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.