Strength

      

"You have to be strong" ever said those words either inside your head or to another ? 

Why do we feel the need to always be strong ? 

What is wrong with releasing our true feelings and emotions ?

 Does breaking down make us less of a person ? 

Is this the English stiff upper lip thing ? 

By being strong are we sacrificing our own mental health to make things easier for others ? 

      Just a ton of questions to which I don't have the answers for. There may not even be an answer or there might be multiple answers. It's all personal , all relevant to you and your situation. 

   I'd never label myself as strong, but a few people I know say I am. I just get through life in the best way I can, to get the best out of it. Things aren't always easy, I have worries and fears but I cannot let them control me and sap my happiness taking the enjoyment out of all the good in my life. Can't be unhappy when you've got 4 lovely children, a potentially beautiful home, lovely family and friends and a plentiful supply of tea and cake ! 

       

                                    

    

   Believe me I'm not strong , I don't feel I'm weak either just average. I just cannot let my feelings gush out all the time I'd probably drown ! That doesn't mean I'm blinkered it just means I'd built a dam to keep everything in . Then a couple of years ago when Eloise was ill the dam burst. I found the right person to talk to, the right support. What I had for so long resisted and avoided had caught up with me. Yet I felt no shame or embarrassment. I felt no anger with myself or disappointment in my supposed weakness. Instead of feeling defeated and vulnerable I felt free, lighter, more positive, it was a wonderful release, after I felt more at peace. So now when the feelings are building up I either have a little chat with someone close or close the bathroom door and write things down in this blog. You're my audience my sounding board, my therapy and it feels good. When things are bad I no longer feel alone or struggling. This blog is a great release.

                      

    

I guess when I was trying to be strong I was denying myself the feelings I needed . I wasn't allowing myself the freedom of being honest, I wasn't admitting that I needed support. I was worried about burdening others with my fears when many of my friends are going through their own hells. I know I'm always banging on about my heart transplant family but I guess it's what happened with Eloise that's given rise to many of my feelings. Actually it's very much ongoing, it's nearly appointment time and the last Gosh echo showed slight changes . First of all I was very worried but I was reassured by her consultants words "very good heart function"  Hoping she remains stable . I'm in self preservation mode at the minute, back to writing, baths, candles, music and hypnosis and I'm doing ok. I know you have to look at the test results and tweak treatments but you also have to look at Eloise and the amazing quality of life she has right now. I'm going to look at my happy smiling girl and be inspired. 

This picture was taken last week when Eloise wanted to know what was the point of lettuce....."it's just a leaf!"

                                    

I suppose too often, we build walls around ourselves in the midst of grief, pain, or challenges. We don't want to appear weak or worry our friends and family. I always want to protect those I love from the full truth if things aren't great. I guess we want to appear as people who don’t need anyone’s help, people who are getting by just fine, people who are strong enough to weather the storm on their own. But now I have opened up to you, you know the truth. I'm only human, and as I said in my last post we all have a breaking point......thank goodness for Elastoplast ! 

     I might have a strong shell but I have a soft middle, see I'm a Minstrel ! Mind you if I'm not alright all that you need to ask me if you're face to face with me is "are you alright?" then the lump in my throat grows and I'll cry ! You've been warned ! 

I'm so lucky to have so many beautiful people in my life ❤️

                                      

Breaking point? I'm only human.

I'm sure how much content this post will actually have or if it's worthy of being written but I'll start and see how things progress. This weekend I felt for an hour or so that I was at breaking point, I'd had enough of being strong since my marriage break up. Thankfully by talking things through some of the despair lifted. I felt like screaming like a toddler and shouting "Fuck You!" Not very lady like I know but sometimes cursing helps ! I guess I just want to share with those of you who think I'm strong, I'm not, not really maybe I just wing it better than some. Ahhh that's where Eloise's and Millie's acting talent comes from ! 

      As many of you know it's nearly 4.5 years since the break up of my marriage, well it's now a year since I consulted a solicitor as instructed by S to represent me and my best interests during our divorce and financial settlement proceedings. Well what an expensive year of going around in circles and jumping through hoops for both me and S. It's just been so bloody frustrating and time consuming. Well this week things nearly came to a head as we were both being pushed by our solicitors. We had both of them threatening mediation and court something we are determined to avoid. I feel they've driven our ideas for our financial agreement further apart, I guess they want to get more money out of us.  

     I appreciate my solicitor is trying to get what's best for me and that S's solicitor is defending this but it's threatening to destroy the relationship we still have. He's not my husband, my partner or even my friend but he's the father of my children and we remain a family. We can talk , laugh and go out with the children together occasionally. I got very upset on Saturday trying to discuss the latest letter from my solicitor and for the first time since the early months I cried in front of S . In fact I felt really odd and faint , S even offered to make me that cure for everything a cup of tea ! Im being honest now I've had enough, I'm at breaking point . The cynic in me will always wonder if that's what S's solicitor wanted , to squeeze the fight out of me. The nicer person buried deeply inside me would dismiss this thought. I don't need this extra stress in my life. I feel I manage my stress quite well and I cope but it would be very lovely to take this weight off my shoulders. 

         

        We need this sorted now, home life needs to move on , I need my financial independence so I can make changes and decisions regarding the up keep of our home etc. I feel all home improvements have been on hold in case I can't afford the work. I want security for myself and the children. S wants that for himself and his partner too. So we'll tie up the lose end, yes there's just the one sticking point.  Quite a big one I guess spousal maintenance , S's solicitor said none so mine got a bit carried away, I've no desire to bleed S dry ! I did explain to S my thoughts on this payment. He'd initially said once Henry was 11 I could work more hours, so no more spousal maintenance payments. Yes perhaps I could but I have to think of Eloise's needs and her health in the future . If I took on more hours and she became unwell again like she did for a year two years ago I'd find it hard to juggle the increased hours and not let my work colleagues down. I managed to stay afloat last time. I feel I'm better doing the hours I do now and adding in an extra bank shift if money's needed. I don't like thinking worse case scenario I cannot allow myself to be pessimistic but occasionally you have to be a realist , I may one day be Eloise's carer. However the optimist in me says she'll care for me ! I think I've given S a fair insight into how life can be . Funnily enough it's not all trips to the Cinema, bowling, crazy golf, boxes of Lego, Hotel stays and TGI Fridays ( well just every other weekend) 

  I started the year optimistic that this would be the year my divorce happened but now it's not so likely unless we get this moving super fast now. 

  

     Tonight we've made our financial settlement plan, it's no real surprise that it's not a lot different from our original thoughts . Copies will be sent to our solicitors , it's time for closure and new chapters to begin. I'm hoping for some relief once this is over. Looking forward.......

Birthday Reflections

  

       

      

Yesterday it was my birthday, I'm not really one to go all out on my own birthday. As a child they were always good, but as an adult less so. Over the last couple of years there have been a couple of bad ones, 2010 S forgot, no cards or gifts, that felt horrible, obviously his mind was with his mistress. Then in 2013 we were at Gosh and Eloise was diagnosed with rejection for the second time. Felt so sick and worried about her, so birthday thoughts and cake were forgotten. 

So here I am another year older but no wiser ! I'm wondering when I'll feel "grown up" ? I look at my life and the responsibilities I have, my four dependant children, my home, my finances and my job etc and think how did I get here, I'm not old enough or adult enough for all of this ! Stupid I know I'm 46 now, creaking ( quite often ) nearer to 50 ! 

       

        The number itself doesn't worry me, it's just that a number, I feel no different today than I did earlier in the week, I didn't suddenly age.....it's just a slow decline. Do you remember waking up on your birthday and looking in the mirror to see what you looked like another year older ? Being excited to see yourself at the ripe old age of 7. I can't say looking into a mirror thrills me these days, post make up not so traumatic, pre foundation scaffold quite horrific . There's something to be said about not putting my contact lenses in too soon, blurred reflection. I have just reached the going ever so slightly long sighted age, thankfully I can sort that out with varied focal contact lenses, phew. I love sunglasses but I'm not keen on glasses preferring the normal surround vision I get from my lenses. 

    I fear I will be one of those old ladies that falls over and breaks her hip, I think I trip up nearly every time I go out. I wonder if I was a child again whether I'd be diagnosed with dyspraxia ? I have always been clumsy. So maybe I should start some kind of calcium supplement ? I'll put that on my to do list, I often scan the bottles of vitamins and minerals in Boots then I walk away empty handed. Too confusing an array ! 

    I don't think I have ever been one of those people with life goals, ie before I'm 25 I want to be engaged, by 27 married, first child before I'm 30 and so forth. So I've no idea where I thought I'd be at right now. I doubt I'd have said divorced, but then if you thought that you'd never bother getting married . Otherwise I guess life is in the right place. I expect I'd have thought I would have achieved more of a nursing carer. It's hard to know whether I gave up on career progression because of what happened to Eloise or if I never had it in me anyway. Perhaps a bit of both. I wonder if I should have chosen a different career pathway, I guess I was shoved into nursing post school work experience. Don't get me wrong I've met some amazing people and there have been plenty of rewarding times but now I'm unsure what to do next. It's when I think I've still got another 20 years to go, can I keep on nursing ? On the other hand I know nothing else I've been nursing since 1989. I have no other skills, some of them will be transferable skills I guess. 

     My life on the whole has been good, I'm sure if I didn't have the worry and the stress of Eloise's transplant I'd fret about something else. We all have worries don't we. Just with health it's pretty much out of your control, especially when there's no cure and treatment causes more issues. After never getting a cold while on azathioprine Eloise has had a few on MMF which is a shame. Like she said though a cold is better then rejection, such a wise child ! She's been off school for two days battling another virus, thankfully she's better now. I try to remain happy but it's a pretty constant worry with Eloise. She's not made my hair go grey yet , well the blonde is covering up the white. 

  How can I worry about getting older when it's something denied to many ? It's a privilege isn't it, every day a bonus. No one knows what's around the corner, if we did we'd probably sit back and give up. When you are confronted by a truly difficult situation head on you fight it, it's in everyone of us the passion to survive. So I'd better get a move on and prepare for battle. Today's battles should just be small ones......anyone want to take Henry shoe shopping ?

      

                                      

The Wait

Waiting - 

                       

   What type of person are you when you're waiting for something to happen ? 

Are you inpatient ? 

Do you remain calm ?

Are you excited ? 

Are you scared ? 

Do you remain positive....hopeful ? 

What if the wait is prolonged with no end time ? It could be days, weeks, years or never as time could run out. 

Could you live like that ? 

This is how it is for those living on the transplant list.  They are in limbo , lives on hold, not just their life but the lives of their close family members too. Not only are they waiting at the same time their health is deteriorating for some the deterioration is slow for others its rapid leading to multi organ failure and they then need hospitalisation and life support. Then the family becomes split. This then makes the wait even more unbearable . Also you know time and options are running out. It's a daily battle to keep the person "well" enough to receive a transplant. 

My family was lucky we were spared the wait as Eloise was transplanted 24 hours after being listed. From diagnosis to transplant was a short sharp three weeks. No time to think too much, to ponder the ifs , whys and maybes. I didn't appreciate then how lucky we were, why would I things were pretty hideous. Now I know we were spared the gut wrenching wait. I know when we were at the Freeman pre transplant they asked if we'd like to meet another family, one with a post transplant child. We declined, deciding we didn't need to learn about something that might not happen for us, an organ might not have been available for Eloise. 

Now I've been a spectator while other families have waited for their loved one to have a transplant. It's hard to find the right words to say sometimes, to give words of encouragement and hope. It's hard watching little ones fight so many battles to survive, children the same age as Eloise was. Seeing them covered in wires knowing only another family can save them by donating their child's organs. No one wants to think of a child dying it's not the right order in life. The wait can have other implications , daily life comes with expenses . People have mortgages, homes that need maintaining, bills to pay, families to feed etc. This just adds to the worry. 

It's not as if a transplant can be scheduled in , it must be hard waiting for a cataract operation or a hip replacement both debilitating but you can be given a date for your procedure. You're not only waiting for someone on the organ donor register to die and their family to say yes. You're waiting for your match. Blood Group, Tissue type, organ size etc all have to match and you need to be top of the urgent list, oh and stable enough to withstand the operation. The odds just seem stacked against you. Thankfully for most of my #transplantfamily the call comes in time, as a group we've been lucky but occasionally luck runs out. Recently we have learnt of Mr P his wife joined our group after he passed away waiting for a transplant call that never came. We also followed baby Willow's story and sadly she too passed without receiving a heart transplant. It makes us realise how lucky we have been , lucky that our loved one received an organ just in time. 

      So thank you to all the amazing donor families who have spared us grief when they were grieving. I hope you all know how much you mean to us. We remember your loved one and live life to the full, looking after the gifted organ. 

                        

    So think about it decide if you or a loved one could survive the agonising wait knowing that 17 million people haven't made their decision about organ donation. Knowing only 31% of people in the UK have signed the organ donor register. Knowing 3 people every day die waiting for an organ, real people not just statistics. I'm sure if someone you loved needed an organ transplant you'd be here campaigning with me, you'd see how desperate it can be . You'd see how frustrating it is that 96% of us agree with organ donation in principle then for whatever reason don't bother to sign up to the register. I just cannot understand why. Dead is just that , why not spare someone else death when your own death is inevitable ? Please help me get more people on the register #onemore person can potentially save 9 lives. I know I've already got 6 people signed up this week so a few more would be great ! 

   Eloise's story could have ended right here 9th June 2002 on a ventilator at The Freeman Hospital in Newcastle. 

       

But her story continues ,13 extra precious years, and each year is another chapter.........

      

Commitment

Commitment - 

       

Yesterday I started to wear a very beautiful ring chosen for me by my boyfriend Warren. It's white gold and diamonds made special as he selected it for me without my knowledge, cunningly taking one of my Pandora rings and getting my ring size from that. 

                     

      

        We're not engaged, it's early days, we have time for that if it's the right path for us as a couple. At the moment we have no engagement leading to marriage plans. No cash either if any of you would like to start a "Go Find Me" page. I can provide the love story and Eloise's story to increase public interest......please note this is my attempt at humour ! 

Why bother with a ring then? For that answer you'll have to ask Warren it was his lovely idea. I didn't need the ring to know how much Warren cares for me, he's always been very open with his feelings where as I'm more of a closed book. I guess by sharing the pictures of us together and the picture of the ring you also know how much he loves me. I struggle more with the showing emotion thing and I don't make so many open declarations but that doesn't mean I don't care.

       

           Between us we have three failed marriages and at the moment two divorces until mine is completed. We have both gone through marriage breakdowns because of adultery. So for us to have trust it's a big, no huge deal, the be all and end all of our relationship. I know we cannot judge a new relationship on past ones but it's hard not to be cautious, to protect yourself you hold back. Yesterday while walking around Bristol we saw three or four Weddings taking place, everyone looked so happy . I hope they have all found their Happliy Ever After.

         We are content with what we have right now. As we have time with just each other as a couple, time with my children being a family , time with our individual friends and hobbies and time alone. A perfect mix that's working well for all of us. So I'm not ready to unbalance all of that . It's hard for a bachelor to fit into the busy, hectic life of a single mother of four but Warren's doing ok. It's not always easy, I'll be honest the kids especially Henry can stress Warren right out. Amazingly he's managed to give up smoking and now vapour as well !  This family conflicts can lead to some tension but I guess that's like any family, blended, step family etc ? We work that though until calm is restored. Warren won't replace the kids dad, he doesn't need to but he can spend quality time with them as well. I think my children and Warren get something out of knowing each other. My children will always come first in my life and Warren after them .I'm entitled to my own happiness as well and I have enough love for them all. 

          If Warren and I stay together it will be a natural progression that he'll move in with us as I have a family home. So therefore we have to get this right for all our sakes. We aren't ready for that. I'm sure though my Ex will be rubbing his hands in glee as if we cohabit it means he can cut back on the maintenance money . So at least one person will be happy for us 😉. 

        

        

   So thank you lovely people for your congratulations it really does mean a lot to both of us and we do appreciate all the support we have. I'm glad you are happy for us, as a sensible friend just posted on my FB "Life's too short to not be happy " 

                   love you all lots. X 

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 !