25th September

             

                                   

Yesterday I celebrated my Birthday , I'm not one for making a fuss about my birthday. I'm grateful of course to be another year older, to be well and of course happy. 

                        

However yesterday was more of an event than normal. Such a stark contrast to last year when Eloise had a routine GOSH out patients appointment scheduled on my Birthday.

       Eloise had had her first rejection episode in June and had been successfully treated with IV methylpred and oral steroids. Her regular medication had been changed and all seemed good. She looked great, a little hamster chops but otherwise she felt great, the day before clinic she was doing Cross Country. So although I had the usual pre appointment tension I wasn't on high alert. It had potential to be a nice clinic, lots of families we know well were there too. So coffee and cake was planned to celebrate my Birthday. 

        Of course as soon as Eloise had her echo and Ecg it was a different story, low voltages, fluid around the heart ( pericardial effusion) and more worrying she was tamponading. Basically the fluid around her heart meant it couldn't beat effectively ! Yet even her consultant by examing her couldn't see any physical signs. This meant she needed to be admitted immediately for cardiac monitoring. Of course we had no belongings. In the end I bought her a few toiletries and a nightdress and made the decision to leave Eloise in Gosh and travel home. Hideous, just hideous, I hate her not being home, it's not right it frightens me but I had no choice. 

                                        

      I travelled home alone to be with the other children and pack up a bag with our belongings. I didn't feel like celebrating , even eating cake was wrong. Weirdly S who only sent me one bouquet of flowers during our marriage sent flowers but by the time we eventually returned home properly they were past their best. 

One year on , the day started with gifts and cards, including this lovely drawing by Henry of him with Warren and I carrying balloons. Warren is bald in the picture as according to Henry he has no hair......stop shaving it off Warren !!!!! 

      

I then spent the day in Town, Brunch in Debenhams with 3 of my lovely work ladies a breakfast baguette . We had a good matter and catch up. A Mooch around the shops , bought a couple of nice things in the Fat Face sale. Then Soho coffee for lunch with my friend E and her baby boy. I Chilled out after the school run, caught up with over 130 facebook messages , felt the love ! 

In the Evening once Warren arrived we had a Hotcha ( Chinese ) Takeaway , very yummy , followed by Cider and GU cheesecake. I bought the obligatory Colin the Caterpillar birthday cake for the children. Thought adding 45 candles to him might have broken his back ! Then I managed to sleep through most of Forrest Gump despite Warren's snoring , should have smothered him with a cushion ! So a pretty damned perfect birthday and I still have a purse full of money to spend and a meal out tomorrow night to look forward to , I think I shall have a Birthday long weekend to make up for all the rubbish ones and the one the Ex completely forgot ! 

                                       

          

                    My lovely four leafed clover Pandora charm from my Irish x

Sadly what I really wanted didn't happen, a lovely young lady I know was called into hospital for a potential Heart and Lung Transplant, she was prepped for surgery but sadly the heart wasn't good enough. She's been waiting so long I'm totally crushed for her. At the beginning of the year we guessed a date for her transplant my guess 25th September, I wished on my two Birthday candles as well. I'm hoping the right gift of life comes for her soon . I also wish for a gift of life for my friend Pineapple's son and for all those waiting to receive the organ transplants they desperately need. All we can do it continue to promote the organ donor register, to keep shouting until the majority sign up. #UnitedWeStand 

      

Miracles can happen, miracles do happen, mines asleep in the next room .Eloise had less than 24 hours to live when her transplant call came. I believe........

    

Moving On

         

Here I am 7.20am, not a bad nights sleep for me but I'm still an insomniac though not as severely as some of my FB friends I can see their middle of the night posts when I'm awake too. 

   Thought I'd take the opportunity to have some "me" time , please don't let this put you off reading but I'm currently in the bath. Just be thankful I don't blog via YouTube ! Candles are lit, scented bubble bath, Sam Smith is serenading me and I have that British answer to any psychological trauma with me a cup of tea. 

    Just felt I wanted to blog this Morning not entirely sure where this blog post will take us, think it's more unstructured than many of my previous postings ! But hopefully it will still be ok for you to read and for me it will serve a purpose. 

I've titled it "Moving On" I don't feel I look back at life that often, well obviously I have reflective moments because of the traumas I went through with Eloise, significant dates are tattooed into my brain but mainly I'm someone who lives in the present, enjoying every day as much as I can. Occasionally being brave and seeing a future too.

        

       

 I guess here I'm thinking of my relationship with S , I've never really looked back and thought what could I have done to have been a better wife so my husband didn't go off with another woman. I think when I discovered his affair it all made a little more sense, his rejection of me, his increased irritability and a fuller recycling box of beer cans. He was a guilty man. We'd never been that close to each other emotionally, I can express how I feel , he never could, never did, very much stiff upper lip. I guess as he never vocalised how he felt I kept quiet too, making do with less than the best from our relationship. Living a lie ? Possibly but my life wasn't an unhappy one but the happiness came from my four children, my home, my friends not from S but it was enough for me. Having him leave me, helped me be more me, this isn't really making sense but bear with me ! I felt free to express how I felt, I gathered strength, turned things around and made a positive life for my four children. I'm proud of myself and my family unit .

   So my family life moved on, it's relaxed , fun and we love each other so much, well for short periods, we aren't the Walton's ! 

     

My life ? Well that started evolving last year during Eloise's blips, I started going on Twitter a lot, I've  clocked up 23K tweets now. Rereading this is realise that's no achievement just time misspent ! I've met a few people I've become close to on there and even met in reality. Meeting new people in this way gave me confidence in myself as a woman. Part of the transformation was the beginning of #FrockFriday every Friday since the beginning of November I've worn a dress , this has been a positive thing , good to feel good about your appearance. I don't feel I'd ever let myself go and many of you know I'd never start a day without applying lipstick. The next step in this transformation was joining City Socializer in January, a fantastic way to meet like minded people for nights out. I've had some great nights out , lovely meals, nice cocktail bars and more important l've made new fabulous friends, friends for life. Again this has increased my confidence as I have to arrive into a room of strangers and engage with them, it's never been a problem. Then the last stage in this me moving on stage is Tinder ! It's nearly 2 whole months ( is that really all ? ) since I met Warren. We've fitted into each other's lives so well, well that's how it seems to me. It just seems natural. It's good to have a partner again, I will admit I struggle at times I'm very independant and I'm sure I'm not the easiest of people to understand, sorry Warren. I guess I spent 18 years of my adult life with a very different type of man , so I'll need to adjust. 

Yesterday I met 4 of Warren's work mates as it was a leaving do for one of them. We spent quite a few hours together visiting 3 pubs including the 6 of us being in a Games Room together. I did surrender and leave with Warren when they went for an Indian ! I may be wrong but for me it worked, they were my kind of people, all very nice guys, easy to talk to and have a laugh with. It was a huge surprise to hear that one of them had read this blog and was very complimentary, so thank you M for your kind words it really means a lot . I know that a lot of my #TransplantFamily read this as they can relate to it but knowing someone who I don't know enjoyed it too that's special. I felt comfortable and at ease yesterday. I never had that feeling when I met S's friends, I felt out of my league and uneducated , quite sad really. I guess that's why S is so happy now he's back in with his close circle of friends who never accepted me and is dating his best friend. Also in 18 years I never met S's work colleagues, never went to any of his work events. I know our children were younger then so babysitters would have been needed but to have been asked would have been good. Next weekend this meeting of friends will happen in reverse as Warren is coming out for a meal to celebrate my Besties birthday and to a Wedding Reception with me of one of my lovely work ladies. I know he'll be happy in their company too. S wouldn't have come, we wouldn't have even been invited as a couple to my friends meal as she'd know he'd not have come. This is so nice, it's good to have a sociable partner and be together amongst our friends. Guess we have some sort of Christmas party to organise here Warren ? 

      So there we go, the Divorce is in it's beginning stages, it's time to sort out the finances and move on. After nearly 3.5 years the time is right. So that's going to take some negotiating but it will be ok.

   Then there's my house my home, things are moving on here too, small projects, rooms to decorate myself , getting Sky, new TV , sorting out the garden, possibly making the front garden into a parking space, new radiators, rooms to get plastered. The list is pretty endless to be honest but it all seems more manageable now. I'm ready to make this house look stunning a good legacy for my family's future.

   Yes it's safe to say I'm moving on . Xxxx

 

Eloise's 14th Birthday

Happy 14th Birthday to my beautiful girl Eloise, I chose her name well it means Warrior Maiden. 

          

         

                                             Eloise with her Boofle, her present from Warren x

                                         

Eloise was born on the 7th September 2000 at 11.33am , born on a Thursday like all my daughters, poor things all have "far to go " Eloise was born at 32 weeks as my waters broke at work on the Sunday before. I never did find out a reason for her premature birth. Any way she was a healthy and a respectable 4lb 15oz and was discharged from hospital 11 days later. 

You're all familiar with her journey since, her heart transplant , her blips ! 

Today of course is a day of celebration my precious girl is 14, if she'd not received a transplant the only birthday we'd have celebrated was her first birthday . That's hard thinking like that. No donor, no birthdays just death. Of course Eloise was lucky in that respect because R donated her precious baby's heart and saved Eloise's life. 

So 13 extra birthdays ultimately because of organ donation , add in excellent hospital care, good Drs , pioneering procedures, new medications and my daughter's quiet determination you've got quite a strong team !  13 very special years but I want more, who doesn't ? 

So Today I cried and cried yes I know not my usual style !

                      

 Cried until I couldn't really speak and my nose was blocked, how do they cry so beautifully in the Movies ? 

        Warren had one soggy shoulder but as he said he does have another. Maybe I just needed to, actually my eyes still hold tears now. I'm happy of course I am but birthdays mean years passed , good normally I know but it's like a count down when you are given a life expectancy for your child. Another year closer to the end, but then thinking logically aren't we all ? That's called getting older ! But I fear my child will be denied the chance to get old, no adulthood, it's closer now of course than it was. She's a teenager and growing up to be a wonderful person. I want more years, I want her with me for ever. I'm angry that this might not be a possibility , hating the virus that destroyed life as it was. Yet at the same time I feel guilt, survivors guilt my daughter is still here, her donor isn't and we have lost many of our #transplantfamily over the last couple of years. Normal service will return, I'll bounce back, but Eloise's birthday does lead me to a short period of reflection. It was good to cry today in front of someone and feel safe to do so, not done that since I was in London with M in December. 

       So I'll give myself a shake, put my smile back on my face. Celebrate with my four beautiful children this Evening now that S and the Mother in Law have left us alone again. 5 is quite a magic number add in my +1 and I'm happy too. Oh and cake too, so it's going to be a good evening x

                                     

I will my gorgeous girl close and continue to love her every precious day as she's one special girl. Maybe she has taught me so much in her life and I'm a better person for it. Eloise xxxx

5 plus 1

Morning, insomnia time here again . I've not been great since my holiday unsure why really but so hoping it doesn't last 6 months like the last episode I had. Anyway that's irrelevant to this blog post. 

      I've now been dating Warren for a huge five weeks ! Sounds so wrong as it feels like we've known each other for ages, it's been very intense so perhaps we've compressed 5 months into 5 weeks ? 

Things are going really well for us, early days I appreciate that but for now we're both very and I mean very happy. 

        

Surely that's all that's important ?

 All that any of our friends and family want for us ? 

Of course my children remain my number one priority, they always will and Warren accepts that, I'd think little of him if he didn't. They are my flesh and blood. I've thought about their needs in all this and I think they're being met. They all like Warren and they've excepted him and enjoy his company. I understand your concern that if things don't work out for me being with Warren the children lose out too but I've got to try. I can't just sit here and wait for them all to grow up before starting a new relationship. Henry is just five I'd have a long time to wait. Life and potentially love would pass me by  One day they'll all grow up and leave me, that's the way it is, the way it should be. I don't want to be left alone, a sad lonely old woman. I deserve a life too. I'm sorry if you don't feel this way but this is my life and I'm going to live it. I feel I'm old enough to make decisions and live with the consequences. My children are strong and resilient I think you can see how incredible they are. They all survived the breakdown of their parents marriage. 

      

     Might as well enjoy a proud mummy moment while I'm here, my gorgeous Leah achieved 13 GCSE's 3 A* , 5 A , 4 B and 1 C . Such an incredible achievement and I'm so happy for her.

A'Level English Literature, Maths, Media and Photography at 6th Form next.

                     

I guess what makes me cross is the inequalities in a marriage break up. I've been separated for over 3 years, that's long enough to think about dating again, I'm not on the rebound for sure !  S has actually been dating or been with his partner for over 4 years now. No one questions that , no one . Why ? Why can he move on and not me ? Apparently I shouldn't date as I'm still married, am I committing adultery ? I guess so in the eyes of the law. I know I'm a mother of four but S is a father of four too. He can have an adult relationship with no one saying anything. I want that too. God I'm angry really , it's just not fair.

 I'm not sure if S knows about Warren yet. I guess so as he does speak to the children. I hope he's happy for me and doesn't use this against me as we've yet to start divorce proceedings. That's about to change. The time is right to cut each other free. I know I could but we're not going down the adultery route but two years mutual separation. I guess J ( S's one time mistress now partner ) gets away without being cited in the divorce but I don't care. She's welcome to him . 

In two weeks time S will meet Warren I think as my Ex Mother in Law is visiting for the weekend and she's asked to meet Warren ( sorry my love, it's a big ask ) I think she is very happy for me but just needs reassurance that nothing will change for her. Why would it she's the children's biological grandparent. Nothing changes that and I'm not a cruel woman. She's more than welcome to visit us and I'll continue to phone her and text her weekly. 

So whatever opinions you have of me, us. Please don't judge me . I know you worry about me and I know Warren's friends and ultimately his family are worried about him too but we'll be ok. We've both been through similar break ups because of cheating spouses . Whatever the outcome of our relationship we'll both want the same for each other happiness. Right now I couldn't be happier, together Warren and I don't stop laughing and smiling and that's just so right. My family is in a good place right now and that's where I want it to stay. 

Always a family of five but now there's room for a plus one.

      

Actually now lying here crying , hhhhmmmmm . Maybe I am a little scared that this will all be snatched away from me but I guess that shows how important Warren is to me. I'm willing now to give love a chance xxxxx

Wants and Needs Revisited

So here we are just three months later from my Blog Post on Wants and Needs and things have changed here. 

     My needs are still fundamentally the same that's not changed. I have all in need in life and I'm satisfied. I appreciate all I have and hold. 4 beautiful children, my home, my wonderful friends, family , great work collegues and ultimately Eloise's continued good health after a difficult year.

          What's changed then ? I want or at least at this point think I want a man back in my life. Things are different at this stage in my life when dating. What you look for isn't the same, on many levels I guess. You've life and dating experience , you have history, you have baggage, you have dependants . I think really it's harder than first time around. 

    When you are young and it's first time around, there seems to be a plan that a lot of us follow, you meet the man of your dreams, date, fall in love, get engaged, have kids and stick together knowing times will be tough. When you have been there and done it, you want completely different things and quite often, you don't even know what those things are, and it's hard to let someone into your life. For me I don't know what I want but from dating several men long term and having a failed marriage I do know what I don't want. I guess with maturity I'm able to speak out and say to someone that's not for me. 

I have my children and I'm financially independent and I don't need a man to sustain me or my life style. 

     At the end of the day don't we just want the same thing ? Someone who makes us happy, someone who makes us feel special, someone that cares. I know friends can fulfill these needs too but.......

                            

Ok then this is what happened and where I am now. A friend told me about the FB app Tinder, I think it was a Sunday but that's hazy already . Out of curiosity I downloaded it and set up a profile. To explain it in simple terms, it's a dating app. Photos, short bio and you then add age range of partner you are looking for and distance from you. Tinder then provides photos of men in your area. You swipe the picture one way for Yes and another for No. If you and the man both swipe Yes you have a match and can message each other. Anyhow got a fair few matches but on closer inspection things weren't as good as they seemed, too far away, monosyllabic on messaging , or just plain weird.  

      

      From it I was matched with W, we chatted a little and just a day or so I had his mobile and I met him very briefly in Town. From that fleeting visit our texting went a little crazy. Days later it was time for my two weeks in Turkey, in preparation we added each other on FB, downloaded Messenger and exchanged email addresses. Thank goodness for these free methods of communication and the advancements in technology that allowed us to continue chatting. Messages pinged back and forth as we learnt more about each other.

           Last Sunday I arrived home, W and I had our first date arranged for Monday meeting in a local coffee shop. But by 4pm I decided to ask if he wanted to bring it forward. So first date night was Sunday. We went to a Country Pub and luckily discovered we could converse and make each laugh in reality without the use of FB smiley symbols ! It was a success .

        Monday was a 11 hour date ! Really good fun, coffee, walk around the Harbourside, Lunch, two country pubs and back into the City for Dinner. Being together for that length of time seemed natural. Wednesday Evenings date drinks in a local pub and Friday's the Adults Only night at the Zoo. Yesterday was another marathon all day date. We've already got a joint membership to the National Trust, so we went to Tyntesfield and had a wonderful day together. Yesterday was spent shopping and having a nice lunch out. Followed by a DVD evening with my children , who have accepted W into our home. 

   So there we are one week six dates all very lovely, it's still very new and it's quite strange how fast things have happened. It's just 4 weeks since I installed that App. It's now deactivated , there were some strange men on it ! It's fate I guess W had only just installed the App too. So who knows where the future will take me but for now I'm happy and surely that's the important thing ? 

     

Living the Holiday Dream x

What a difference just under two weeks make . It's funny how life flings you around, perhaps it's sometimes more of a Wultzer than a rollercoaster ? A couple of weeks ago I was worrying about Eloise's health again now I'm here in Turkey celebrating the life she's been given by her donor family. I'm so lucky to have my gorgeous girl here with me today . 

This is what we all strive for normal family life , no worries, freedom , precious time together . My family always comes together so strongly when we're together in this way on holiday. God I know I'm lucky to be able to afford such luxury but the time to me is precious . I save all year for this, putting money into an account each month. Maybe it's money that could be spent elsewhere, but I've weighed it all up and being on holiday together out weighs everything else I could buy . Off course if my money could buy me more time with my Eloise I would not hesitate to spend it that way, maybe this is the best I can do right now. All memories are precious but the ones we create together on holiday seem golden . That sounds a bit pass the sick bucket but I'm sure a lot of you will appreciate the sentiment. Sometimes when you're at home, you're just living alongside each other as life has become incredibly busy ? A holiday makes you spend quality time together.

                         

     So the next two weeks will be spent as a fantastic family of five, because as we've found out 5 really is our magic number ! I'm grateful to S he has sent me money today to treat the children , so we can have an even better time. 

To top it off our friends A and M are here, we met at the Orka in 2010 when I was still with S and again in 2011 when we'd recently split up. So here we are 3 years later catching up and enjoying each other's company. Like we've never been apart, some friends are just like that aren't they, separation doesn't change your relationship. I'm happy as they'll soon be living a lot closure to us again.

                    Lots of love to you all from Us xxxxx

                          

The Clinic Letter

My Superhero loving daughter was kidnapped and replaced with someone wearing pink , frilly socks and a plait in her hair, I was privileged today !                                                    

         

                                             

The Clinic Letter 

Those of you that have regular trips to hospital appointments will be aware of the post appointment clinic letter. These letters usually arrive 3 weeks after the consultation, you're cc into the letter that is primarily for your GP or other specialists involved in your care. 

    So Eloise's Bristol letters go to our GP and her GOSH consultant and then of course her GOSH letters go to GP and Bristol consultant. The GOSH letters used to enjoy a little trip to India to be typed at one point. I remember a particularly vile patronising transplant nurse telling me so "Mrs Allen you must remember we are busy and our letters are typed in India " Mrs Allen failed to comprehend this and remained cross that a letter telling her her child needed to start antihypertensive medication took 8 weeks to arrive ! 

          Also these letters never seem to make it into your notes very swiftly as in you go to your next shared clinic appointment and the letter from a clinic three months previously hadn't been filed , where is it ? 

    Now this brings me to my latest experience with said clinic letter. On the 11th of June Eloise was seen in Bristol, she had an ECG and an Echo and saw her consultant Dr M. After Eloise's echo the technician got it checked by another tech, they seemed concerned, stopped engaging with us and started that whispering . Well what does that do to you ? For me my stomach knots, I feel sick, faint and cold. Eventually Dr M came back from seeing an emergency patient and said he was happy with the scan, phew, relief floods through me once more. I become chatty again , the World is a good place, my child is ok. Fast forward 3.5 weeks the clinic letter drops through the letter box on Friday......

   I read it getting to the part about the echo. There in black and white "septal motion abnormal " What !!!! They said everything was ok, abnormal isn't ok , well it's not normal ! Fear floods in again. I do what I tell others not to do I google, getting nowhere reassuring !

It doesn't make sense why tell me everything's ok and then send me this ? I go from reassuring myself that if it's something major wouldn't it have been dealt with already to that's it no holiday they'll admit her more tests . I think why has she got this problem now, is it her new medication Ivabradine that lowers her heart rate. Maybe this is an electrical problem....yes that's it they'll tweak her medication she'll be fine. Another problem was also mentioned but that made even less sense to me. 

    So there we are 5 days and nights followed, anxiety levels fluctuating from being totally ok to doom and gloom. Couldn't think ahead , couldn't look forward to our holiday, or even going out the next day. Everything like that lost it's shine. Scary how quickly that happens when things aren't "right" with your child. 

        Couldn't eat breakfast this morning but managed a hot chocolate and ginger snaps on the train, they swirled around in my protesting tummy. Levels of fear increasing as we got nearer to having the dreaded echo. How happy was I that a lovely friendly lady called her in. This makes such a difference some of the GOSH techs aren't great in the communication department. I was glad when the echo was over, she didn't ask for another opinion ( great ) she didn't call for a Dr ( marvellous ) phew ! Thought of rummaging through the notes on the way back to clinic but resisted ! 

         Then it was time to see Dr F I was glad it was him, I trust him, I like his approach and his honesty.  He was smiling away, everything looked fantastic, great ECG voltages higher than they have been for quite a while, stable echo with no increase in fluid good function. So I showed him the clinic letter, he then popped Eloise's echo up on his screen checking for the problem Bristol had seen it wasn't there. Phew, he said even if it was a flattened septum is common in transplant patients .He also reassured me regarding the other problem. 

  Next time I'm worried I must ring him, he insisted that I ring his secretary and leave a message and he'll get back to me. I know if clinic had been ages away I would have rung. I'd already scanned and sent an ECG to them from the 11th June as I was worried. 

        So there we are the clinic letter, it's designed as Dr to Dr correspondence it can be too complicated for us to understand ( and I'm a nurse ) yet we get sent it. How often have you wondered what it all means and been concerned ? Yet if we don't receive a copy it can sometimes be hard to get new prescriptions or treatments as the Drs seem to not have the letters infront of them when you visit, a delay in filing them. A tricky situation indeed.