Let's get personal

                         

How true is this quote ? If you aren't part of the transplant world how much time do you spend thinking about organ donation ? Any time at all ? I guess if you're my FB friend you're bombarded with it daily , I make no apologies for that, it's a huge part of my life. 

     In 1989 I signed the organ donor register,  when I started my nurse training, never for one moment thinking I'd be relying on organ donation to keep my own child alive. I signed up because I believed if you can help someone after your death then why not, what's the point in destroying healthy organs that could save someone else's life. 

So fast forward quite a few years and I'm being told my previously well toddler has myocarditis , which led to dilated cardiomyopathy all from a simple childhood illness Hand, Foot and mouth. Her only chance of survival a heart transplant. I needed someone to say yes to organ donation, someone that had the same beliefs as me , that organ donation was the best outcome from the tragic passing of their loved one. We know Eloise got her call. Imagine if that call never came, my daughter would have been one of the three people a day that die waiting on the list, a statistic, a cruel one. This does happen, it's real, just this week a four month old baby lost her fight while waiting on the list for a heart transplant. The call never came it's just so awful. 

 

         What I can't understand though is why when questioned an impressive 96% of the UK public agree with organ donation, that's just amazing right ? 

Well actually no it's not because only 33% of them have bothered to sign the online register. It takes just two minutes a few clicks, just a TV ad break, a game of Candy Crush, a selfie, watching a YouTube video or any of those other things we do daily while wasting time. We must all have two minutes to spare ! Scrolling down Twitter or FaceBook feed how many times have you already done that today ? 

Did it enhance or change you life in any way ? 

Do you feel fulfilled ? 

Imagine becoming someone's Hero , that's what organ donors are.

      So come on guys get off social media and pop over to NHSBT and sign the organ donor register 

https://www.organdonation.nhs.uk/register-to-donate/ 

It's easy , I know you're all capable. Do this for all those waiting for life saving and life enhancing transplants. 

    If you need a reason I know plenty of them , all real, all with lives on hold as they wait for their call to come. Do this for Taylor, Eloise's friend he's nearly 16 years old, he used to be sporty , fit and active but now he can't even walk upstairs without being short of breath. That's no life, he desperately needs a second heart transplant , he needs his call. Waiting takes its toll on the whole family, life's not the same when you're in limbo. I'm thinking of my friend Donna, Taylor's mum, my pineapple she's an amazing lady but this is hard for her and there's little I can do to help. But if reading this inspires you to sign up I guess I've achieved something small. For Donna........

                           

So there you go you know how I feel about organ donation, ever so slightly passionate ! It's National Transplant Week coming up guys and this year they've moved it to September to coincide with Eloise's and Taylor's birthdays I guess 😊. Eloise's 15th birthday is on the day it starts the 7th, her 14th extra birthday because of organ donation. You could get yourself a donor card to honour Eloise's and Taylor's birthdays , the only gift needed is a transplant for Taylor so that will be the cake candle blowing wish this year. 

       

The Hooks of Reality

       

 

Here I am on the Morning of our last full day in Turkey although we don't leave our resort until 9pm tomorrow. 

    It's been a relaxing break, I've read 6 books so far and I expect the tally to rise by at least another book. I've enjoyed swimming which is quite necessary here as you need to dip to cool down. We've had some great nights and and enjoyed delicious meals. The company has worked well for us all. I've slept well every night even if I wake early the sleep quality has been good.

       

     Now however I'm restless, awake extra early as my minds gone into overdrive. I'm thinking, working things out, mulling things over. My stomach is churning and unsettled and being an unadventurous eater I cannot blame the food ! 

I'm envisaging the large pile of letters waiting for us, a lot will be junk mail but there will be bills to settle and a letter or two from my solicitor. One a demand for payment for time spent on my case the other a proposal to put to S my Ex regarding our financial settlement. I need that settled so badly but appreciate it has to be done to ensure my children are provided for in the best way possible, the outcome needs to give them the security they deserve. 

      Then I'll need to be super organised as I think S is coming to collect Henry and Millie to take them to his house for a long weekend, I don't think Eloise wants to go. She'll need to rest anyway as we only arrive home at 3am Tuesday and we'll be on the 8.34am train to London on Wednesday. Not the best thought out time for an appointment but it's already delayed because of our holiday plans. So it's nearly GOSH Transplant clinic time , it always fills me with dread. Eloise has had puffy ankles while here only twice and once was post boat trip and the other within the first 48 hours of being here, so I'm hoping that's just heat related as it resolved quickly. She also has a bit of prickly heat but looks a picture of health , her factor 50 suncream has done the trick she's as pale as ever ! She's spent a fair amount inside on her Tablet, watching TV , eating chocolate delivered by Warren and partaking in her favourite pastime sleeping ! I'll be seeing my lovely friend Pineapple at clinic and her son who desperately needs a second transplant, looking forward to seeing how much Tay has grown and giving Pineapple a huge squeeze. That's the good part of clinic catching up with special friends who understand the life you are living. Never totally free from the shackles of transplant but desperate to make sure every day is a happy one. Forever thankful that your child got a transplant in time but forever fearful it won't work forever. Some days it's hard to get that balance as fear freezes you, then I look at Eloise and see a happy face , last night she was whizzy around on a fairground ride, enjoying herself. If others are happy she's happy, she asks for nothing in life more than that. I think she's amazing , her take on life is refreshingly simple if not sometimes of the wall ! 

                                       

      

   So more memories have been made, more photos, must do an album rather than just sticking them on Face Book or leaving them neglected on a memory card. I have albums of pictures until I got a digital camera then they all stopped, I hardly printed any pictures, sad really. I think this will be a good Winter project, downloading , backing up and saving precious memories. 

  So enough whinging, writing it down has helped like it always does. Life's good and we're very lucky to have had a wonderful two week holiday in the Sun and to have spent quality time as a family, when Millie's not on the wifi 😉 Looking forward to more lovey trips away with my gang and more special days at home, oh and a good pot of Earl Grey Tea would be nice ! Might need cake and a Bake Off catch up on Tuesday, that's good for the soul ! 

Ordinary is the Key

       

    

Just an ordinary day in my house Today, children scattered all over the house. Eloise is downloading films onto her tablet. Millie is singing and playing the keyboard. Henry is engaged in some loud battle between piles of green plastic soldiers. Leah is chilling out making a video of her friends and Warren is watching a DVD . I'm relaxing in solitude, with a cup of tea while listening to a new album "This is Acoustics"  We've all consumed a hearty roast dinner. I like ordinary it's relaxing. Ordinary not to be confused with boring, it's never boring here ! S my ex joined us for lunch , see I guess that's not ordinary , but it works. 

       

    

          I'm content, life is pretty level at the minute, a holiday high is incoming which is very exciting. Of course I'm hoping a low isn't looming as Eloise has Heart Transplant Clinic at GOSH next month. But for now I'll push those pre appointment anxieties to the back of my mind, lock them in with the key and concentrate on making great memories with my family, my partner and my friend over the next two weeks.

 I know we are very lucky to be able to afford to go on holiday. It's something I desperately didn't want to give up when my marriage broke down. I think it always brings us closer together as a family, an intense regrouping session away from all the other day to day distractions. So I manage to save up for it all year around in a separate account and it's worth every penny. To be able to unwind, relax, read, eat, drink, swim and feel the heat of the sun.....

     As Eloise's illness was sudden we never put our lives on hold waiting for her to have a transplant it just all happened at once, diagnosis, intensive care, ventilated, transferred to transplant centre and transplanted all in three weeks. I cannot imagine not being able to make plans, I like plans, I like to book things, arrange things for us all to look forward to. You can't do that so freely when you're living on the transplant list. You cannot leave the country or stray too far from your transplant centre. You need to be "on call" and ready 24/7 . That must be incredibly hard, you become imprisoned I guess and life shrinks around you as you get more sick waiting, confined to your home or a hospital bed. Yet at the same time I'm sure you want life to keep ticking over, make memories and fill each day with hope that tomorrow will be a better day. How you stay sane I do not know, maybe you don't ? One things for sure you're never the same again. 

   So we are incredibly lucky I'm going on holiday with my extraordinary daughter Eloise, we are free to enjoy her life, and we do. Last night one minute we were planning to eat at home next minute Warren, Eloise and I were at Burger Joint an amazing local Burger Bar, because we wanted to, because we could . 

I just wish all our friends waiting for transplants received their call, organ donation is the key to opening up your life again. We will always be grateful for the extra 13 years of life given to Eloise and always hope for many more healthy years. ❤️

 Sadly organ donation figures were at an all time low last year and the list of those waiting just got larger. We need to do something about this as soon we'll be saying 4 people in the UK due waiting each day for an organ transplant. That's just too awful to contemplate. So let's make this years National Transplant Week the best ever, no excuse, join together and get as many new people signing the organ donor register. This year it's the 7th-13th of September. The 7th of September is Eloise's 15th birthday so if you want to get her a card make sure it's a Donor Card ! 

The Questions

The Questions -  

Heart transplantation is not considered to be a cure for heart disease, but a life-saving treatment intended to improve the quality of life for recipients.

                       

There have been many questions asked over the years about Eloise and her heart transplant, so I've put the ones that reoccur the most into this blog post. I guess it just clarifies a few things and yet again gives me an outlet to off load more thoughts .

 In the beginning I tried to shield many people from the reality of Eloise having a heart transplant. I didn't want to speak up or out about it, it was too hard, too raw, too emotional. Now I've got stronger, braver maybe ? Now I know it's ok to not be ok, does that make sense ? Ask me anything now and I can answer it, give you the truth but you have to make sure you want to hear it. Maybe for you it's better things are left unsaid ?

     

           When we came home from hospital for the first time after Eloise's transplant it was tough. You had those people that didn't know what to say, they avoided you. You had those that thought it frightfully exciting, well interesting, just wow, they wanted to know everything. One of these people was Eloise's Health Visitor, she arrived with no knowledge of heart transplant children but wanted to know the full "how interesting " story. So frustrating educating someone who should be providing you with support. I'm not sure if we ever saw her again !  

 

What was Eloise's  diagnosis , did you know she needed a heart transplant when she was born ? 

Nope complete surprise, that doesn't sound right, ahhhh yes not a surprise a bloody huge shock. Eloise was born with a structurally normal heart , she had a fetal echo when I was 20 weeks pregnant and also as she was 8 weeks premature her heart was checked again while she was in NICU. Sadly a mild childhood virus ( hand, foot and mouth disease ) caused a rare complication. Eloise had myocarditis, an infection of the heart muscle. This left her with cardiomyopathy , essentially an enlarged baggy heart that only functioned at 13%. When she was diagnosed initially there was a small glimmer of hope that her heart may over time recovered from the virus , so she was ventilated and given medication to support her heart. Sadly her condition deteriorated further until transplantation offered her the only chance of survival. 

Did Eloise have a whole / complete heart transplant ? 

Yes you can't have half a heart transplant but you can have donor heart valves. Eloise didn't just have a repair job she had a full engine change. Never one do do things by halves ! 

Do you feel sad when you think about someone dying to keep her alive ? 

Of course I'm only human, being a nurse it's been my role to preserve life not to take it for granted. But the sadness isn't all consuming, I don't think about it all the time. I guess I think of Zara and her mum Rebecca rather than Zara dying . It was much harder initially such huge amounts of guilt your child alive because another family's baby died. That's tough emotionally made even harder when you are dealing with your own precious child who has had major life changing surgery . Eloise was fit and well then boom, I have a child with a complex medical condition. A child who is now classed as life limited. I feel I have grieved for my own child as well as Zara. I feel bereaved as I have lost my healthy child and it's a battle to keep her well. I have to hand her over to health professionals for tests so they can reassure me that all is well with her transplanted heart. 

 Another scenario in this situation could have been two children dying from illnesses so I have to believe Eloise living is the best outcome for both my family and Zara's. 

Is she fine now ? 

      Tough one, easy answer yes thanks, but I'm interpreting "is she fine now ?" To not just mean Today . I'm thinking when someone asks me this they are thinking long term. So honest answer yes she's great right now ( leaning heavily on right now, today ) thanks. 

Deeper answer.......does anyone actually want to hear it ? Transplantation is wonderful but you swap one set of issues for another, it's a constant juggling act . The tests never stop happening, there's no cure, no lull really or respite from worry. It's not they've had the transplant now yippee all fixed. Wouldn't that be just fabulous ! Regular blood tests, echo's, ecg's, exercise tests and angiograms. Ahh the angiogram always lovely signing a consent form with risk of death as a complication ! Then the big whammy you get given facts and figures pre transplant of post transplant life expectancy. "Normal" children don't come with those do they ? When I was desperate for my child to live one more day hearing average life expectancy 5-10 years didn't seem that bad when I heard it 13 years ago. Now we've exceeded that things seem a little scarier but I think the new figures are 15-20 years. Not great, but progress. But statistics are so hard to hear, read, process. As well as life expectancy rates you get given percentage of how many heart transplant recipients live for one year, five years, ten years. She's not a statistic she's my daughter. Never just a statistic ! 

So yes, Eloise is fine but it takes a group of skilled people to keep her that way and her determination of course. You cannot take anything for granted with Eloise's health she can be really unwell yet show no outward signs, her body compensates so well. 

Will she always need to take medication ? 

     Until recently I would have always said yes and I guess she will always take a prescription or two but there have been medical advances recently looking into manipulating the immune system so perhaps one day anti rejection drugs and their side effects maybe a thing of the past. But for now popping a few pills in order to stay alive, fit and well is easy for Eloise and just part of her normal routine. 

Will she need a second heart transplant ? 

I just don't know, I've no idea why the first transplant doesn't work out as well for some , there seems to be no correlation with life style, etc as young children need second hearts . Then I know of other individuals transplanted 30 years plus and they are fit and well. If the Drs knew the winning combination everyone transplanted would be living longer. I'm lucky to know people who have received second transplants to get that reassurance it can happen again . The problem with being listed again is in my opinion the psychological side of things your naivety has gone, you're in the transplant world already, eyes wide open. 

How do you cope ? 

You'd cope too you know, what other choice is there ? You cannot give up on your child, seeing them fight so hard gives you the strength to keep going. I don't think I've regretted letting Eloise have a heart transplant . I've admitted before I was unsure whether to get her listed initially, thinking a life of hospitalisation but when she survived a flight to Newcastle I had to say yes to her being listed. I needed to give her a chance. I suppose we try to live for the day and enjoy each day, making memories when ever we can. Of course my mind still wanders, I'm still frightened I'll outlive my child, experience life without such an important part of myself in it, my baby, my child, my Eloise but she's here, she's happy, she's very much alive. I guess we never take life for granted , we enjoy our time together, we create memories and are quite spontaneous. Hence our house renovations are quite behind schedule as something better to do always comes first ! So to me living day to day can be a bonus, we appreciate what we have, each other. 

How do you live like that ? Knowing you could lose her ? 

What choice do I have ? Tell me ? 

We live a normal family life. Eloise pops a few pills in the morning and another handful at night, she goes to school, she comes home and sits in front of a computer screen, I throw food and drink at her, later she goes to bed. Repeated times five, weekends just involve more sleep and more sitting in front of a screen, with the odd reluctant trip outside. I know quite boring ! So just like a lot of her teenage peers. Four times a year she has an outpatients appointment if she's behaving they aren't too big a deal. I know lots of people who have to put up with more than that to keep their children well and alive. Of course when Eloise is blipping it's hard, while trying to be optimistic, fear sneaks freely into my head. Fear is usually boxed away and reserved for appointments. Then life's a little tougher, it's uncertain and can be demanding mentally and physically. Juggling, the needs of Eloise's three other siblings, family commitments, running a home and work can be difficult and exhausting but we've been lucky and we've only had one tough year since the first. 

                       

The Match.

        

          

A year ago I joined Tinder not looking for love just being nosy really. A kind of is this how you get more Twitter followers experiment. I'd thought briefly on and off about online dating but kept getting cold feet, worrying about the type of men I might meet. Wondering if I was putting myself and possibly my daughters at risk. Also being older online dating wasn't the way I'd met previous partners. So instead I went half way and joined City Socializer, to meet people, make friends, widen my social circle and maybe meet a man in more "normal" circumstances.  My Twitter follower experiment was short lived ( it did work though ) 5 days after joining Tinder I left. In that time I had conversations with three men, all swiped as a match. Very shallow really dismissing potential matches just on a few grainy pictures and a short description if you were lucky ! I swiped my way through many, wondering if I'd been too hasty , was I missing a potential gem ? 

                         

      Then there was Warren within hours of starting up a conversation we met, all be it very, very briefly in Cabot Circus. Warren was working, he wanted me to see he was genuine. Conversation via text continued from that, with Warren deciding he'd see me again ! 

Just a couple of days after that I flew to Turkey with my children for two weeks. Thank goodness for wifi ! Messages bounced back and forth several times a day as we found out more about each other. While the interest was very flattering it was a bit eeeeccck too, a bit full on and fast moving. I remember feeling a little anxious , what was happening here. I wasn't sleeping so then there was the email, I guess Warren got his own personal blog post and I off loaded my feelings in a way I know works for me.

                                                                    ❤️❤️❤️

 "Morning Warren, 

Thought I'd just try to explain a little more about my way of thinking. I'm not sure what type of women you've dated before but I guess as you're single possibly not the right ones. I'm different , I guess from many and that's not a bad thing.

             Obviously I've not found what or who I want in my life. I've dated two types of people I think. When young people with no ambition, no drive, no desire to move from their birth town, perhaps male chauvinistic tendencies . I felt trapped and suffocated by them. I had two two long term relationships and many shorter ones. But again no regrets I left home , moved away and trained as a nurse never returning to my home Town to live since I was 19 , so I thank those men and the ones that followed , I went to Canada I moved away again, because I could. Then S came along, work driven, clever, older than me (only by 5 years ) educated, ambitious and with a good standard of life. So I tried a man like that, but his work swallowed him up long days, drinking in the Evenings, stress, anger, frustrations. Whether he wants to be he's married to his job, he's a director for ***, if owns him. 

      So now I have to find someone who's the same as me in values, ambition, dreams, wants, strength...looks don't matter , but inner attraction does. I think no matter how good a person you are, if someone can't hold their own then the relationship becomes uneven and is doomed for failure, so they have to be equally as intelligent, experienced, driven, hard working, emotionally stable, financially secure, and most importantly.....fulfilled with their life and where it's going. It gets so much harder as we all get older. When dating you have to listen to your gut because the little niggles don't go away. I won't sacrifice anything again either, I cannot lose my identity or my feeling of self. The person I want to meet has to add to my life and enhance it, not change it .  

     When you are young and it's first time around, everyone knows the plan, meet him , 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, it's a big journey of self discovery and it's harder to know if someone is going to tick all the boxes,  I guess you just learn what doesn't work and move on more enlightened. 

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

      We all just want the same thing fundamentally, and that's to be made to feel special and someone who will keep trying to make us feel wanted and appreciated. Because women like me don't need the security, men have to find completely different ways to make us tick. 

          I see in you things I like great work ethic, hard working, you've moved your role forward, established your road show thing, training up new people etc. I like the passion you have for your hobby, totally not my thing but that's good, good to have your own life and interests. I'd worry if you didn't as I like what I do in my spare time too. 

   You value your family, I love that, you travelling to be with your nephew post heart surgery really struck me . My Ex has never attended any of Eloise's hospital appointments or been there during her hospital stays. I've done them all even when heavily pregnant or just having given birth, that's hard going as she goes to Great Ormond Street. In fact that made me a little teary. Ok I'm crying .I love how close you are to your family, it's so nice and quite refreshing to hear a man say that. Your mum brought you up well , I hope I do the same for my children. 

       So the point in this email ? I guess the things that I like about you are the things you've probably forgotten writing. I don't need fancy words, no need to impress me. I need to manage your expectations . Just think how amazing it is we even connected initially. Both only joining Tinder that week , me not even thinking of dating for over 3 years. Just going on it as I was curious really. Something made that happen. I wouldn't have let you onto my FB etc if I didn't want to get to know you. Obviously if I hadn't gone away we'd have had that coffee by now. We still need to do that, we will. You just need to say when you're free on the Mon ( 4th ), Tues or Wed. We'll take it from there. Hey and be bossy if you need to be that made me laugh last night . I like to laugh, but please no more cute and you don't adore me etc not yet. It's just a fantasy in your head, you need to meet me to feel like that.

     There you are I doubt you thought you'd get this epic email. I just want you to "get " me ! If you want to know more read my blog, I think you'd need to be really bored but you may have a bit of spare time ! 

http://eternal-optimist-hope.blogspot.com.tr

     You take care, make sure you catch some thieving bastards today please :-) 

Have a good day 

 Bec xxx

                                                                        ❤️❤️❤️

I can't say I've not had the odd wobble over the past year, I'd be lying if I did. I've not found it easy and why should I , it's been 20+ years since I last dated and I've got standards ! I'm sure I've infuriated Warren at times but I believe I've remained true to myself and he always says he likes how open I am, that good then ! I'll say it as it is, rather that than things rumble along.

 I've found myself a good man, one that cannot do enough for me, who looks after me well and has been great with my children. He has made an effort with my family and friends as well. So that's been our first year, it's been fun. I wanted someone to be there for me, to hold my hand, to hug me lots, hold me when I cry, make me laugh and smile lots. I've got that and more. 

                         

Family

 

       

     Family - what does it mean to you ? 

Wikipedia says - In the context of human society, a family (from Latin: familia) is a group of people affiliated by consanguinity (by recognized birth), affinity (by marriage), or co-residence and/or shared consumption (see Nurture kinship). Members of the immediate family includes spouses, parents, brothers, sisters, sons and/or daughters. Members of the extended family may include grandparents, aunts, uncles, cousins, nephews nieces and/or siblings-in-law.

                 So I have my little ( conventional ?) family, me and my four gorgeous babies and I have my extended family, mum, dad, brother, sister in law, one niece, one nephew, one aunt, one uncle and two cousins, quite a small family . Just enough really ! Then when I was growing up we called my parents close friends auntie and uncle so we have a few of those special people in our life. 

    Now though I have an extra family it's my #TransplantFamily included in that are donor families,  parents with children with congenital heart disease (CHD)  and cardiomyopathy or adults with these conditions. Pretty massive family ! Sometimes this large family becomes dysfunctional there are breakdowns in communication, one up manship , disagreements, personality clashes, things can either blow up or blow over. That's just it we are all different, we handle things differently , we perceive things in our own unique way and that's fine.....on the whole ! We just have a common bond, that is sometimes all we have and that's ok isn't it ? Thanks to social media we've managed to find each other easily at the click of a button. I think peer support like this is Facebook at its best. 

                                    

Through what happened with Eloise I have met the most wonderful human beings, people I love dearly. Their pain or their happiness becomes mine too, I feel for them , I understand. Without organ donation and transplantation these people wouldn't have walked into our lives. You know I wish viral cardiomyopathy had never ripped Eloise's heart from her but it did, I can't change that . No amount of wishing can change that so all we can do is make life as rich as we can. People , special wonderful gorgeous people have been our saviours, the medical and nursing staff, Eloise's donor family, our biological family , our family friends and our carefully selected bonus #transplantfamily. 

   

     Mentally living with a child with a potentially life limiting illness is tough, it's like a niggling toothache, not too severe but the pain never leaves you. You manage, you lock down occasionally to provide self preservation but sometimes it's good to talk and who better to talk to than someone going through the anguish too. I'm a real believer in peer support. It works for me , that and writing a blog . I'm so lucky to have such lovely people at the centre of my #TransplantFamily, I love them a lot, together this all becomes easier than being alone but still allows me the solitude I often crave. I don't find it intrusive , you can tailor it to your needs tapping into it whenever you want or standing back if your own life needs you too. When Eloise was blipping I found sharing everything on Facebook quite hard so cut back on the information shared with the masses this is when I turned more to Twitter meeting another "branch" of the #TransplantFamily ! 

     I'm so proud of my #TransplantFamily they're just awesome , you've all been given a glimpse into our World if you've been following my updates on the incredible Stacie. You just don't know how much I wanted her call to come, it had to happen, three dreadful years of waiting, hope's flame starting to flicker . I won't deny that it was hard to keep the positivity going but you have to believe in miracles and cling onto hope as without hope you have nothing. I guess we were all a little scared for you Stacie. Thankfully a perfect match arrived for Stacie and she's just rocked post transplant recovery ! How our #TransplantFamily united in prayer, positive thoughts, strengthening vibes to see Stacie through her surgery it was empowering . I feel we all celebrated each milestone with her ,very uplifting. 

 So together we unite to celebrate the good times, the post transplant milestones , the progress, great clinic appointments, exam success, weddings, new babies and heart transplant anniversaries.

                              

    Sadly there's always a downside, miracles aren't always available as transplants don't always come in time, they don't always work, time post transplant can be limited. Not everyone makes it and that hurts. In the last 24 hours I have witnessed on my FB the heart community pulling together to send love, thoughts and prayers to a little girl battling to stay alive post cardiac surgery. The miracle never happened and she passed away. The community will wrap their arms around this little girl's mum, they'll support her and comfort her. We don't all know each other but we all care. #UnitedWeStand. Life is unpredictable and at times like this it just doesn't make sense .

                                      

So my dearest family I love you lots, thank you for being there for us. I hope I'm there for you in return. Big squeezy hugs to you all. XxxxxX 

Dear Rebecca

Dear Rebecca, 

         We're nearly at that significant date again and I cannot stop thinking of you. I think of you stood in intensive care looking at your baby . I've seen a picture of her now haven't I so that image is strong. I admire your strength, I always have but knowing now that you held Zara in your arms while they performed a lumbar puncture that wasn't to aid her diagnosis or prognosis but to allow her to become an organ donor I'm totally in awe of you. You stared at that monitor willing her not to flatline, knowing that would mean you couldn't donate her organs. How I too stared at monitors, listening to them alarming, looking at my daughter, looking to her nurse for reassurance. I too willed Eloise's heart to keep on beating. We were in parallel situations at the same time, both facing what no parent should ever go through. Our daughters were dying, sadly time ran out for Zara on the 9th June and she was diagnosed as brain stem dead . Time was running out for Eloise as well, the clock was ticking and drawing her nearer to needing ecmo, her condition was now critical. On the 8th of June Eloise had been listed on the Urgent Heart Transplant list and was at the top of the European list. 

       Late afternoon on the 9th of June 2002 we were called into a side room to talk to Eloise's cardiac surgeon, an organ donor had been found for Eloise. He carefully explained the heart wasn't a match blood group wise but he felt this was Eloise's last and only chance of a transplant. Of course I knew nothing of you or your baby right then Rebecca. I was shocked, scared, grateful, you know all those emotions rolled into one, a massive ball in the pit of my stomach. Then not long after on receiving an increased dose of sedation my baby arrested in intensive care. I willed her to live , I did not want the donor heart to go to waste. I did not want you to hear your daughters heart couldn't be used. I wanted Eloise to live, my fighter survived, she heard me. She was taken into theatre at 22pm, whilst there she suffered a further cardiac arrest. You daughters gift came at just the right time Rebecca. Eloise made it through the transplant and critical post operative period. It was a week later I think that I was told a few details about Zara, knowing her name helped me. I needed to see her as a real baby , knowing her as "just a donor" wasn't enough. That is when I wrote to you for the first time, it was so hard getting that right, I don't think I did , but I know you treasure it. To hear that you keep my letters safe with some of Zara's belongings meant a lot to me. 

                       Your decision to donate Zara's heart saved Eloise,  without you I would be in mourning too. I cannot say thank you enough, it's not enough, it never will be. You say it is, you are comforted knowing Eloise is happy and well . That's all I can give you isn't it, reassurance that we'll never take your gift, Zara's life for granted. We don't forget Zara, maybe it's Zara that looks out for Eloise, we all need a Guardian Angel . I hope you can see in the snippets of our life I share with you via email that Zara's heart came to the right little girl. I love my daughter so much and I'm immensely proud of the wonderful young woman she's growing up to be. I hope you are too, I want you to know her. One day you will both meet and I think you'll fall into each other's arms. Remember our meeting ? Prior to it we both confessed to not being touchy feely people yet we had to embrace and hug each other goodbye. It felt right, we'll always have a bond. Drawn together by tragedy and a miracle of life, Zara and Eloise ❤️

      Right now I'm feeling overwhelmed, I'm thinking of all those treasured milestones I've witnessed and all those memories made over the past 13 years of Eloise's life. I gave Eloise life on the 7th September 2000 and you gave Eloise's life back to me on the 10th June 2002 by being incredibly brave and letting Zara become an organ donor. I guess I'm crying as you don't have what I've got an extra 13 years of memories,  for Zara there was no first day at school, no family holidays , no getting a new pet, no sleepovers, no learning to swim, the list is endless. How I wish neither girl had got sick , no meningitis for Zara and no viral cardiomyopathy for Eloise, I can but dream, I expect you do to ? But the unthinkable happened, we faced every parents nightmare. You saved me from living my nightmares Rebecca. I know Eloise's future is uncertain, there is no guarantee she'll be here for as long as I want her to be but I'll live with that and treasure what I have, I have her here right now and for that I'm grateful.

                        

          You do realise how important you are to me? How I love it when an email pops up from you. I love the fact you never forget when Eloise has an appointment. I love how interested you are in her transplant, her medications, her tests etc. I'm honoured to have you in my life, you were so supportive when Eloise was having her rejection blips. I was so afraid to tell you, not wanting to upset you. But you were so happy I did tell you and you went and "researched " all you could about rejection and treatment etc, educating yourself ! It's the "nurse" that's inbuilt into us I do love a plan ! 

           So Rebecca tomorrow is Zara's day, we shall remember her, light a candle and send up her heart balloon. I shall think of you dear lady as I'm sure your heart will be breaking all over again tomorrow. I'm sending you love by the bucket load. 

                        

                                                  Loads of love  Bec x