always worked hard and didn't use CF as an excuse to get a free ride. She had an art of getting people to do things for her without them realising it and in some cases like her Granma and Anne Richards, paying as well. She wasn't a angel, though she is now, but she was my very wonderful only child and I love and miss her so much it physically hurts.


 Losing Rebecca left an enormous hole in my life and choose how I try to fill it, it never gets any fuller and I don't think it ever will. As a mother I'm no longer needed, so I'll take a leaf out of her book, when she had a bad coughing fit you could hear her muttering "enough now" so I'll pull myself round again and crack on. I will continue with my fund raising to try and help find a cure for CF in the hope other mothers won't have to live with the devastation losing a child brings to your life.
 This brings me nicely on to my fund raising events:-

On 21st June at Ackworth cricket club Wakefield road Ackworth we are having a charity cricket match ana family fun day. It starts at 12 and there will be a bouncy castle ,tombola, other games, bar, free entry and a rodeo bull.

I'm also having my head shaved on the day as well which should be fun!!! If you would like to sponsor me for this scary challenge please visit my just giving website on the link below.

  https://www.justgiving.com/account/your-pages/Sue-Marley-MBE2

I have set up a new blog for our fund raising which I will share with you shortly, the first post will be a long one as I'm covering a long period of time but subsequent ones will be shorter - promise.
As always, thank you for taking the time to read. x

Sunday 17th May

Cystic Fibrosis month, charity cricket match and head shave looming !!!

I thought I'd start by raising a bit of awareness as it's cystic fibrosis month. I want to emphasise that what I write below is my own experience of CF and no two people are the same, some are affected worse than others. I don't in any way want to upset anyone but I am trying to raise awareness of the illness so that when people hear cystic fibrosis they may remember this and make a donation. This is the only way CF will ever stand for cure found.

Statistically, each week five babies are born with CF and two young lives are lost to the illness. The median life expectancy is now 41 although when Rebecca was born it was teenage years, so good progress has been made, however, only HALF of those people suffering with CF will live to that age.

Cystic fibrosis is a lifelong illness that affects mainly the lungs and digestive system but in reality because of the constant treatment required to keep it stable, it actually can impact on the whole of the body. I know from Rebecca, she had gall stones, her kidney's played up, she had starting's of osteoporosis, her bowels gave her problems and she was always being checked for CF related diabetes. She suffered with clubbed fingers, was hunched over through coughing, had a barrel chest and her hair came out in handfuls, not necessarily life threatening but can have an affect on appearance and confidence. Add into that having to deal with constant hospital admissions, appointments, intravenous antibiotics and the knowledge you will more than likely only have a short life. All this becomes part of a life where even though you want to pack as much as you can into this short life,  you have to deal with constant disappointments because CF interferes with your social and working life. Really there is no normal life just the best you can make it. As a family you just get on with it deal with whatever is thrown at you and live in the hope of a cure or as is happening now, better treatments are coming along. It's a constant battle over a long time and is at times extremely hard to deal with.

Until a cure is found lung transplant is the main hope of extending life but unfortunately, not everyone is eligible nor does it always work. For that reason we must push forward to raise money and awareness to find a cure and allow approximately 9000 people with CF in the UK live a LONG normal life. 

Having said all this I wouldn't have missed the time I had with Rebecca, it was wonderful, a rollercoaster and at times I think we were all close to going over the edge, but if CF did anything good, it gave us the closest, most amazing relationship any mother could wish for. I loved Rebecca with every beat of my heart and still do and I have a note which she wrote in the last months of her life that told me and Paul just how much she loved us. She was a special girl who through her own determination didn't let CF spoil her life too much until she had no choice and then and only then, did she let it win.

So, onto fundraising, here's my just giving site  https://www.justgiving.com/Sue-Marley-MBE2

On here you'll see I'm having my head shaved at the annual charity cricket match on Sunday 21st June. Please visit and donate if you can and come along to the cricket match at Ackworth cricket club, Wakefield Road Ackworth, it's a great day and hopefully we'll raise hundreds of pounds for CF all in memory of my lovely girl.

I'm a bit up and down at the moment as Rebecca's anniversary is coming but I've got the cricket match to focus on and the head shave to worry about so hopefully that will see me through.

Bye for now and as always, thank you for taking the time to read my blog :)
Sue x

Sunday 15th March - Mothering Sunday

It's probably a good day to write a blog seeing as I use this for getting my thoughts and feelings out and it helps to write them down, it allows me to make sense of them I think.

I'd be lying if I said it wasn't a difficult day because of all the hype it gets but really it's no more difficult than any other day, It's just advertised more I suppose.

I truly miss being a mother so much, but I miss it every waking hour not just once a year. I've said this before, I feel like part of me is missing and I don't think I'll ever feel whole again. It's like I've been sacked from the most important and most fulfilling job anyone could ever have and choose what steps I take, I can't be reinstated.

I wouldn't even say I was a very maternal sort of person, I only ever wanted one child so I was more than happy with my lot when Rebecca was born. I was so overwhelmed with the love I felt for her when she was born and that just grew as days passed. When Cystic Fibrosis was diagnosed at three months, my love and need to protect her just deepened and continued to do so until the day she passed away. Over the years the bond we had was unbreakable and although we had arguments, big arguments at times especially during her time with dickhead Dave (people who knew her know who I mean) but we always got over them and we never bore each other grudges. It was no picnic as she grew up and blossomed into an adult, we didn't always see eye to eye the same as for any mother daughter relationship but we never fell out for long. I remember us falling out once as she was going out somewhere in the car and when she came back we patched things up and we made a pact that day never to part like that again and we never did again, we always had a hug before she went through the door. Her illness was extremely hard to deal with for both of us but so much harder for her having to suffer it's horrible problems. Rebecca made life a lot easier by the way she just accepted and got on with it and mostly did everything that was asked of her even in the last months of her life, she really only put her foot down about the transplant issues.

I miss her so much, miss what we shared, miss what she gave me I even miss all the worrying. I miss our special friendship, our arguments, her asking advice, me being her Mum in a million. I'm thankful every day that I gave birth to her and that I had the chance to be her mother but nothing I think, say or feel will ever take away the pain of losing her and me never again being able to be her Mum.
I've written this, not because I feel sorry for myself but to tell the world I will be forever thankful for giving birth to, loving and being loved by my lovely, brave daughter Rebecca who gave me 27 years 7 months and two days of sheer pleasure. I'll leave these photographs of our togetherness.

We even threw ourselves from the Humber Bridge together and that took some doing for both of us.