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Post by odiness on Feb 18, 2008 21:29:30 GMT
Hi everyone, I've decided to post Jasmine's story so far on here in the hope that it might help others faced with a difficult decision to make during pregnancy, also cos it's nice to share.... will have to post it in installments as it's long and I need a break because I'm getting all emotional re-living it! It does get more cheerful I promise. x
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Jasmine’s Story
Before the birth…. Test results
In February 2007 year, I learnt that I was expecting my first child. Initially it was quite a shock as this wasn’t planned and my relationship with the baby’s father had recently ended. For a career focussed, party girl (complete with bachelorette pad), it was quite a decision to continue with the pregnancy. After serious consideration I decided that this was an opportunity to give my life a new direction and purpose. My early pregnancy was uneventful and I started to adjust to the idea that I would soon be a working, single Mum with a beautiful baby to share my life with.
Then, at 17 weeks, I received a phone call from the hospital asking me to go in and discuss my screening results with the obstetrician. I arrived to be told that my results had shown me to be high risk with a 1 in 50 chance that my baby had Downs Syndrome. They explained that an amniocentesis test would provide a definitive diagnosis but that I would have to have the test that same afternoon. Because I hadn’t even considered the possibility that my baby would be anything other than perfectly healthy, it was difficult to balance the benefit of having the test against the risk of miscarriage. Without giving much thought to the consequences or outcome, I agreed to have the test, telling myself that it was the best way to put my mind at rest and avoid any further worry throughout the pregnancy. After all 1 in 50 are pretty good odds in my favour, I convinced myself that the test would prove my baby was fine.
The hospital explained that the sample from my test would be analysed in two parts, the first results for Downs would be fast tracked and be back within 48 hours and the full results that would detect any other, rarer conditions would take up to 2 weeks.
The following day after the amino I went into work. It was easier for me to be distracted and not think about the test, or so I thought. After all, ever the optimist, I wasn’t even prepared to consider that anything was wrong with my baby so what was the point in sitting at home and worrying about it? Of course the tiniest doubt was there at the back of my mind but I pushed it aside and told myself that I would deal with things when I knew for sure the test results.
I had to wait over the weekend for my fast track results but believe it or not it didn’t seem to drag. In a way I suppose that was because I was trying to forget about it, I didn’t want to talk about the possibilities, I wanted to deal with facts.
Monday I waited until lunch time with no word from the hospital, and then I called them myself for news of my test results. The midwife told me very matter of factly that there had been insufficient fluid in my sample to allow any fast results, I had to wait for another 10 days to know whether or not my baby had Downs Syndrome.
I think that was the first time I cried, suddenly I thought about what if the test showed positive for Downs Syndrome or maybe something worse…. I’m not generally an outwardly emotional person, I bottle my feelings up, I cry alone, think alone, I try not to share the things that worry or upset me. I don’t think I’d ever felt as alone as I did at that moment. I felt sick to my stomach, I hadn’t had my results but suddenly my optimism failed and I can’t explain it but I knew that my baby wasn’t the perfect little person I thought he or she would be. I’d been worried from the beginning of my pregnancy about whether I had really made the right decision for us both. I felt that I could just about cope with bring up a baby on my own, with no financial or emotional support from it’s father, could I cope with a child with a disability? I cried for all of ten minutes, hiding on the bench by the pond outside of my work place. Then I straightened my make up, walked back into the office and headed to the Management meeting that I had scheduled for the afternoon.
That same night I felt my baby move for the first time. Little butterflies leaping around low down in my stomach, it was almost as though my baby was reminding me that he or she was doing just fine and having a great time.
The next week dragged and although I’d considered the result briefly, I once again threw myself into my one defence mechanism, work and tried to avoid thinking too deeply about any decisions that I might have to make.
13 days since my amniocentesis test and still no word from the hospital. I was at a works conference and just couldn’t concentrate in anything that was being said. Usually I’m the most vocal person in the room at these things, I have an opinion on everything but I’d withdrawn into myself, almost as though I wasn’t even there. I decided at lunch time to ring the hospital, I spoke to the midwife who had been there at my amniocentesis test. She told me that I needed to go into the hospital to discuss my results. At first I said “Can’t you just give me my results over the phone?”, immediately I felt stupid. It’s not as if I would need to discuss the results if there was nothing wrong. She advised that I would be better to go in and chat things through. I left the conference straight away and headed straight to my Mum’s, crying uncontrollably the whole journey so that I could hardly focus through the tears to drive. I walked into my Mum’s and as soon as she saw me she knew, as Mum’s always do. After a coffee and more cigarettes than a pregnant woman should smoke, we headed to the hospital along with my Step Dad, I was in too much of a state to drive myself.
I sat with my Mum and Step Dad in the family room. The same midwife, Margaret and the obstetrician sat opposite us with glum expressions. They explained that the results had confirmed Downs Syndrome, Trisomy 21. They told me that it wasn’t a genetic kind but a “fluke” of nature that occurs when the cells split. They spoke in medical terms about what this could mean for my baby in terms of health and development. After a few minutes they asked how I wanted to take things forward, explaining that it would be better to have a termination sooner rather than later. I could tell that they had assumed I would want to terminate if the results came back positive. The stupid thing was, I hadn’t really even considered that I had a decision to make. In hind sight I now realise that from the moment I agreed to the amnio I should have been thinking ahead about the decision of whether to keep my baby or not. Suddenly I felt angry, I sat there listening to the professionals telling me what support was available to help me deal with grieving for the loss of my child. I hadn’t lost my child and I wasn’t ready to give it up just like that. I needed more time.
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pëngui
Junior Member
Posts: 110
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Post by pëngui on Feb 18, 2008 22:20:04 GMT
Hey Lucy, what a first chapter!!! You have written the story of Jasmine so well, I could feel everything you were going through. It is really interesting to hear your story, as I only found out Jenna had ds after she was born. You really are a strong woman, I can't wait for the next chapter.. Take care gx
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Post by lesley on Feb 20, 2008 21:05:53 GMT
That was really well written. It must be very emotional for you thinking of it all. Well done. xx
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Post by claireyd22 on Feb 20, 2008 22:36:10 GMT
Lucy, thats so well written, i couldn;t read it quick enough. Its nice to know that there is a happy ending though - the ever gorgeous Jasmine xx
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Post by odiness on Feb 21, 2008 19:22:16 GMT
Chapter 2 ....
The decision….
I asked for a copy of my test results and told the midwife that I needed more time to make my decision. I travelled back to my Mum’s in numb silence. It’s hard to recall my initial thoughts now because there were just so many. I knew that no one could tell me the severity of Downs Syndrome before my baby was born, I just didn’t know what to expect or whether I could cope.
I got home and sat with that brown envelope in my hand. It felt as though once I read it there was no going back. That would be it, my baby would have Downs Syndrome. How ridiculous that a piece of paper can signify so much. I knew I had to see it for myself though. There it was ‘Female foetus – Triscomy 21’! The first thing I thought was, “oh my god, I’m having a baby girl!”
Of course you look to the people closest to help with big decisions. My Step Dad works in the medical profession with people with mental illness and learning disabilities, he was of the view that there are much worse conditions and that there is a lot of support nowadays. My Mum on the other hand admitted that she thought I wouldn’t be able to cope and that it wasn’t practical to have this baby on my own any longer. I know she had my best interests at heart and was thinking about me, her baby, and how hurt I was. Rightly she told me that I’d be making a life long commitment to this child, that he or she are likely to always be with me. To be honest though I had been willing to make a life long commitment before I knew my baby had Downs Syndrome.
I have never cried so much in my lifetime as I did the next few days. I felt as though I was grieving already. I had lost my perfect, precious little baby. I was so conflicted. My head told me that I wouldn’t be able to cope on my own, wouldn’t be able to go back to work, that I wasn’t emotionally strong enough. My heart told me that this was my little girl, who I felt kicking and wriggling and had had such hopes for, she was already part of me.
I have to be honest and say that I was like a yoyo. For the first time in my outspoken, assertive, go-get-um life, I didn’t know what to do. I kept asking myself why I wanted a baby in the first place. It was to give my life new direction, new purpose, unconditional love. So what had changed?
Strangely enough it was my Mum who helped me make my final decision. After a couple of days she said “Stop tormenting yourself, you must do what you feel is best for you and I don’t think you could live with not having this baby. You’re a strong person and I will support you.”
It is so unlike me for my heart to win over my head but I have never had to make such a life changing decision. I suddenly realised that I hadn’t lost my baby, she was still growing and wriggling and a permanent reminder of what I had so been looking forward to. It was almost as though I wanted her more than ever. She was a fighter. She had survived the amnio, was so full of life, she deserved a chance to be in this world more than anyone.
I can’t explain the sense of relief at reaching my decision. It was almost as though over night I had gone from an emotional wreck to an expectant mother once again eagerly anticipating my little one’s arrival. I knew that it wouldn’t be easy but I was also certain that I would never regret having my baby.
In honesty there was one last hurdle. I told myself that I wanted to have the 20 week scan and find out whether any major health problems could be detected before I finally committed myself to continuing the pregnancy. Perhaps it sounds silly but the Downs I could cope with, the thought that my baby might have to undergo traumatic heart surgery or something similar at birth was just too much for me. I knew there were no guarantees but I wasn’t prepared to knowingly continue if my little girl was going to have to fight for survival from day 1.
I had the 20 week scan and there she was. My little girl, aka “the wriggler” leaping around and kicking the probe, disgruntled at the disturbance! The first thing I noticed was her little hand, she was giving me thumbs up. I almost laughed out loud. It was like she was saying “hey Mummy, I’m a-ok in here thanks”. No health problems were detected from the scan although the Downs indicators were visible and further substantiated the test results.
I went from my scan to the relatives’ room and saw Margaret (my Irish Midwife) and I just said “I’m going to continue with this pregnancy, my little girl’s a fighter like her Mum and we’ll be just fine”. I couldn’t believe it, the midwife cried. She congratulated me and said she was very pleased and would like to personally look after me for the remainder of my pregnancy. She said she had a family member with Downs. I gave her a hug and thanked her for her support.
AS I left the hospital that day I think I felt strangely euphoric, which is a crazy reaction to knowing your baby has Downs. I think I was just pretty pleased and proud that me and my little girl were still going to be together. I was going to be a Mummy.
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Post by lisajg on Feb 21, 2008 19:49:26 GMT
Just wanted to say thanks for sharing your story on here Lucy, it's very touching to read xx
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Post by lesley on Feb 22, 2008 16:40:38 GMT
Lucy, you've really moved me reading chapter 2. I have to confess I have tears in my eyes. xx
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Post by debs4 on Feb 22, 2008 21:32:38 GMT
Its a lovely story. You should send it to a magazine to be published. x
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Post by sarahncharlimai on Feb 24, 2008 12:25:34 GMT
hi lucy, reading that has brought back some memory's for me too, as our experiance seem rather similar, in fact ive just shed some tears thanks for sharing x
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Post by max on Feb 24, 2008 17:10:55 GMT
next chapter!!!! This is brilliant and so different from my experience. This should be a book for people in the same situation as you to read - everyone feels so alone and this would be a great! You're a fab writer!
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Post by odiness on Feb 24, 2008 19:49:48 GMT
Thanks for the comments ladies, next chapter soon. Lucy x
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Post by shirley on Feb 25, 2008 5:24:24 GMT
I agree with everyone else Lucy, you are doing really well putting your thoughts and feelings out there for everyone to read, and you do it so well. The story is gripping. Next chapter......!!!
Shirley xxx
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Post by sharon22 on Feb 26, 2008 21:07:08 GMT
Lucy that is just fantastic to read. You should get something published for other parents to read. You are a brilliant writter.
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Post by odiness on Mar 2, 2008 0:18:05 GMT
Chapter 3 - Getting prepared….
After making my decision I wanted to do as much as possible to be prepared for my little girl’s arrival. Obviously it’s important for any family to be organised and have every thing ready for the big event. I had already considered names and had decided that my little girl was going to be named Jasmine.
I needed to be emotionally prepared as well as have all of the practical things in place. I decided to contact Jasmine’s father and share the news and my decision with him. He knew that I was pregnant and had not wanted to be involved, I don’t know what I expected to change. I suppose I just wanted him to feel a little of what I was feeling. In honesty I really wanted Jasmine to have her Dad in her life, I should have known that telling him about her Downs Syndrome wouldn’t change things, he already thought I was insane for keeping the baby in the first place when we separated. I emailed him scan pictures and told him about the test results and about my decision. I received a brief reply saying he was sorry “our baby” had Downs and he hoped we’d both be ok.
For a week or so I spent every spare minute researching Downs Syndrome, browsing the internet, sending off for information, contacting various sites and individuals who may be able to give me an insight into the reality of bringing up a child with Downs. To be honest I thought of little else. The feeling of relief and excitement after making my decision started to ebb. It wasn’t that I was regretting my decision to have her, I can honestly say I have never felt that, but I was starting to let the worry eat away at me. There were so many uncertainties surrounding her arrival, I was beginning to dread the possibilities and dwell on the “what ifs”.
Work was a distraction although I was starting to be less conscientious and knew my heart wasn’t in it. I was getting by with doing the bare minimum which is totally out of character but I couldn’t concentrate or give my career my usual commitment.
Obviously my bump was growing and more and more people were showing an interest in the pregnancy. The usual questions were posed around the sex of the baby and how are we both. I found it difficult to know how to answer, should I tell people that I know my baby has Downs? I have always been frank and forthright and so I found myself telling people, I realise now that I wanted to see their reaction. Perhaps I was looking for reassurance or acceptance from others, I’m not sure really. It wasn’t a particularly conscious decision but on most occasions with people that I knew well enough, I would tell them. I don’t know what I expected, no one really appeared outwardly shocked or uncomfortable. A few said they were sorry and I told them not to be, that I was looking forward to her arrival and we would do just fine.
I joined antenatal at around 26 weeks pregnant. I think that’s when I started to enjoy being pregnant again and looking forward to Jasmine’s arrival. Funny how as an expectant mum, you look forward to meeting your baby but not the birth. I was scared witless as were most of the first time mums-to-be. The other girls were great and I made some really good friends, it was nice to talk about normal pregnancy related things such as swollen ankles and not being able to reach my own toe nails to cut them or paint them.
As well as work I was trying to find a new home for me and Jasmine. The flat that I had lived in for 3 years was too small and on a farm so cold and damp in winter with outside stairs. I knew it wasn’t suitable. This gave me something to worry about other than the uncertainty around my baby’s health. I knew that if I needed to I could go stay with my Mum but I wanted to be independent and have some space of our own. I found somewhere just 6 weeks before I was due to have Jasmine so there was a mad panic then to get all of my things moved in and our new home ready. In the end I waited until I finished work for maternity and got the flat ready about 2 weeks before my expected delivery date.
With everything else going on I’d had less time to worry about Jasmine’s Downs. In my usual style I had managed to put my worries to the back of my mind and get on with things. I felt as though I knew what to expect and that I would be ready for whatever might happen.
After the move I started to realise that my due date was getting close and I had mixed emotions. I’d been told that often Downs babies are premature, I had 2 weeks to go and I knew I wasn’t ready. Of course I wanted to hold my baby and see her but I hadn’t got to the stage that many pregnant women do of having enough and wanting it to happen. I was dreading the actual labour / birth and frightened that when Jasmine arrived she might be really poorly. What if I couldn’t hold her and she needed special care? I couldn’t get excited because I was so anxious.
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pëngui
Junior Member
Posts: 110
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Post by pëngui on Mar 2, 2008 22:32:31 GMT
CHAPTER 3... Thanks for sharing this story, it is really good. You ARE and have been so strong throughout your pregnancy and the birth of Jasmine. I could never of coped with what you have been through, you truly are a strong laydeee. Hope you are proud of yourself, Jasmine is so lucky to have you as her mummy. gx
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Post by max on Mar 10, 2008 11:05:19 GMT
Loving it! Kepp them coming. I still wish I had been able to read something like this when I had Caleb. Instead I had a rubbish leaflet called "your baby had downs syndrome" and it told me to grieve for my child!!!!!! This positive and personal story would be so much better.
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Post by anita on Mar 10, 2008 20:34:39 GMT
Thanks for sharing your story it's really lovely and I agree with what Max says, reading something positive and coming from a real life expierance is alot better than reading the dribble the health professionals give you I had the same leaflet. I think we should rewrite them!
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Post by traceylouise78 on Mar 17, 2008 14:03:24 GMT
Lucy, i've got tears in my eyes ... and i'm at work!!!!! I agree with everyone else you should really look into getting this published its such a positive story
Trace xx
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Post by claireyd22 on Mar 17, 2008 20:14:33 GMT
Lucy, you're brilliant. I agree with what the others have said, we were given a horrible computer print out about half an inch thick with a grey cover saying 'Downs Syndrome, parent information. It was horrible and I kept it face down in my hospital room for the whole time I was in hospital. ~Your story would have been so much more positive to read. Well done, and don;t be too long with chapter 4 xxx
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Post by odiness on Mar 25, 2008 21:52:07 GMT
Chapter 4 .... The birth….
Isn’t it funny how you can remember the birth of your child as if it were only yesterday? Perhaps the memory will dim as the months and years pass but for me it seems as though I can recall every tiny detail.
It was Wednesday 19th September. I’d been having niggley little pains for a week or so but nothing remarkable. I’d arranged to go to my antenatal class and then on to some shops and for lunch with a couple of the girls from my group. When I woke up that morning the pains were slightly stronger and I couldn’t put my finger on it but I just felt weird, generally unwell and uneasy I suppose. Anyway, I decided to carry on with my plans regardless. By the time I arrived home I knew that I was in real labour, I headed for the bath and waited for things to develop. By about 6pm in the evening I was getting uncomfortable but knew I still had a long way to go. I went to bed but wasn’t able to get comfortable enough to sleep. Mum helped me get my bags together ready for the hospital.
By 11pm the contractions were unbearable although still only 5 minutes apart, I headed for the hospital with my Mum. I was examined and still only 2cm dilated. The hospital explained that this stage of labour could go on for quite some time. They were really good and told me that if I preferred to stay there they would find me a private room on the pre-labour ward and try to make me comfortable. Once I was settled my Mum headed home to wait for a phone call. I knew that there was no chance of sleep even though I was exhausted. The paracetamol didn’t help the pain so I hooked up to a tens machine and spent the whole night pacing round and sitting on a birthing ball. I was trying so hard not to think about things too much. I was nervous about the labour and anxious about the health of my little baby girl.
The following day followed the same pattern, contractions weren’t getting any closer but they were excruciating. I must have walked around the hospital grounds at least 5 times by the end of the day to try to speed things up, the only thing it achieved was to make me even more exhausted.
A couple of times the midwife popped in and hooked me up to the monitor. Because my contractions were still 4 to 5 minutes apart they told me I was still in the early stages of labour and to try to relax and get some sleep. I knew though that the pain and the pressure that I was feeling was getting more and more severe but of course I had to resign myself to the fact that perhaps my threshold for pain wasn’t as strong as I thought it was.
By 10pm on the Thursday evening, having still not slept a wink, I was too uncomfortable to do anything but sit on that infuriating bouncy ball or walk round in circles in my private room. I decided to take a bath, after my bath I went back to my hospital room and sat back on my new inflatable best friend. It was about 1am when I started to get distressed. I kept telling myself that if the early stages of my labour were this bad I didn’t think I could cope with the real thing. I couldn’t believe I was being such a wimp, I sat and cried and bounced, feeling very sorry for myself, I just wanted it to be over.
A nurse was passing and saw my light so stuck her head in. When she saw that I was upset she came in and offered to examine me just to put my mind at rest and see how far I had progressed. I climbed onto the bed and she took a look, I could see straight away she was surprised. “We’d better get you down to the delivery suite” she told me, “you’re 9 cm dilated. Your baby is coming very soon!” The nurses started flapping a bit and wheeled me down to the delivery suite at a fast trot. They told me that they’d call my Mum who was going to be my birthing partner…. I hoped that she would be there on time.
Having had nothing for the pain other than a couple of paracetamol, I decided to make the most of the gas and air. I lay on the bed in the delivery suite waiting for my Mum to arrive and getting my fill of the drugs! I felt so much more relaxed and comfortable after 10 minutes on the gas and air. I think I must actually have dozed off because the next minute my Mum arrived and yet it had taken her an hour from when they called her. I was relieved knowing she was there with me. However, in true Mum style she started lecturing me about not having too much gas and air because it would make me sick, I just laughed and told her I was making the most of it as I’d been in agony all day.
Despite how far my labour had progressed, my contractions were still only about 4 minutes apart, not close enough for the midwifes likings. She broke my waters to see if that would speed things up. 30 minutes and a canister of gas and air later they were still no closer. I was actually surprisingly calm for me, I’d expected to be climbing the walls and swearing like a trouper when it came to labour but I was so exhausted from having two sleepless nights, I was actually dozing between contractions. Mum was clearly shattered from being woken up in the middle of the night because I had to keep poking her and telling her to wake up as she was snoring in the chair next to me…. “Great birthing partner you are” I told her, “aren’t you supposed to be mopping my brow or something?”
The midwife came in and hooked me up to a drip which was intended to force my contractions to speed up so that I could start to deliver my baby. It felt like another hour to me although Mum says it was within 10 minutes, suddenly I had the urge to push, Mum was nodding off in the arm chair again so I shouted that I was going to push!
I won’t describe the delivery in too much gory detail, I can tell you that it felt like an age and I really didn’t think I had the strength to push hard enough. At one stage the midwife asked me whether I wanted the baby delivered onto my chest, I was so preoccupied with wanting the whole ordeal over, I think I made some useless response like “I don’t mind”. At 6 am Friday 21st September 2007, after 30 minutes of pushing I heard my baby cry for the first time. The midwives quickly wiped her down and placed her on my chest. I think I was too numb to absorb just how wonderful it felt to hold her at that moment, I don’t think I smiled or cried or anything, I just looked at her through sleepy eyes and she looked at me through huge, blue, curious eyes. I know my Mum had a tear in her eye and she told me she was proud of me then held her grand daughter before the midwives took her back to check her over.
Once I had had a shower and a cuppa I was ready to go up to the ward with my baby. As we settled into my new private room, I lay on the bed with my new daughter fast asleep in the cot next to me. I watched her in awe, suddenly I couldn’t even contemplate sleep. My little girl Jasmine Ruth had arrived and she was so beautiful and perfect, it just didn’t seem real.
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Post by tantalizintina on Mar 25, 2008 22:52:42 GMT
Lovely Lucy... thanks 4 sharing xxx
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Post by max on Mar 26, 2008 8:17:46 GMT
awwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwww!
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Post by sarahncharlimai on Mar 26, 2008 8:31:10 GMT
aw lucy that was lovely, your such a good writer and it comes from t heart x
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Post by nikki on Mar 26, 2008 16:30:05 GMT
Awwwwwwww thats lovely lucy xx
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Post by anita on Mar 26, 2008 22:44:50 GMT
Thats really lovely, and if I haven't said before Jasmine is such a cutie xx
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Post by tina79 on Mar 27, 2008 11:40:42 GMT
Lucy that is brilliant, i really enjoyed reading it. Thanks for sharing it with us.
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Post by lesley on Mar 27, 2008 16:30:44 GMT
Lovely. Tears in the eyes again! lol xx
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Post by lizzymd² on Mar 27, 2008 16:58:24 GMT
Teary hormonal women here, i'm so glad i read those chapters at once, i couldn't have waited.
Is there any more?
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Post by odiness on Mar 27, 2008 19:09:00 GMT
Yeh Lizzy, couple more to come yety, work in progress. Thanks for the comments everyone. x
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Post by michelle1987 on Mar 30, 2008 0:34:25 GMT
aww thats brill i cant wait for more
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