An Alternative Christmas.....I did it My Way !

Christmas 2014     

                                     

  

- Christmas 2014 has passed now and I feel it went well. 

In the end I decided I would see Warren on Christmas Day in the afternoon. I'm unsure as to what others thought but at the end of the day he's my partner and we've been together for 5 whole months ! It wasn't at all awkward, everyone seemed to be relaxed. 

    I can appreciate that the way I spend my Christmases with my soon to be Ex husband S and his mother J quite strange and yes if it was just me in the equation it wouldn't happen. I'd not invite them, but as most of you know as a parent your Childrens needs become first. So that's how this way of spending Christmas as a family unit evolved. 

Cue Christmas 2011 our first as a separated couple, I gave this some thought and decided I never wanted to spend a Christmas without my children while they were young and still living under my roof. I didn't want to share them a day each for example or do alternative years etc. Most of these type of solutions not practical when S lives 3 hours away.  So I put myself in quite an uncomfortable situation that first Christmas and had S and J as my house guests, even letting S into my bedroom to watch the children open their stockings. J was very grateful to be here to see her only grandchildren and my parents helped to ease a lot of the tension. The children's excitement helped too especially little Henry who at 2 years old was so enthralled with the magic of it all. I'd never want to miss those moments and I have to hope S feels like that too. 

   So Christmas 2014 our fourth celebrated in this way. In the week before I feel some tension more so this year as S wanted to take Henry back to Eastbourne with him to spend some more time with him, his partner and J. This made me physically sick. I so didn't want my boy to go, I've managed to avoid this situation until this year when Eloise spent a day at S's home in October. It's different with Henry, he's only 5. I didn't want S's partner near any of my children ever but I can't say much as S may feel the same about Warren being near his children and of course that's a frequent happening. Also not going to rock the boat now as we're starting to sort the financial side of our divorce out. I know it seems like choosing to go for the easy life option, but sometimes you have to know what's worth fighting for and three nights without my baby I'll manage he'll be back in my arms very soon. We've managed the last three plus years amicably I want that to continue. Of course if it was just me I would love closure to never have to see or hear from him again. But we have more than history we have four children. So I can tolerate him for their sakes.

    So on the 23rd of December S and J arrive I'm out shopping with my lovely friend K ,we had a fabulous afternoon and then enjoyed dinner out as well. A lovely relaxing day, stocked up on M&S food. When I arrived home the TV is blaring out and Henry is still up running wild , yep nothing's changed. 4 years on same chaos and lax parenting.  Kids have been fed the obligatory take away. So I sort out Henry and the kitchen, write a shopping list for S and print out the meat order for M&S. I say my goodnights.....feeling like a stranger or an intruder in my home. The invasion is getting to me. Time to zone out in that tried favourite the bath.

24th December - S takes Henry and Eloise out to do the food shop and go to the Cinema to watch The Hobbit Film. I spend my time doing all the last minute cleaning and prepping. In the afternoon my parents arrive into the mix, the house is filling up. Then Conor and Leah so bodies everywhere ! S cooks our evening meal, it took some time as he'd set up the Playstaion in the basement so he could game all over the holiday period without being disturbed. It's funny to see what your life was like not that long ago and be reminded that you're so lucky now. Presents all sorted, stockings filled, bed time. Another day survived, tick ! So lots of messages sent to Warren, pleas for help ! 

25th December - Christmas Day , opened the stockings in my bed, S didn't join us this year as he'd not realised that was what was happening even though I sent both Millie and Henry down to tell him. Guess what he was on the Playstation , lol ! The day went the usual way, great presents, S in the kitchen, parents chatting. Kids playing etc, etc. I was on FB messenger with Warren. I decided to invite him around to join us late afternoon. A bit of a gamble, I felt a little anxious until he arrived but It went well , he fitted in with everyone and it wasn't awkward........well not until my dad asked where Warren was sleeping ! 

      

26th December - Boxing Day I had a lovely time shopping with J , mum and Millie. Warren was kind enough to be our chauffeur and bag carrier, his only reward a panini , oh and boxer shorts ! He also delivered Conor's presents to his house. 

 S cooked another delicious roast this time lamb, so nice not cooking, it's still something I'm very rubbish at ! It's the timing....I'm currently in the kitchen cooking a roast right now, it's not going too well ! 

Then the funniest thing I became part of three's a crowd as Warren and S settled down to watch Expendables 3 together, you couldn't make it up could you ? I think it's easier if they do get on as they'll keep meeting up when it's S's weekend to see the children. I think J was more put out than S as it's obvious that Millie in particular likes Warren being here and likes the attention he gives her. I've been reflecting a little on the break up of my marriage lately thinking my children weren't harmed by it. I now think perhaps it's Millie who has missed out on having a dad and the attention from him . She was seven when we split up. 

                               

27th December S and J left at 8.30am taking my very excited baby boy with them the house instantly became quiet. I'm not sure I like it the Gingerling adds a lot into the mix of our family, he's a huge character. I never imagined having a son, now I cannot remember a time without him . He's no angel but he's fun , a ball of energy . I just love his "take" on the World. So this was already a tough day then Warren had the worrying news his dad was poorly and hospitalised. Thankfully as the news filtered over from Ireland there was reassurance and Warren was able to relax a little, it must be very hard being so far away from your close family at times like this and being unable to just pop over. I felt useless not able offer any major comfort , just words and a hug. I think the contrast between Warren's family and S's is huge and I'm not talking about the number of children here. Just the love and respect Warren has for his parents is lovely to see.  I think J wants S to invite her to live with him and his partner, I just have this feeling she'll grind him down. Her hints were quite huge, so good luck to them ! 

       Later I had a lovely wander along Park Street with mum and dad. Lunch out and good shopping. 

28th December - I think we're alone now......last of the guests have gone. PJ's , relaxation, log fire and no schedule, perfect. 

       

 So that was a summary of my first Christmas with Warren and my children. I'm happy and I'm glad Warren was with me, my dad thanked Warren for his company this morning. I think it was good for them to see Warren again. 

S could buy me anything I wanted he just didn't but he never gave me what I needed . Time, companionship, attention and love these things are free but more precious than anything and sadly in some  relationships very rare. I have all of those things now and it feels good and that feeling is filtering down to my children as well. I hope that Warren feels this way too. 

Merry Christmas and a Happy New Year.........I did it My Way ! 

Our Year 2015

Let's start at the very beginning always a good place to start.

 

JANUARY - in one respect I didn't want this month to arrive as GOSH had moved Eloise's Annual Review forward because of her persistent tachycardia of unknown origin. They needed to do a coronary angiogram to see if her heart was ok. Mainly to check her coronary arteries following her two rejection episodes. But then again it's best to have answers and know what you're dealing with, always liked a plan ! So I wished time away until the appointment date arrived. Thankfully her heart was totally fine, all tests were normal , zero rejection on biopsy and her coronary arteries were "peachy" a great start to our Year. 

                                    

This is the month I bravely joined City Socializer, it was a great thing for me and I've made some lovely friends and had some fabulous days and evenings out. Looking forward to more in the New Year.

                   

FEBRUARY - this is usually a fun month as it's Henry's Birthday month and we always go to Butlins in Minehead.

      This year my baby turned 5 years old 

             

                                               

We enjoyed our week in the Butlins Bubble, hardly a bubble when you have Wifi but it's still a change of scene. Leah stayed with my parents as did the tortoises ! The girls loved the roller skating rink and Henry the swing boats. The Sooty and Sweep show was very popular too and Dick and Dom.

       

MARCH - not sure what it's like in your house but it seems like March is a bit of a non event Month ! I enjoyed a trip to the Zoo with Millie and Henry, I remember Millie had one of her mega tantrums !!! It must have been warm looking at their clothing.

                               

March does however contain Mothers Day so rather than cook and clean up we went out for lunch.

                       

APRIL - always a good month 2 weeks off for school holidays and chocolate as its Easter ! Travelled to Southend to the Hearts for Kids Ball with Katie and Ruth and met some of my lovely #TransplantFamily for the first time and caught up with others. The weather was glorious. 

                        

Another April highlight going to see Miranda Hart live at the Birmingham NEC , we made a trip of it and got the longest Premier Inn Room ever ! The show was great and Miranda her usual hilarious self. Think I might get the dvd so we can see the show again, after all Eloise is Miranda's love child ! 

                        

MAY - May this year meant more travelling and more visits to see my heart family. Katie and I flew to Newcastle and had two great days shopping and eating ( of course) Managed to meet up with a few of my #TransplantFamily for drinks one Evening and have a cuppa with Eve and her girls the next day. It was a great trip and needs repeating.......

          We enjoyed an after hours tour of the SS Great Britain one Evening, you needed to use torches inside the ship and search for the captains treasure which was gold chocolate coins, it was a really lovely Evening and the children enjoyed climbing all over the ship. 

                      

May is Amelia's birthday month, she was 11 on the 22nd of May 

         

     

Busy month May during half term as S had the three youngest children I decided to take the opportunity to have some me time and travel to Norwich to catch up with my friends M and J, had a really lovely time exploring the city despite the wet weather ! Lots of beautiful buildings and a good shopping area. Had some good meals together and on the last day M drove me to a few places on the Norfolk coastline, stunning beaches, never seen such vast lengths of sand, all unspoilt and non commercial. 

           

                         

JUNE- now the month of June brought some highs and lows as for the first time Eloise was hospitalised with an infection, she caught pneumonia. I was taking her to Bristol kids to have routine bloods taken when she suddenly became breathless. This scared me as breathlessness is a sign of rejection. One of my lovely work collegues came and collected her and we wheeled her to A/E. Her temperature was high and after a chest X-ray pneumonia was diagnosed. She was discharged with oral antibiotics as she was seeing her cardiology team in the afternoon. Later once Dr M saw her he admitted her to ward 32 for oral antibiotics. 3 nights later we eventually got home. Eloise was a star throughout, I think she liked the peace and quiet of her private room ! 

                                      

A couple of days later we celebrated the 12th Anniversary of Eloise's heart transplant. Always remembering Zara Eloise's donor. 12 wooden hearts in Eloise's box one for every year of recycled life. This year I was lucky enough to get a limited addition crystal heart while we were in Newcastle, sold in aid of CHUF . The unit where Eloise had her transplant.

                                   

                                   

During June Leah finished taking all her GCSE exams in 13 different subjects and then left Cotham School . She really enjoyed her school prom and looked stunning.

                                     

                           

JULY - I'm sure plenty of things happened at the beginning of July but I'm going to focus firstly on my scary 5 days on Tinder. Take a look you'd be scared too if you look at who is on offer in your local area ! I swiped away, not always in the right direction, made a fair few matches and got chatting to a couple of guys. Then I matched Warren, we had a short conversation over a day or so then on the 17th of July we met very briefly and the texting continued and facebook messenger was added.

   

 Two days later I flew to Turkey with my family for another wonderful holiday at Club Orka in Hisaronau . We had a great first week with friends we'd met on holiday twice before. Such a relaxing break. A high light was our boat trip. It was great and we got some lovely professional photographs on a CD. 

       

I persisted with the sporadic wifi and spent a lot of time in contact with Warren, you've got mail !!!! Very strange getting to know someone in this way. Remembering that last time I dated many of us didn't even have mobile phones except for work purposes. Dating or getting to know someone via social is another thing ! 

AUGUST - back to England, I'd arranged to meet Warren the next day Monday for a coffee as we arrived home at 5am on Sunday after no sleep ! But in the end as all we were doing was pinging messages we met Sunday Evening, followed by the longest date ever on the Monday. That was just the beginning.........

           

We got all grown up and joined the National Trust as a family. I'm so glad we did we've already had some lovely days out as a couple and as a family. The children really enjoyed Durdham Park. I think Eloise the most she loved the house as she enjoys history. They also liked the freedom of playing in the grounds, hiding in trees.

                        

Also my very clever big girl Leah got her GCSE and Btec results 3 A* and 5 A's, 4 B's and 1C . Very proud of all she's achieved xxxx

SEPTEMBER - birthday month for me and Eloise. Eloise turned 14 and myself.....45 !!!! 

                                    

Eloise with her Boofie dog from Warren, she had a great day and enjoyed TGI's for lunch as S and J were down for the weekend. She later went in lunch and cinema trips with her friends.

We enjoyed, well most of us a trip to Blaise Castle one afternoon and the children had finished on the playground equipment and we'd had a coffee we went for a walk to part of the castle. Henry had a mega red rage as the girls climbed onto the window ledge. I think this was Warren's first major experience of Henry at full ginger power ! He survived but with perforated ear drums ! 

                   

Finally finished a little DIY project in September, I had big ideas of all the house Maintainence I was going to do but as usual life and enjoying it got in the way ! I'm still happy with how this little hallway area looks, just need a new PC as this ones ancient ! Sad to see it go as Eloise was given it by Make A WIsh.

         

OCTOBER- another busy month it seems those with a half term in them always are, so let's start on the 16th of the month Leah my first borns 17th Birthday eeeccck that makes me feel so old, how did my baby get that old ?????

                               

During half term Eloise went on a PGL camp with Gosh transplant team and 8 other teenagers, she had an absolutely incredible time and loved every minute and made some great friends in the process. 

         

It was at this time I met R the mum of Z Eloise's donor, an incredible meeting with a wonderful lady, we hope to meet up again in the New Year. 

During half term Warren , Millie, Henry and I went to Wales. On the first day we enjoyed St Fagans , a museum of Welsh life, totally free and worth a visit. Lots of little houses, shops, businesses etc rebuilt on site . Great history , nice gingerbread too ! 

                 

We stayed overnight in a Premier Inn family room and enjoyed plenty of food ! The next day we went to the Big Pit a mining museum. I think this was my favourite, so interesting and great to be able to experience in a small way what it was like going underground into the pit, so , so dark without your helmet light on, good job we did have hard hats as I bashed mine a few times ! 

        

NOVEMBER - I think the highlight of this month has to be our trip to London, we had a great time. As we'd been invited to the Gosh Christmas party on the Sunday we decided to make a weekend of it and S booked two hotel rooms for us. On the Saturday we went to the Imperial War Museum, this was somewhere Eloise and Warren really wanted to visit and they weren't disappointed. It was great, we are so lucky to have such amazing museums to visit all for free. Very thought provoking too.

     

                        

In the late afternoon S took the three children to Covent Garden and to TGI's for their Evening meal. So I thought I'd take Warren on the tube to Oxford Street for a meal and then a stroll to Covent Garden. Poor irish hadn't been to London much I think the tube journey and subsequent scrum trying to get out the tube station freaked him a little. Have to admit there was a sea of people and you had little control over the direction you were taken in ! I tried my best to find a restaurant I knew but in the end we ended up in a very lovely Italian, sadly Warren's first lasagne wasn't warm so a replacement was requested. They offered free drinks but we refused but in the end we both got very delicious desserts free of charge. As town was so busy we went back to the Marriott, meeting S and Millie in the bar. Free drinks for executive guests so S and Warren made the most of this and clocked up a fair few Stella's before time was up ! 

      The Gosh party was good the next day too, good to catch up with everyone, good food, kids liked their gifts. So I'm glad we made the effort. 

           

                            

                         

DECEMBER -  a busy month made busier by my bag swap trip to London ! Lots on at the children's school, dance Evenings, class assemblies, parties etc . Our calendar was pretty packed ! Warren and I managed a trip to Newport spending time with one of his brothers and his two sons. We stayed in a Premier Inn and enjoyed a lovely meal together in the Evening. The next day we went for a lovely drive a long the coast and ended our day in Tyntesfield NT, we had a cream tea and a wander around the house and grounds. It looked lovely all decorated for Christmas.

  

       

                                       

For the first time since living in Bristol I made it to the Bath Christmas Markets, I only bought my dads present from the market a metal Heron garden ornament. But we enjoyed wandering around and had a good meal out. We used our two together rail card for the first time, jeez we're middle aged ! 

        

I won't waste time blogging about Christmas here as I think I pretty much covered that in my Alternative Christmas log post. We've had a nice few days together as a smaller family unit since and it was lovely getting Henry back yesterday, we missed him. I think S will want to take him again for another break but at the end of the day he's his dad and it's good he's taking an interest. I think for the girls it's different and they'll not want to go to his home. 

    So 2014 you've been kind to my family , we've got through you unscathed , Eloise's health has been good, we've had no major mishaps and the victorian money pit we live in hasn't been too costly. I feel very lucky.

 2014's major changes occurred in my own life firstly with me getting my social life back and secondly my first new relationship in over 20 years with Warren. Things are going well for us, which is nice. We've still a lot to learn about each other and that's a good thing, it all takes time and we've got that. Looking forward to more "dates " and spending more days as a couple and as a family. 

2014 brought good times and sad times for my #TransplantFamily. We celebrated people receiving their call, we celebrated mile stones and anniversaries , we celebrated everything that was possible since transplant and things achieved from new babies born to transplantees and books of survival written . We hugged each other tightly when transplant calls didn't come in time and when the fight to survive post transplant became too much. It's not easy but we have each other. My wishes for 2015 that my lovely friends who are waiting receive their calls and get the perfect transplant with a text book recovery. For my friend pineapples son to receive his second transplant. For everyone to stay happy and healthy xxxx

My own wishes, I just want an easy life ! I know don't we all. I guess 2015 is the year I'll get divorced in just 4 years since I separated. Hopefully all the finances will be settled soon as that's been hanging over me, I want that sorted. Yet again I'll say I want to decorate the house, maybe this year I will ! So much to do but maybe I've got someone who will help me now so it won't be such an enormous task.

    I want my children to be happy, settled, content and ultimately happy. I want Eloise's heart to stay healthy, I also hope to meet R her donor's mother again this year. 

I want to take good care of myself, my own health.......better keep going to the gym then ! I actually think blogging, zoning out in the bath and going to the gym have saved my sanity. All giving me "me" time, so they'll continue in 2015. 

    So thank you to my friends for being there for sharing all the good times this year, I hope we have more fun next year. To my #TransplantFamily I love you all and I'm so glad we have each other #UnitedWeStand. To my family , five is still a pretty magic number and I love you my four babies very much. 

                                     

Here's to 2015 bring it on..........

       

     

 

     

 

     

             

   

      

      

      

      

     

Lost

As you all know I had a huge Miranda moment this week and had allegedly lost my bag containing amongst other things a much loved dress and ultimately a very precious Pandora bracelet. Even before I remembered my bracelet was in my washbag I was fairly upset, I absolutely hate losing things or my belongings being broken, I feel so unsettled until they've been fixed or replaced. Then I had that sick to the pit of your stomach feeling when I realised my bracelet was lost. Every charm either bought for me to represent a person or an event in my life or carefully selected by myself for a reason. After the initial shock and upset the more practical side of myself kicked in these were things I could buy identically again or at least something similar again. But actually I didn't want to, it wouldn't be the same rushing out spending £500 on a bracelet the charms wouldn't be the same ones, they wouldn't have been given with love like the originals. I made a plan I would possibly buy new charms to represent those important things in my life, my family, Eloise's heart transplant and her donor angel. I felt settled with that decision.

Then I got to the "no one died " stage we had a good weekend, everyone's happy and well. I've been through much worse in life, Eloise was "broken" on more than one occasion , quite a bit broken for a year. I remember easily how unsettled I felt, that gnawing feeling in my stomach, the feeling of dread and impending doom, it was horrific. I don't want to go there again but I guess every cardiology appointment makes these feelings resurface. If anything it makes you appreciate the good times, we had a great family weekend, lots of memories made. What is more important than that ? Not a band of silver beads for sure. Now if I lost my camera..........I'm a camera addict, I can't bear not having my camera with me, I like to have the option to capture every moment. I guess the pictures I take just reinforce the memories we make, capturing a little bit of a special day or moment. 

                                    

                           

 We had such a great weekend, for some I think it was odd that S, Warren and I spent time together with the children. I think it went really well, I know Warren feels that way I hope S did too. The two men had a few beers together in the bar, we seem to have a souvenir Stella Glass in the house !  We all  enjoyed the museum ( I lie Henry wanted to leave after an hour and Millie had a slapped arse face ) very much and it was great to be amongst our friends at the Gosh Transplant Party. Eloise was very happy as were Millie ( inbetween diva strops) and Henry ( no red rages ) Thank goodness for level headed Eloise ! 

             

                        

                     

       So the best things in life aren't things they're people and people can't be replaced.......except Ex husbands ! I'm lucky I have all those who are precious to me in my life, we came close to losing Eloise but she's here living life to the full. I cannot imagine life without her or her siblings, it would be too painful, a missing piece of my family jigsaw. While I cannot predict the future, that's probably for the best. I can say we'll enjoy every precious moment as we got close enough to losing Eloise to realise the fragility of life and that the only certainty in life is death. I wouldn't want any of you to go through such a loss or near loss but I do want you to appreciate every day as a gift. Sadly in the World we've been thrown into there are no guarantees we've lost friends and friends have lost their precious children. It's just so bloody sad, impossible to understand why, you'd drive yourself mad overthinking all the whys and what ifs . I just wish transplant was the cure and that the new heart lasted for ever, maybe soon because of medical advances it will be the miracle we all dream of, for now I'll dream of Happy Ever After for all four of my darling children, Leah, Eloise, Amelia and Henry, my World , My life xxx

         

Normality

Normal Family Life what is that ?

         

       

 For us, for now ( still cautious you see ) we've entered a period of calm. I can still feel a little edgy at times and unsettled but using strategies I now have in place I can calm myself. Water seems to be the answer, the bathroom with a bath bomb, candles, soft music and tea or more recently the very relaxing pool at the gym. I'm enjoying my time out at the gym too, absorbed in my music and calorie busting !

    

   We've done lots of lovely things as a family and have so much coming up to look forward to, it's quite an exciting time. Our household is often expanded now, we're more often than not a family of seven, my Henry is no longer so outnumbered ! I think it's been good having Warren and C around. We  all compliment each other , it works in a dysfunctional way !!!! Although at times I feel I have six children, I've got all of them an Advent calendar !

 I'm being well looked after by Warren, I found this quite hard initially not sure I'd experienced being cared for to this degree for twenty or so years if ever in adult life. I probably pushed him to the limits and caused him a lot of frustration in the initial months, poor man ! I'm determined our relationship remains balanced though and that I keep my independence and my social life. I'm not prepared to give up my own life this time and would hate Warren to give up his hobbies etc too. We're lucky as we get a good mix of time on our own as a couple, family time and time away from each other. I think that keeps our relationship working well. 

             At the beginning of the year I had a list of jobs I wanted to do on the house, it's no smaller ! Time just got away yet again and better options came along like going out ! I've only done the downstairs hallway. I do have a growing jar of money for the Playroom refurb fund, will change that into a games room etc in the New Year. With better shelving for Henry's toys. I didn't start any major jobs for a few reasons, this being a Victorian property nothing is ever simple, it's nearly Christmas and also I'm starting to sort out my divorce so financially it's harder to see what cash is available at the minute. So hopefully in the New Year, we'll start a room makeover or two !  Let's not hold our breath though ! I keep booking weekends away ! 

      I'm hoping the divorce and financial agreement is sorted soon, don't want to line the solicitors pockets with my decorating fund. It will be good to get divorced it's been over 3.5 years. I need to say those words Ex husband now ! S and I get on alright so fingers crossed things run smoothly.

               We're off to London Today on the train , Warren, Eloise, Millie, Henry and I . We'll meet S at the Imperial War Museum. So looking forward to seeing the revamped museum, we're so lucky to be able to see such impressive collections for free. Eloise is studying WW1 and WW2 in school so she's very excited as is Warren ! Tonight we're all staying in the Marriott ,Maida Vale I think as tomorrow we're going to the GOSH transplant party. Will be good to catch up with the #transplantfamily. Eloise will see some of the teenagers she went on camp with. I'm hoping S, Ŵarren and I all get along for that length of time, otherwise it might be interesting ! 

   Next week brings us into December ,I'm sure the childrens activities will increase 100%. Leah's Saturday job in Whsmiths usually means Sunday and a couple of evenings too. Millie is in two dance Evenings next week, so Eloise and I are watching on Wednesday. I have just 6 shifts left at work, so plenty of time to get organised......maybe. Childrens gifts are nearly sorted but I'm really struggling with my parents presents. I've no ideas at all. Mind you I'm not sure what I want either ! I'll write the minimum number of Christmas cards I can get away with. Not really thought about food, except the stash of M&S biscuits and tubs of sweets....got my priorities right ! 

     No hospital appointments except bloods for Eloise's Tacro level in a week or so, we used to go to Gosh clinc mid December which wasn't the easiest of times but we've now gone to January as that's when Eloise had her Angio this year, how can that be 10 months ago ! Has this year gone crazily fast or am I just getting old ? Time going fast can be a little scary when you are told your child's condition is life limiting but I'm positive we have plenty more sand in the timer and I can tentivly look into the future.

                                   

 

        

Organ Donation Thoughts

We always have Hope.....

       

        

Organ Donation is a huge part of my life now but I guess like many I'd not given it much thought over the years. I did carry a signed Organ Donor card though in my navy Filofax ( remember those ?) from 1989 before registering as a donor electronically . 

    I guess I'd seen renal transplant patients during my nursing career as an adult nurse in Exeter and a paediatric nurse in Bristol and I thought some of the patients looked pretty rubbish , unwell really even a few years post transplant. So when the word transplant was used regarding my own daughter I freaked a little, thinking of the steroidal faces complete with nasogastric feeding tube of the ill looking renal transplantees. I know, I know, I'm probably homing into a minority group and most of the kidney recipients were fine but I guess worse case scenarios stay with you. I really didn't know if I wanted Eloise to be transplanted, what was the point ? What was I signing up for ? But as your child continues to struggle to survive against the odds you owe them not to give up either, so second opinions are sought, referral to a specialist transplant centre made. 

    We arrived in Newcastle, straight away our assessment to see if we could cope with a transplanted child emotionally begins. I guess that's the hard bit you are literally bombarded with information, so much to take in, survival statistics, complications for something that might not even happen. It doesn't matter how much you need or want a transplant for yourself or a loved one someone has to consent to their loved one being an organ donor. The donor has to be a match for you in blood group, size, antibodies, CMV status etc not the other 263 people who are also currently listed in the UK and your clinical need the greatest if the organ is suitable for more than one person. When you think about it, it's incredible to think a transplant ever goes ahead but thankfully they do. I was asked pre transplant whether I wanted to meet the family of a boy who was recently transplanted and about to be discharged home. I declined. Maybe I should have said yes but just because I wanted Eloise to have the same chance as him it didn't mean it would happen.

 I cannot imagine how bloody tough it must be waiting for a transplant . Eloise arrived in Newcastle on the 5th of June over the next couple of days she was assessed but due to a line infection not listed. Then on the 9th of June a heart became available for her and she was transplanted on the 10th. So no wait at all just 24 hours on the top of the urgent European transplant list. Things are a little different in the heart transplant world now as there are mechanical hearts and devices to bridge people to transplant. Lvad's, bivads, Heartware and Berlin hearts to name a few, these weren't available 12 years ago. So people are able to "live" and wait longer. Some of my friends with children have waited in hospital for 9 months, separated from their other children, partner and friends. Life and living like that is tough, it's not normal, it's relentless , draining, depressing but you have no choice, just the hope your child's call comes.  

         Eloise was lucky her call came at just the right time, she escaped the ECMO machine and the complications that being on one of those can bring. Eloise's recovery was quite a stable one, pretty text book recovery heart transplant wise. No complications, off the ventilator,  wires out , drains out and onto the cardiac ward. I guess it's only recently since "watching" others post operative recovery that I can truly appreciate how stable Eloise was , no blips, no backward steps, no scares. Just steady progress that took us back home. Yes very lucky indeed. 

 So I guess at times when I'm angry that this happened to Eloise,  a simple childhood illness destroyed her heart, I have to think of all those waiting for heart transplants. Families so desperate for the same chance as my Eloise has been given. They want what I have because it means their loved one stays alive. It's been a good life too, I know there was a year of stress but 11 years of good, fabulous illness free health prior to that and maybe having the blips pulls you up a little. You take more care with medicine timings, you get more blood tests and you become more vigilant. 

   The transplant roller coaster is a tough one, loads of ups and downs, with no getting off ! But I'm glad my daughter is alive and hey Eloise and I love a good rollercoaster ! 

        

         

  I just wish there wasn't such a shortage of organ donors, that people didn't have to get so desperately ill before their call comes. I wish three people a day didn't die waiting. God I want all my friends that are waiting to get their chance, life is the greatest gift of all and one Santa cannot deliver sadly. So my love and thoughts are with those special to me who are waiting and all the people in our transplant support group that need a transplant right now. Keeping positive for you all as we always have HOPE xxxx

The Meeting

The Meeting

                          

Part One - Before.

   Imagine meeting someone for the first time , someone you've thought about often, if not daily for over 12 years. Someone whose life became entwined with your own just because they answered yes to a question. Someone who saved your child's life while their own child was hooked to machines dying, brain stem dead. Tomorrow I'm doing just that and I'm excited, nervous and confused as to whether it's the right thing to do. 

        I've never had any real desire to meet this lady, a little worried as to where this meeting may lead us. I guess a lot of donor family meets recipient family stories we get to hear about are played out in the media. Sometimes I've not been comfortable with what I've read. One story in particular has always freaked me a little, an American story, where the donor mum has wanted to hear her daughter's heart beat one more time. So when they meet she uses a stethoscope to do just that. I know that for many people this isn't an issue, they'd be happy to let this happen. I know for me it's just not going to happen. 

I began writing to R straight away, the week after Eloise's transplant, sending updates and photographs when requested by the donor coordinator. I have subsequently found out Rebecca never asked for these personal updates and was content with the yearly updates donor families can have via their coordinators a basic yes they are alive and doing well. She most definately never wanted a photograph ! In fact she couldn't look at them but her husband S wanted to see Eloise. I'm saddened by this as for years she must have thought I was pushing Eloise on to her. We are going to look into this . After 9 years R wrote back to me. I have 5 letters now in a drawer. We no longer write to each other as around this time last year R found me on Twitter as we followed the same account. We email regularly several times a day , some days and at the least weekly. R was, is very supportive of me and Eloise, she was great during all the blips, like many she'd never considered the implications of post  transplant life but has been happy to learn. From our emails our relationship has grown and strengthened. We decided at some point we'd meet just the two of us, mother to mother. No time scale was decided, we just knew one day we'd meet. We also discussed Eloise and decided meeting her was not an option at the moment.

      So we just plodded along until last week, we got brave ! I'm taking Eloise to London tomorrow as she's off on a PGL camp with GOSH transplant team and a group of teenage heart transplantees. I asked if R lived near London. Then a meeting evolved from that, it seems like a golden opportunity as I'm in London anyway. We'll meet for coffee, chat and see how the day goes from there. I'm thinking we'll get along in reality as we do virtually but who knows. I guess it's just time to find out ! 

      Not sure if I'll sleep much tonight , but hey what's new ! Outfit all sorted, what do you wear to such a meeting ? I've gone for a frock, and my burgundy shiny shoes, I needed clothes that make me feel comfortable and happy. I can hear a certain man saying "Women !" at this point .

Will we hug ? Both of us have confessed to not being very touchy feely

Will we cry ? I really hope not, by "talking" for nearly a year I hope we are past a lot of the raw emotion, need tissues any way as I'm sneezing like mad at the minute ! 

Will we have anything to say to each other ? Please no awkward silences ! I'm hoping we can chat freely with each other. 

Part Two - After

Yesterday was so the right thing to do, it had to happen the time was right for us both. Eloise's health is back to normal, she looks and feels amazing and her tests this week confirmed this and reassured me. My life is in a really good, settled and quite normal, I guess , place ! R was also ready.

     As Eloise's coach was late R window shopped and got a cup of tea while she waited for me. I walked to our meeting point and saw a lady sat down that had to be her. I approached, she looked shocked to see me, we hugged and I sat down. I asked about ordering tea but R said she needed to move on, too unsettled at this point to sit and chat. So we walked, I had pre warned her that I wanted to walk so our shoes were comfy ones ! I'm so glad it was a dry day as we walked initially to Covent Garden, chatting all the way. Of course it was very busy . In the end we found a small independant cafe so I could have lunch and we could get a drink. We stayed until the cafe shut at 4pm. Conversation flowed no awkward moments, no upset, lots of remembering, sharing and laughter too. It was like we'd always been friends, two halves of the same story. 

    I'm not going to share what we spoke about that's just for us but we both said we'd share this information with our friends. It rendered us speechless and is such a huge coincidence. R told me which hospital she worked in so I said I used to work in Edgware General '94-'96 on Rainbow ward the paediatric unit. R was working there at that time, I even walked past the building she worked in , she's a haematology nurse and the Cord bank was in Edgware. I then said I lived in Edgware as well in a rented Terraced House. R asked where so I told her. Can you imagine that for a year we lived on the same road ! '95-'96 R and her then partner S owned no 55  and we rented no 33 so just 12 houses apart. We probably passed in the street ! What are the odds on this ? It's just quite unreal. 

     So we had another cup of tea as R wasn't ready to let me go ,after walking through Leicester Square and Piccadilly Circus . We then caught the tube at Oxford Circus and said our goodbyes with a hug at the Baker Street tube stop where R got off. She left saying she was really glad we'd met, she had no desire to meet Eloise and felt satisfied with our meeting and therefore no need for us to meet again........her 6.30am email says differently this Morning, she hopes we can chat over more cups of tea in the future. 

If only........

                                     

If only........

       Wouldn't it be wonderful to be lucky enough to receive an organ transplant and that be the end of it . Transplant surgery , re plumbed donated organ , feel 100% better and go and live a healthy long, long life into old age.

 Whereas in reality you are never far away from the thought that this transplanted organ may fail you or your loved one. 

     Your daily medication for a start , a constant reminder that life is now different, that you rely on those pills to keep you alive and well. But do they keep you well ? Immunosuppressants can actually make you ill, too high a level in your blood stream you damage your other organs , kidneys for example and you catch every germ going. Too low again you're ill as you reject the transplanted organ. Such a fine balance and to achieve that balance you need regular blood tests. Who can say they like being stabbed with a needle ? Then other medications are added into the mix, statins to keep your cholesterol low to help prevent coronary artery disease. The further down the transplant road you get your pill pot selection seems to increase. Eloise now needs Amlodopine to keep her blood pressure down and Ivabradine to keep her heart rate down. 

         

      Anyway Today Eloise had clinic an anxious time for me but thankfully not for Miss Horizontal ! First hurdle the ECG , yippeee nice tall peaks , good heart rate, you get used to looking at these things. I know what to look for , what indicates rejection. Low voltages. Just the echo to get through as Eloise passes her examination on seeing her consultant, he's pleased with how she looks etc, heart sounds, liver, etc. Find myself holding my breath, gazing at the screen for signs of increased fluid. The tech seems confident, doesn't call anyone in, remains chatty and in eye contact all reassuring signs , believe me, I can read these people. Echo is reviewed by Dr M and all is good, great heart function. We escape clinic next appointment is in 2015 in GOSH, that sounds good, back to our normal 3 monthly routine. Yep normal, normal for a Transplantee .

      If only..........

  Eloise hadn't caught that bloody hand, foot and mouth virus. 

    I'd rather it hadn't been this way of course but I know we got the best possible outcome in a dire situation. Many people don't even get this second chance, time runs out they die waiting. Eloise has had 12 amazing years, normal childhood. I want more of course I do, we will spend our time bouncing from one appointment to the next. I can't look into the future........can you ? In case my daughters not in it. I'm afraid of that. So Tonight I'm reflective , I'm thankful for all I have, for the life of my precious girl, she is special and I love her deeply. So come on medical advances, come on science, come on drug developers, come on researchers please , please find I way to keep my daughter and our transplant family fit and well for many , many decades. My daughter has the determination , we just need your skills then we'll be invincible !  

                                     

   If only.......

If only we were all organ donors, if we all signed onto the Organ Donor register, maybe more people would get their chance. Thinking of my friends with children waiting desperately for their call, living in limbo at home or separated from their families while they wait in hospital, hooked up to machines to keep them alive. So, so hard, thinking especially of two families who are waiting for second transplants for their sons . They've experienced life post transplant only to have the organs fail and be rejected. Now they wait for a more complicated second miracle. 

   

The Future , is it bright ?

       

It's 8am and I'm sat here in a beautiful Hotel suite in Chepstow, which I have been lucky enough to enjoy this weekend with Warren. The hotel is set in the Country and it's ultimately a golfing venue. We've eaten out, shopped a little and enjoyed the hotels leisure facilities and bar. The jacuzzi just highlighting the fact a hot tub needs to feature in my future ! 

        

       Living the dream of many people with demanding families I guess ? Child free, 100% adult time. No demands on my time, no nagging , no assault on my senses from multiple electrical devises , no arguing, no fights to referee. No noise really right now, except the odd bird chirping. How is this achieved ? Through heart ache and pain initially I guess ,my marriage break up and ultimately my husband's affair. Now we're 3 years down the line, life's moved on, it's evolved, improved and it's a better life. For me, my children and for S I'm sure. In fact S arranged and paid for this hotel stay for me and Warren with his hotel loyalty points, and we got an upgrade on arrival. So we're here and S is where he should be too, looking after the children and spending quality time with them. We all win, all 7 of us in this equation. Not sure S's partner is ever really a winner , she's alone every other weekend.

            I'm reflecting a little on my marriage Today , I suppose wondering if we'd spent quality time like this weekend I have had with Warren would it have survived, adult time being S and Bec, being a couple not just parents, mum and dad ? In our case I think not, there was an underlying incompatibility from the start of our relationship which we both ignored as we wanted each other. Both admitting we were the opposite type to the person we'd normally be attracted to. I guess for some opposites do indeed attract. So my friends if you can get some child free time spend it with your other half, enjoy each other's company again, date. I do believe in date night, perhaps it should be added into the vows of marriage ? 

     Right as usual I've digressed from the title The Future, my future, my families future. It's looking clearer now, we're going to be fine aren't we ? 

Back to living the dream , I'm living it with a thin line of nightmare running through it. Why do you think I'm an insomniac ? Something obviously keeps me awake, something(s) worry me. They can be simple day to day worries like the boiler being a little dodgy and clanging away to Eloise's health. So a whole range of things and problems. Some you'll understand others I hope you never have to. I guess I still over think things , let them whirl around in my head before putting them once again in order so a sense of calm and often common sense can prevail. I guess it's worse when you are on your own. I know I have Warren in my life but I'm fiercely independant and possibly a little too English ! 

Eloise, she looks great at the minute but she always does even during a medical emergency. I'm hoping things are all good with her heart and the events of last year are behind us. Hopefully she'll have her bloods taken next week and her Tacro level will be stable and on the 22nd we have an appointment in Bristol to see RM her cardiologist. I need her well, I need her and her transplant family to have a future. We need medical advances, new procedures, research and new medication. I believe these things are possible, I have hope. My girl will have a future. At school she does dance instead of PE at the minute and her teacher thinks she is better than the GCSE students and wants to enter her in a competition, those of you that know Eloise in reality will smile at this. We often joke she is Miranda Hart's love child as she's so awkward ! 

My other three gorgeous children are doing well, Leah has her first Saturday job, she'll enjoy that and develop new life skills. I think she's destined to have a bright future as long as she puts the effort in and grabs it. Millie has settled in well at secondary school, she's made new friends and is loving, dance, band academy and choir, I think this school which specialises in performing arts will be good for her. Although I'm not too sure of her dream to win the X-Factor before she leaves school ! Henry, my lovely boy, he gets more delicious every day, he'll be fine . They will all have bright futures, I'll make sure of that. I've lone parented them from the beginning and so far I'm proud of what they/we have achieved, it's the best job ever being mummy.

          

        

     Another worry is our financial future, I'm sure that's the same with many of you whether you are married, divorced or single. I'm meeting with a solicitor on Friday for the first time as S and I work out our financial settlement and divorce. So far S has been good and I'm hoping it continues. Just worried on a few issues, so they'll need to be discussed. They may alter our/my future. I need to know if he is financing the children going to University. I already know I won't be able too, I don't think he should deny them this opportunity . He enjoyed his time at uni, I want that for my children. My other thought is how much of the Maintainence is for the children ? How much to maintain me as his Ex wife ? Is my financial future dependant on me staying alone as in never living with anyone let alone remarrying ? He can have the relationship he wants but can I ? I know money's not everything but it bloody helps. I also know real love conquers all and there will be a way forward , a future.

      The future, I try not too look to far ahead incase I don't like what I see but I think it's going to be ok. Health is the main thing I want for my family closely followed by happiness, if we have both of those everything else is a bonus. If it's anything like the present I'll have a good life and so will my children. We are very loved by wonderful people and that's a privilege , they help shape our Future xxxx