15/12/13
Christmas is coming..............
For some reason after I wrote my last blog, I got up the next day and felt like I was back in the early days of losing Rebecca. I couldn't think her name without the tears flowing, I couldn't speak her name without the tears flowing, her last days in hospital just kept coming into my mind, they were heart breaking days but I just couldn't stop it. I don't know what caused it or brought it on, these things just seem to happen and I have to go with it until it's passed, fortunately it lasted for that day and the next day when I got up, I was stronger again.
One thing I know i'll never get used to is the feeling of not being complete, I don't feel whole anymore, part of me is missing and that stays with me wherever I am or whoever I am with. I was meant, we were meant to have our daughter with us until we died not the other way round. I don't say much about Paul and his feelings but I know he feels it as well, when we talk about her I can see the pain in his eyes. He tries to stay strong for me the way he did when Bec was here, he's my rock, that's probably why i'm not quite as off my trolley as I would be if he wasn't here to prop me up. So when you read this Paul because I know you will, thank you for keeping me sane.
Anyway after that little blip passed I've kept busy with Becci's Christmas raffle which was drawn on 11th December. It was a great success and many thanks to everyone who sold tickets for us, we raised another £1288.00, fundraising page has been updated with a little photo.
I've put a few decorations up this year for two reasons really, 1) It didn't work last year not having any, it was still hard to get through and B) I saw a medium in January and the first thing he said to me was " you've had a very morose Christmas and you have got to stop it and get on with life". I know that was my Dad talking because it's a word he would use and he'd also have been telling me off. So I've listened and tried harder and to be fair at the present moment in time, i'm not doing too bad.
I went on my works Christmas do on Friday and I had a really good time, I thoroughly enjoyed myself but I did miss Bec. She would have been with us if she'd been here and I was sad that she wasn't out there on the dance floor with all the other young people but after a little chat with Bec's friend Emma, I felt better. It was a really good night and the next day I didn't have a hangover, Bec would be proud of me for that because I usually end up staying in bed all day after drinking a lot, it's true i'm not a light weight any more:)
I know Christmas day will be as hard as it's ever been but i'll get through it like I have the last four with the support of family and friends. I'm going to take each day as it comes but i'm looking forward to going out on Boxing day which is progress and hopefully we might get to a race meeting as well over the holidays, so I am trying to look forward. .
Then it will be a new year and new goals especially in the fund raising, i'll need to get one or two bits waxed, legs, armpits etc:) so as not to scare any of the people when I hit the swimming baths - Lake Windermere here I come!!!! Then a walk from Scarborough to Whitby and the cricket match hopefully, so loads to focus on for 2014 oh and i'm also picking up the trainers in the new year for a bit of running that is likely to turn into the great north run in 2015.
I'll post again after Christmas and to anyone reading this I hope you have a great Christmas and 2014 is a healthy and prosperous new year for you. xx
Sunday, 15 December 2013
Sunday, 1 December 2013
1/12/2013
Feeling stronger
The last time I posted was Rebecca's birthday and to say I wasn't good is an understatement but fortunately since then I've picked up and am writing this in a stronger state of mind. Hopefully, this will get me through the next few weeks and this Christmas I'll be better than last.
I've few things to say so please read on:-
Raffle tickets for Becci's Christmas raffle are going well and a big thank you to everyone whose come on board and helped out to sell them. A massive thank you to my Mum for giving us some dosh towards buying the star prize, an Apple iPad and also to Pau's Mum for donating one of the other eleven prizes.
I've updated the page about living with CF and I'd appreciate it if you would read what I've said because it's about how CF affects the body other than the lungs and gut. It's something I need to push because I don't think the general public is aware of what a devastating illness this is and how horrible it is to live with. Another aspect is the emotions young people like Rebecca must go through living with the knowledge that unless CF is cured, without a lung transplant, your life expectancy is late 30's. This doesn't seem to bad when you're 6 but when you get to 25 late 30's isn't that far away and I know from being a mother to someone with CF, when Rebecca got in to her teens, it prayed on my mind an awful lot even though it maybe didn't show. Plus CF can become very difficult to treat very quickly and in a lot of cases, as with Rebecca, the body doesn't respond as well as it's hoped and the downward spiral begins.
On a brighter note, my lovely niece Lynda is expecting another baby and her due date is 10th June 2014. If the baby is born on Rebecca's anniversary it will give me something nice to think about on that day and I'm sure she'll be pleased about the date as well.
On another brighter note, I've got a challenge for next June. To mark Rebecca's anniversary I've decided to stay on the ground this time and do the Great North Swim - 2 miles in Lake Windermere. It's not booked as yet but it will be by the new year.
If my kid could live with CF I'm sure I can do this, of course I can't do it for nothing so be warned, I'll be around with my sponsor sheet again:)
Don't forget as well, anyone that reads this that knew Rebecca, if you have any memories of her (good or naughty) and you want to share them, please let me know and I'll include them on the page about Rebecca.
As always, thank you for reading and Toodlepip for now. X
Feeling stronger
The last time I posted was Rebecca's birthday and to say I wasn't good is an understatement but fortunately since then I've picked up and am writing this in a stronger state of mind. Hopefully, this will get me through the next few weeks and this Christmas I'll be better than last.
I've few things to say so please read on:-
Raffle tickets for Becci's Christmas raffle are going well and a big thank you to everyone whose come on board and helped out to sell them. A massive thank you to my Mum for giving us some dosh towards buying the star prize, an Apple iPad and also to Pau's Mum for donating one of the other eleven prizes.
I've updated the page about living with CF and I'd appreciate it if you would read what I've said because it's about how CF affects the body other than the lungs and gut. It's something I need to push because I don't think the general public is aware of what a devastating illness this is and how horrible it is to live with. Another aspect is the emotions young people like Rebecca must go through living with the knowledge that unless CF is cured, without a lung transplant, your life expectancy is late 30's. This doesn't seem to bad when you're 6 but when you get to 25 late 30's isn't that far away and I know from being a mother to someone with CF, when Rebecca got in to her teens, it prayed on my mind an awful lot even though it maybe didn't show. Plus CF can become very difficult to treat very quickly and in a lot of cases, as with Rebecca, the body doesn't respond as well as it's hoped and the downward spiral begins.
On a brighter note, my lovely niece Lynda is expecting another baby and her due date is 10th June 2014. If the baby is born on Rebecca's anniversary it will give me something nice to think about on that day and I'm sure she'll be pleased about the date as well.
On another brighter note, I've got a challenge for next June. To mark Rebecca's anniversary I've decided to stay on the ground this time and do the Great North Swim - 2 miles in Lake Windermere. It's not booked as yet but it will be by the new year.
If my kid could live with CF I'm sure I can do this, of course I can't do it for nothing so be warned, I'll be around with my sponsor sheet again:)
Don't forget as well, anyone that reads this that knew Rebecca, if you have any memories of her (good or naughty) and you want to share them, please let me know and I'll include them on the page about Rebecca.
As always, thank you for reading and Toodlepip for now. X
Friday, 8 November 2013
Thankful but very sad
Well today would have been Rebecca's 32nd birthday and this is the 5th one I've spent without her.
This morning I walked Jess and cried all the way round on our walk even when I was out of the fields and back on the pavements. If anyone saw me god knows what they would have thought but I don't care really, I needed to do it. I miss Bec every single day with every single fibre of my being but these special days are the worst. Her birthday was something she enjoyed so much and I enjoyed it because she did, she loved getting cards and presents especially surprises and they didn't have to be big things either, she got as much pleasure whether they were big or small. She used to get as much pleasure out of giving presents as well as receiving them. Oh yes we spoilt her, we definitely did, but she was never a brat and always appreciated what she was given.
Although I am in a bit of a state I am also very thankful that I can write these things because even though she's no longer with me I did have her for 27 years 7months 2 days and that keeps me going. I have my memories that I can draw on and other people's memories and although some days the memories work against me by upsetting me terribly and make me want her back with me, I will always have them and I along with everyone else can remember her.
She was a very special young lady ( I use the term lady very loosely, those of you who knew her will understand that) and I love her and miss her and although I cope mostly, these special dates aren't getting any easier.
But on a more positive note I would like to ask if anyone who knew her would like to share your memories of her with me and let me include it on Rebecca's page as a tribute to her.
I've got the following one from Jill, her aunty and best friend and it's fitting hers is the first to be included.
Jill says" First time I took her out we started at Rising Sun with girls from work. She drank everything anyone left on the table and every time someone went to the bar and had a different drink she asked to try it to see which drink she liked best. I created a party animal that night."
I hope you'll be able to share some memories and I'll include photos as well if you can send them to me. xx
Well today would have been Rebecca's 32nd birthday and this is the 5th one I've spent without her.
This morning I walked Jess and cried all the way round on our walk even when I was out of the fields and back on the pavements. If anyone saw me god knows what they would have thought but I don't care really, I needed to do it. I miss Bec every single day with every single fibre of my being but these special days are the worst. Her birthday was something she enjoyed so much and I enjoyed it because she did, she loved getting cards and presents especially surprises and they didn't have to be big things either, she got as much pleasure whether they were big or small. She used to get as much pleasure out of giving presents as well as receiving them. Oh yes we spoilt her, we definitely did, but she was never a brat and always appreciated what she was given.
Although I am in a bit of a state I am also very thankful that I can write these things because even though she's no longer with me I did have her for 27 years 7months 2 days and that keeps me going. I have my memories that I can draw on and other people's memories and although some days the memories work against me by upsetting me terribly and make me want her back with me, I will always have them and I along with everyone else can remember her.
She was a very special young lady ( I use the term lady very loosely, those of you who knew her will understand that) and I love her and miss her and although I cope mostly, these special dates aren't getting any easier.
But on a more positive note I would like to ask if anyone who knew her would like to share your memories of her with me and let me include it on Rebecca's page as a tribute to her.
I've got the following one from Jill, her aunty and best friend and it's fitting hers is the first to be included.
Jill says" First time I took her out we started at Rising Sun with girls from work. She drank everything anyone left on the table and every time someone went to the bar and had a different drink she asked to try it to see which drink she liked best. I created a party animal that night."
I hope you'll be able to share some memories and I'll include photos as well if you can send them to me. xx
Sunday, 27 October 2013
Living in a well
At the moment I feel like I'm living in a well, I'm at the bottom and try as I might I can't seem to get to the top. These last few months have been hard, I miss Rebecca more and more, you'd think it would get easier as the days go by but it just doesn't, that enormous hole she left behind is still as big and it's never likely to change. Every day I wake up and every day I have to accept she's gone and every day it hurts. Sometimes it feels like a sledgehammer hitting me other days a mallet, however I describe it, it hurts like hell. I accepted a long time ago that there was no point analysing how I feel I just have to accept it but writing it down does help.
We've had the cricket match and I've decided to continue trying to get prizes for next year, just so I have stuff to do.
I'm in the middle of trying to organise a Christmas raffle so that's keeping me a little busier than I would be normally, but as soon as I stop, the emptiness closes in, I try to keep occupied but it's hard.
It will be her birthday soon and she'd be 32, I wonder what she would have been doing now. If she didn't have CF, she'd be having a fantastic life, if she still had CF without a transplant, she'd either still not be here or struggling to live, so what's the point of wondering.
Then we'll have Christmas which she loved and which we enjoyed through her. People will say, "you should try to enjoy it, she'd want you to" I know that, but have you tried enjoying something when the person that made it happy for you isn't here. It just doesn't work, that's not feeling sorry for myself, it's just a fact. People are just trying to help and get you to be positive but unless you've lost a child, you can't ever know what that devastation feels like.
I'm not looking forward to the next couple of months as you've probably gathered but as I've had to do over the last four and a bit years I'll just keep plodding along and taking every day as it comes and hope that a few good ones come along soon for a much needed boost before the "festive season"descends upon us.
I did say in my blog when I started I would be honest about things and that's what I'm doing, hopefully my next blog will be a bit more upbeat, I'll try my best.
I've also updated the fundraising page and the living with CF has had a bit more added.
Thank you for reading, XX
At the moment I feel like I'm living in a well, I'm at the bottom and try as I might I can't seem to get to the top. These last few months have been hard, I miss Rebecca more and more, you'd think it would get easier as the days go by but it just doesn't, that enormous hole she left behind is still as big and it's never likely to change. Every day I wake up and every day I have to accept she's gone and every day it hurts. Sometimes it feels like a sledgehammer hitting me other days a mallet, however I describe it, it hurts like hell. I accepted a long time ago that there was no point analysing how I feel I just have to accept it but writing it down does help.
We've had the cricket match and I've decided to continue trying to get prizes for next year, just so I have stuff to do.
I'm in the middle of trying to organise a Christmas raffle so that's keeping me a little busier than I would be normally, but as soon as I stop, the emptiness closes in, I try to keep occupied but it's hard.
It will be her birthday soon and she'd be 32, I wonder what she would have been doing now. If she didn't have CF, she'd be having a fantastic life, if she still had CF without a transplant, she'd either still not be here or struggling to live, so what's the point of wondering.
Then we'll have Christmas which she loved and which we enjoyed through her. People will say, "you should try to enjoy it, she'd want you to" I know that, but have you tried enjoying something when the person that made it happy for you isn't here. It just doesn't work, that's not feeling sorry for myself, it's just a fact. People are just trying to help and get you to be positive but unless you've lost a child, you can't ever know what that devastation feels like.
I'm not looking forward to the next couple of months as you've probably gathered but as I've had to do over the last four and a bit years I'll just keep plodding along and taking every day as it comes and hope that a few good ones come along soon for a much needed boost before the "festive season"descends upon us.
I did say in my blog when I started I would be honest about things and that's what I'm doing, hopefully my next blog will be a bit more upbeat, I'll try my best.
I've also updated the fundraising page and the living with CF has had a bit more added.
Thank you for reading, XX
Tuesday, 17 September 2013
Life can be hard at times.
Yesterday I went in the mobile phone shop to update my phone and it turned out the girl who dealt with me went to school with Rebecca. She noticed my email address (Bec's old one) and asked if I was Rebecca's Mum. I could tell from the way the conversation was going, she didn't know about Bec, so I had to tell her. It turned out she didn't even know she had CF and I just thought, she didn't know Bec very well. But as was pointed out to me, that was just how Bec liked it, she only told people close to her because she wanted to be Rebecca not Rebecca that girl with CF. It was hard having to tell her even 4 years 3 months and 6 days on and I was close to tears in the shop but I held it together and let it out at work.
Then today it's 3 years since my Dad passed away and even though i'm glad he's no longer suffering and he's with Rebecca, I miss him a lot. I can smile at the thought of them being together because i'm sure they'll be having some fun.
I think it must just be the time of the year because the last few weeks have been hard and I've found myself close to tears quite often. I've even had the feeling that i'm going to wake up from this nightmare and find Bec's still with me and I haven't felt like that for quite a while. It's bloody awful though when realisation hits and you have the face the fact that nothings changed and there's still that horrible emptiness.
One thing I do know though is that i'll get through this again, be ok for a while and build up some more strength ready for when the next blip arrives.
Tomorrow is another day:) X
Yesterday I went in the mobile phone shop to update my phone and it turned out the girl who dealt with me went to school with Rebecca. She noticed my email address (Bec's old one) and asked if I was Rebecca's Mum. I could tell from the way the conversation was going, she didn't know about Bec, so I had to tell her. It turned out she didn't even know she had CF and I just thought, she didn't know Bec very well. But as was pointed out to me, that was just how Bec liked it, she only told people close to her because she wanted to be Rebecca not Rebecca that girl with CF. It was hard having to tell her even 4 years 3 months and 6 days on and I was close to tears in the shop but I held it together and let it out at work.
Then today it's 3 years since my Dad passed away and even though i'm glad he's no longer suffering and he's with Rebecca, I miss him a lot. I can smile at the thought of them being together because i'm sure they'll be having some fun.
I think it must just be the time of the year because the last few weeks have been hard and I've found myself close to tears quite often. I've even had the feeling that i'm going to wake up from this nightmare and find Bec's still with me and I haven't felt like that for quite a while. It's bloody awful though when realisation hits and you have the face the fact that nothings changed and there's still that horrible emptiness.
One thing I do know though is that i'll get through this again, be ok for a while and build up some more strength ready for when the next blip arrives.
Tomorrow is another day:) X
Sunday, 25 August 2013
Not a good day
This post is a bit sad but I did say I would be honest about how I am feeling and trying to deal with life and it is my way of counselling myself, let it all out, no bottling it up.
Most days now I'm pretty much holding it together and then out of nowhere I'm close to tears. Don't ask me why, it just happens. I walk Rebecca's dog Jess (she bought her for Richard to get him through the bad days when she wasn't here anymore, but she stayed with us thank god) every day and during these walks I talk to her and my Dad and tell them what I'm doing, how I'm feeling what's going on in life. This morning I knew it was going to be a hard day when I had a few tears whilst gabbing to them. Then when coming away from the cemetery I felt my heart was breaking, why is she in there when she should be with me, it's a place for old people who've had their lives, not for a 27 year old with everything to live for.
Today I bloody hate CF, it's a horrible illness and only people who suffer and live with it know the true evilness of it.
Anyway I pulled myself together and got on with the day, had a birthday party to go too.
My niece's little girl Eloise Rebecca was 4 on Thursday and she was having a little party and a bouncy castle. Eloise was given this middle name after my Rebecca and it is such a lovely gesture, so thoughtful of Lynda and Ash I love them so much for doing that, don't think they realise how much it means to me. Well they will now if they read my blog:)
When Eloise was born I had to come to terms with knowing I'd never have grandchildren and initially it was difficult but I soon got used to it and I love it when I see her and see her change and grow, she's such a lovely little girl, a proper princess, Rebecca would have loved her. But today for some reason I found it really hard, I think it was the way I was feeling but it just hit home again how much I miss her and how much I'll miss out on her not being here. I never wanted Rebecca to have children because then she was here and I didn't want her to compromise her health for a baby, I just wanted her to be here for many more years. But now I'll never see Rebecca have her own children and grow with them and I'll never having another little person, a part of her I can dote on and spoil. I felt so sad and the tears weren't too far away. When I got home I just felt her loss so much, I just wanted to see her walk into the back garden or hear that little cough or dirty laugh that usually warned us she was coming. I just felt like my heart was being crushed. It's been a while since I felt like this and it may be a while before I feel like this again but the grief, hurt and devastation of losing a beloved child never ever goes away, it just lurks in the background and catches you out when you don't expect it.
I'm sure tomorrow will be different, we'll just see how it goes, I don't expect anything these days.
One thing that won't be different though is how much I miss Rebecca, my lovely sparkly beautiful fun loving kind generous bugger of a daughter who gave me so much in her short life. XXX (Only ever did 3 kisses for Bec)
Most days now I'm pretty much holding it together and then out of nowhere I'm close to tears. Don't ask me why, it just happens. I walk Rebecca's dog Jess (she bought her for Richard to get him through the bad days when she wasn't here anymore, but she stayed with us thank god) every day and during these walks I talk to her and my Dad and tell them what I'm doing, how I'm feeling what's going on in life. This morning I knew it was going to be a hard day when I had a few tears whilst gabbing to them. Then when coming away from the cemetery I felt my heart was breaking, why is she in there when she should be with me, it's a place for old people who've had their lives, not for a 27 year old with everything to live for.
Today I bloody hate CF, it's a horrible illness and only people who suffer and live with it know the true evilness of it.
Anyway I pulled myself together and got on with the day, had a birthday party to go too.
My niece's little girl Eloise Rebecca was 4 on Thursday and she was having a little party and a bouncy castle. Eloise was given this middle name after my Rebecca and it is such a lovely gesture, so thoughtful of Lynda and Ash I love them so much for doing that, don't think they realise how much it means to me. Well they will now if they read my blog:)
When Eloise was born I had to come to terms with knowing I'd never have grandchildren and initially it was difficult but I soon got used to it and I love it when I see her and see her change and grow, she's such a lovely little girl, a proper princess, Rebecca would have loved her. But today for some reason I found it really hard, I think it was the way I was feeling but it just hit home again how much I miss her and how much I'll miss out on her not being here. I never wanted Rebecca to have children because then she was here and I didn't want her to compromise her health for a baby, I just wanted her to be here for many more years. But now I'll never see Rebecca have her own children and grow with them and I'll never having another little person, a part of her I can dote on and spoil. I felt so sad and the tears weren't too far away. When I got home I just felt her loss so much, I just wanted to see her walk into the back garden or hear that little cough or dirty laugh that usually warned us she was coming. I just felt like my heart was being crushed. It's been a while since I felt like this and it may be a while before I feel like this again but the grief, hurt and devastation of losing a beloved child never ever goes away, it just lurks in the background and catches you out when you don't expect it.
I'm sure tomorrow will be different, we'll just see how it goes, I don't expect anything these days.
One thing that won't be different though is how much I miss Rebecca, my lovely sparkly beautiful fun loving kind generous bugger of a daughter who gave me so much in her short life. XXX (Only ever did 3 kisses for Bec)
Thursday, 8 August 2013
8/8/2013
Since Rebecca died I follow quite a few blogs of people with CF. If ever I thought about relaxing my fund raising, reading these would make me realise why I still do it even though my lovely lady isn't here to reap the benefit of a cure.
With this in mind I want to tell you about a young lady who is desperately ill at the moment.
Kirstie featured in a documentary two years ago - Love on the transplant list which was about her awaiting her transplant and getting married. She was very close to dying when she got her new lungs but she pulled through and after a tough recovery she got a second chance at life, I think she was 21 at the time.
Sadly after just over 2 years since her transplant Kirstie's new lung have gone into chronic rejection and she has just been told she needs another transplant. After initially being told she couldn't be re-listed, she has now been told she can. She is so poorly that she needs to get new lungs in a matter of weeks or she will be too ill to have them. She is now 23 and in her short life she has faced death twice in the a matter of two years.
This is the reason CF has to be cured, we know what it's like to watch your child die from this illness and it must be horrific for Kirstie and her family.
Please have a read at her blog she is one very brave young lady.
Please have a read at her blog she is one very brave young lady.
I've added a few more bits to the pages, so have a read and please pass it on and help raise awareness.
Tara for now Sue x
Saturday, 27 July 2013
Feeling a bit down and how it just comes out of the blue
Before i lost Rebecca i was a strong person who could take on board an awful lot of things and took a lot in my stride. Of course things used to build up and i'd get stressed and struggled to cope but i'd have a good talk with Paul and if i was particularly bad, i'd get referred for a few counselling sessions.
Now, i seem to have lost that strength, maybe because i don't need it for Rebecca anymore, i don't know,
This week i was OK, then something happened that i wasn't expecting, i was fine with it at first.
Then i cleared my late Dad's garage out and although some of the things i found made me smile, i felt like i was throwing him and his history in the bin or taking it to the car boot. I know it had to be done and Dad would say i was daft and to sell what i can for Bec's fund, it's no good to him any more, but it still upset me.
I was still alright at that point.
Then a booking i'd try to make for a surprise i was planning was knocked back, Paul warned me this might happen and normally i would have dealt with it, but it upset me.
After that i was in tears, i watched Emmerdale and watching them break the news of Gennie's death to Brenda (it's a TV show for God's sake) i was in tears, then on to Corrie and watched Hayley and Roy (another TV show for God's sake) deal with the cancer and i was in tears. I mean massive tears, i could have sobbed and since then anything I've thought about to do with Rebecca has brought tears.
Until these couple of things happened i was merrily getting on with life and keeping busy and then WHAM out of the blue i'm off kilter and for a couple of days i can't cope, I feel Rebecca's loss again as if it happened yesterday and wish i could be with her,
I do seem to have picked u a bit quicker this time though and i'm OK again but one thing I've learned is to take every day as it comes and don't expect to much of yourself, grief and the aftermath of losing someone especially your child is unpredictable and the only way to deal with it is in YOUR OWN WAY.
I've put a few more bits on the other pages as well.
Thanks to anyone who has read this.
Tara for now
Sue x
Monday, 22 July 2013
Life After CF Without Rebecca and Trying To Get On With Life: How i sometimes feel about fundraisingA few week...
Life After CF Without Rebecca and Trying To Get On With Life: How i sometimes feel about fundraising
A few week...: How i sometimes feel about fundraising A few weeks ago we did Ackworth gala and had a Tombola stall to raise money for CF. I was upset bef...
A few week...: How i sometimes feel about fundraising A few weeks ago we did Ackworth gala and had a Tombola stall to raise money for CF. I was upset bef...
How i sometimes feel about fundraising
A few weeks ago we did Ackworth gala and had a Tombola stall to raise money for CF. I was upset before we went as i am most times i do anything because i know that Rebecca will never benefit from a cure, that sounds a bit selfish i suppose but i said i would be honest in my feelings.
As always someone came to us and said they had someone in the family with CF and that knowledge makes it easier, because i hope my loss will hopefully help other CF sufferers and their families. At previous Tombola sales we've had at least 3 people come to us that have lost children/young adults and then last Sunday we did a car boot sale at York and this time i spoke to two people who had friends that had lost sons to CF in recent years, one was 22, i'm not sure what age the other lad was. All these parents would be feeling as hollow and empty as i do and i know that is why i do what i do and that if a cure is found in my lifetime, Rebecca's death won't have been in vain. Becci's find a cure fund will keep her memory alive and that will help keep me going for a few years.
I've updated my blog and included quite a few photos. From now on any additions i make will be in a different colour so it will be obvious what i've updated.
The pages are quite long and i haven't finished the living with Cf page and i may add to Rebecca's page in the future. I hope you don't get bored reading my pages and you get an insight into my lovely kid and the bastard illness that took her away from her family much too soon.
Tara for now x
A few weeks ago we did Ackworth gala and had a Tombola stall to raise money for CF. I was upset before we went as i am most times i do anything because i know that Rebecca will never benefit from a cure, that sounds a bit selfish i suppose but i said i would be honest in my feelings.
As always someone came to us and said they had someone in the family with CF and that knowledge makes it easier, because i hope my loss will hopefully help other CF sufferers and their families. At previous Tombola sales we've had at least 3 people come to us that have lost children/young adults and then last Sunday we did a car boot sale at York and this time i spoke to two people who had friends that had lost sons to CF in recent years, one was 22, i'm not sure what age the other lad was. All these parents would be feeling as hollow and empty as i do and i know that is why i do what i do and that if a cure is found in my lifetime, Rebecca's death won't have been in vain. Becci's find a cure fund will keep her memory alive and that will help keep me going for a few years.
I've updated my blog and included quite a few photos. From now on any additions i make will be in a different colour so it will be obvious what i've updated.
The pages are quite long and i haven't finished the living with Cf page and i may add to Rebecca's page in the future. I hope you don't get bored reading my pages and you get an insight into my lovely kid and the bastard illness that took her away from her family much too soon.
Tara for now x
Monday, 24 June 2013
CF AWARENESS WEEK
I thought I'd post today as it's the first day in CF Awareness week in the UK.
CF is a genetically inherited and there are 5 babies diagnosed and two young people die every week from the illness. To suffer from CF both parents have to be carriers of the gene, or you could just inherit the gene and be a carrier yourself. Unless CF is known about in your family, it could pop up any time if two carriers meet, marry and have children. There is then a 1:25 chance in each pregnancy of the baby being affected by CF. If it's known in the family at least you can make an informed decision about having children. In our case, CF popped up in Rebecca and having looked back in the family, we could guess but only guess who may have had it.
I am eventually doing a tab on this blog about how CF affected us and what it was like for Rebecca and us to live with, so I've decided to let you read the blog below, which is from another person with CF who is currently using a new drug that's been developed and seems to be having a good effect on CF. Unfortunately, this drug can only treat 5% of the CF community which isn't a lot. This is the reason I pester you all to support my fund raising so that other drugs can be developed to treat ALL CF sufferers.
http://cocktailsandcreon.blogspot.com/
You will hopefully see some pictures in this blog of lungs as they deteriorate and you'll see how bad they look at 35% capacity, Rebecca lived with lungs at this percentage for probably the last 12 - 18 months of her life and believe me it was a struggle. So please have a read of the guest blog and spread the word whenever you can.
I have built the blog a little more so it's coming along but it will be a while before it's finished.
Thank you to anyone who has a read.
Tara for now XX
CF is a genetically inherited and there are 5 babies diagnosed and two young people die every week from the illness. To suffer from CF both parents have to be carriers of the gene, or you could just inherit the gene and be a carrier yourself. Unless CF is known about in your family, it could pop up any time if two carriers meet, marry and have children. There is then a 1:25 chance in each pregnancy of the baby being affected by CF. If it's known in the family at least you can make an informed decision about having children. In our case, CF popped up in Rebecca and having looked back in the family, we could guess but only guess who may have had it.
I am eventually doing a tab on this blog about how CF affected us and what it was like for Rebecca and us to live with, so I've decided to let you read the blog below, which is from another person with CF who is currently using a new drug that's been developed and seems to be having a good effect on CF. Unfortunately, this drug can only treat 5% of the CF community which isn't a lot. This is the reason I pester you all to support my fund raising so that other drugs can be developed to treat ALL CF sufferers.
http://cocktailsandcreon.blogspot.com/
You will hopefully see some pictures in this blog of lungs as they deteriorate and you'll see how bad they look at 35% capacity, Rebecca lived with lungs at this percentage for probably the last 12 - 18 months of her life and believe me it was a struggle. So please have a read of the guest blog and spread the word whenever you can.
I have built the blog a little more so it's coming along but it will be a while before it's finished.
Thank you to anyone who has a read.
Tara for now XX
Sunday, 16 June 2013
Today we got up at 4.50am and did a car boot sale to raise some funds for the cricket match on 1st September. We raised £87 so it was well worth going, this will appear in the fund raising tab at some point.
Managed to do some more tabs for the blog so am cooking on gas now, my Bec would be proud I've managed to work it out. Tara for now X
Managed to do some more tabs for the blog so am cooking on gas now, my Bec would be proud I've managed to work it out. Tara for now X
Friday, 14 June 2013
Trying to set up this blog
It's taken me 4 years to decide to try and design this blog.
My intention is to write about my lovely daughter Rebecca (Becci) who I lost to Cystic Fibrosis on 10th June 2009.
I intend to talk about Becci and remember her ALWAYS
I intend to talk about CF and how it affected Becci and me, my hubby Paul and our family.
I also intend to talk about how I've been since she got her Angel wings, warts and all. I did write my thoughts down in the early months after losing her and I will write those thoughts on here.
I have also included a section of the fundraising being done in Becci's memory for CF and I intend to make this a big part of the blog. I want to raise awareness and try to encourage people to support CF. This illness needs to be cured and until it is, many young people will continue to die at a young age and families go through the devastation of losing a child
My blogs will be my thoughts, they will be honest and some might be upsetting, but I will use this as a way of dealing with the loss of my only child, something even now, 4 years on, I struggle to deal with.
It may also take some time to build the different sections of the blog because I don't have the IT knowledge to do it on my own and Becci isn't here to guide me. She'll be laughing at my antics on a cloud over her rainbow.:):)
My intention is to write about my lovely daughter Rebecca (Becci) who I lost to Cystic Fibrosis on 10th June 2009.
I intend to talk about Becci and remember her ALWAYS
I intend to talk about CF and how it affected Becci and me, my hubby Paul and our family.
I also intend to talk about how I've been since she got her Angel wings, warts and all. I did write my thoughts down in the early months after losing her and I will write those thoughts on here.
I have also included a section of the fundraising being done in Becci's memory for CF and I intend to make this a big part of the blog. I want to raise awareness and try to encourage people to support CF. This illness needs to be cured and until it is, many young people will continue to die at a young age and families go through the devastation of losing a child
My blogs will be my thoughts, they will be honest and some might be upsetting, but I will use this as a way of dealing with the loss of my only child, something even now, 4 years on, I struggle to deal with.
It may also take some time to build the different sections of the blog because I don't have the IT knowledge to do it on my own and Becci isn't here to guide me. She'll be laughing at my antics on a cloud over her rainbow.:):)
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