"I'm fine"

                        

"I'm fine" syndrome. We are all equally as guilty of saying "I'm fine" when it's pretty obvious that we aren't . Someone asks us if we are ok we're clearly not but we bottle it and give the stock "I'm fine" answer.  Why do we go to such lengths to hide our feelings ? I guess we retreat into ourselves as we fear opening up will make things worse. I know if I don't hold it together sometimes when asked if I'm ok I'll cry, the flood gates will open and I'll be a blubbering mess. You can also guarantee this will be in public ! A lot of us deny our true feelings from coming to the surface because we are protecting our friends and loved ones from our emotional pain. I know I used to shut down a lot , isolate myself, go quiet just self preservation mode really. Now I've learnt it's good to share and this blog has given me the security to be open and honest with you. Is it because we don't want to look vulnerable ? Vulnerability isn't weakness.

    Emotional pain really hurts, you can feel worthless or unworthy for feeling it, it makes you feel rejected, not listened too or even invisible. You can feel embarrassed and guilty for feeling such emotion then you often feel weak too. Why do we have this fixation with being strong? Where does it get us ? We build ourselves up to fail. I think we hide our emotional fragility from others because letting them see it exposes us. I think we fear they'll see us as weak and that we will lose their respect. I think we also fear being labelled too sensitive, that if we do express our true feelings others will belittle them and we will feel worse for not coping. Why do we fear showing how we truly feel? Why can't we show a vulnerable side? It's not pathetic to lose control of your emotions yet many of us feel it is. 

      

   

    I think I can say a lot of us put the feelings of others before our own. We protect them from as much as we can. Afraid that if we open up we may hurt them, so we become unwilling to take the chance. I felt like this, until it all got too much I couldn't live up to others expectations of me. I felt like a fraud , I was masked basically. The turning point came 4.5 years ago when Eloise had her reaction episodes, I just couldn't hide anymore . Outwardly I needed to appear strong for her but I needed an outlet for my feelings before they lost control and drowned me. Hence the writing started, this is my safety net. Emotionally I've come a long way, I'm mainly at peace, I'm definitely honest with you all and I'm free.

      

      It's ok to not be ok. We should release our emotional pain. Having feelings isn't abnormal, you aren't useless or foolish. I think we fear the responses of others if we open up, we don't trust them so we think we are safe guarding ourselves by saying nothing. What if we are all sat there saying nothing ? I just think go for it, explain how you are feeling to your loved ones, I think you'll be surprised how many others hide their true selfs too. No one can make you feel worse than you already do suffering in silence. We do need to stop our British "stiff upper lip" mentality. We are a stoical nation, sadly we put a lot on being strong but to me disclosing our vulnerability is a very courageous thing to do.

   If we want others to understand our emotional pain we need to express ourselves verbally. I do understand that not everyone is at the same level of sensitivity so you have to choose who you open up to initially. But I think if people become aware of our true feelings they will learn to adjust their responses . People need to learn empathy and support each other in life not bring someone crashing down. I think once you develop confidence you can find a safe way of expressing your emotional pain. Having feelings is an essential part of who we are, we need to let them out, all our feelings are valid despite how others may respond. Let's face it having sensitivity and feelings is what makes us humans.

                    

So goodbye 2017 you've been good to me and my family but 2018 I'm ready for you and the fresh hope that you bring. I hope 2018 is the turning point for many of you as I know a lot of my friends have had a difficult year. Let's continue to support each other just "Have Courage and be Kind."  Lots of love Bec xxx

     

Riches

Being Rich

                                    

Rich, I'll confess to having a bit of a blip at the start of the month and initially my thoughts were money focused . I was a little bit angry and quite upset about the lack of financial support my first born gets from her dad. Especially as he's just had a very extravagant wedding and has some long haul honeymoon plans. Obviously it's his money and he can choose how to spend it but it would be nice if he helped Leah out. As she's now 20 there hasn't been any maintenance for her for two years from him. She'll always remain my child and I'll help her as much as I can, it didn't stop when she became an "adult." I don't like feeling angry and unsettled so I'm very glad these frustrations were short lived and the anger dissipated safely in the gym ! 

I managed my thoughts by changing them from thinking of what I didn't have to being grateful for all I do. I have so much that money can never buy. My family, the people who will always love me, they'll stand by my side no matter what the circumstances are. My parents did a good job of raising me and I'm lucky to have had a good solid childhood. My four children keep me young, they transform me back to being a child again. Though there is some doubt over whether I ever truly grew up. How rich am I ? Children are so precious and to have four of them is a privilege .

                       

I have a small tight group of friends in reality, on FB I have many more ! My true friends are a select bunch, special chosen as they have the right qualities. I value them, they are always there for me. I like to be there for my friends too, kindness goes a long way. It's good to empower people you meet, showing them you care. Some of my friends I rarely see but we stay in contact and I know when we do meet up it'll be like we've never been apart. One of my friends I never see but we are in touch constantly and I'm grateful for the level of contact and understanding we have between us. How rich am I ? To have friends who totally understand you and accept you for who/what you are is precious. 

     I am content and happy with my life. I think true happiness comes from being grateful for what you have. Not being content with what you have leads to misery or greed. This goes for material things, lets face it even if you get "everything you ever dreamed of" it doesn't equate to happiness, because as humans we have a deeper need than to just have material things. For me I also think of Eloise's illness and transplant. I could destroy our happiness by constantly worrying about her future. I could get angry about the whole situation but it gets me nowhere.I can't live in the past as I'll lose out on living.  I have to remember how lucky I am that Eloise received a heart transplant. Others die waiting. I have to look back at the past 15 post transplant years and look at all the wonderful memories we have banked as a family. We have collected so many lifetime experiences while we can. So we do not have regrets when we are no longer able to. I think having a positive attitude towards life is key. I'm optimistic that being positive in the toughest of situations will bring happiness back to me, even if I have to be really patient, I guess this is hope. How rich am I ? There is no gift more precious than the gift of life. Life is a gift that cannot be bought so we must treasure it.

                               

   Work, if you'd told me this time last year that I'd be leaving my job at Bristol Childrens hospital in six months I'd never have believed you. Previously when things have been tough getting the hours I needed to fit around solo parenting four children I'd considered leaving nursing. However nursing isn't a job it's a passion , it's in your blood and I know nothing else. Nearly 29 years in the NHS cannot just be switched off. So here I am working at the dental hospital looking after children still but mainly in recovery. I have my career back, the one I chose all those years ago. I have passion again not pressure, I'm looking after children and not drowning in paperwork etc. I consider myself very fortunate to be continuing in nursing. I have met lots of people who are frustrated with their careers and life as they don't  know where there desires lie. How rich am I ? 

My life is valuable, I am rich and I appreciate all I have. Of course having money helps but essentially the amount of money doesn't bring greater happiness. I'm lucky to have enough to live well. I appreciate others aren't so fortunate. I like to have fun and to keep smiling, I like to add sparkle to the mediocre. You know me, I choose to be happy in my heart and my mind and I like to keep an optimistic view on life. Money cannot buy that. Maybe life should be measured by the level of satisfaction instead of the level of possessions ? How rich am I ? Thankfully most of the time I've hit the jackpot but of course I'm only human and I'll have the odd jealous tinge occasionally but I can soon remember all I have that cannot be bought.

      

    

Thankful - but transplantation isn’t a cure ❤️

                                       

        

A little reflection, plus it's time for me to talk transplantation......again. After reading a few posts from friends in our transplant family and my latest attendance run in with Eloise's college I thought I'd write a few words. I  know that all my friends who have either received a transplant themselves or who have a transplanted child are thankful. We know we are lucky and blessed because of organ donation. We know that others aren't so lucky and they die waiting, we know because we have lost friends from our community. It's our reality. 

         The thing is transplantation isn't a cure and if you say we should be thankful when things are bloody tough mentally or physically for us or our loved one its not always helpful ! We are thankful, we are grateful but let us vent, let us rage, let us say what life can truly be like after a heart transplant. For the most part Eloise's journey has been smooth, one rough year out of 15 gives her a good percentage of "normal" life. I just wish we could forget about it. However this isn't the scenario for all our transplanted friends, some of them have complication, after complication and are constantly hospitalised others aren't the person they were before the transplant mentally. The mental health side of things affects the carers too.

Of course before I was thrust into the world of transplantation I was pretty uneducated in it even though I'd been a nurse for 10+ years at that point. So I think the easiest way to explain things is you change one terminal illness for another. So in Eloise's case she was in heart failure following a rare complication of hand, foot and mouth disease. Having a heart transplant saved her and has bought her extra time but no guarantees . Transplantation comes with so many what ifs , so many complications, medications that have side effects, side effects that need medicines. An immune system that is suppressed to stop the transplanted organ rejected. An immune system that cannot always fight off a common infection leading to hospitalisation, prolonged treatment and sadly sometimes even death. It's such a fine balancing act and simple parts of growing up can tip the balance as we found out to a cost when Eloise hit puberty. Her doses and types of anti rejection medication were no longer enough to stop rejection. 

    I guess we get through all of this because we have to, this is our reality. We can't change what's happened and maybe it's a good thing that we don't know what's ahead. I used to wish so hard that none of this nightmare had ever happened, I'd have traded almost anything to have Eloise whole again. Sadly, however much begging I'd do somethings cannot be changed, so no point in dwelling on it. This is why we live life in the moment and one moment at a time. I want Eloise to have a full life and so far because of transplantation that's happening so for that I am truly thankful. We don't really have any other choice, I just want Eloise to be the best she can be.

                       

   Of course my hopes and dreams stay with me, add in my optimism and Eloise will continue to live a wonderful life. Those transplant records and statistics will be reached and years added on. I will always be in debt to Zara's family, when there was only one option available to keep Eloise alive their bravery allowed that to happen. Organ donation is an amazing thing. So that's another reason to be thankful. 

    The transplant journey isn't easy, it involves decisions no one should ever have to make. It's so awful knowing your dying child (loved one or even you yourself) is lying their waiting for the right person to die, for an organ match and ultimately for a brave family to make that decision to donate organs. It's hideous and messes with your head, you feel like the grim reaper, you're desperate and clinging onto hope. I hoped Eloise's own heart would recover, with medication, time and mechanical support. I wanted her to keep her own heart but time ran out, medication and science could no longer sustain her fragile body.

    It's now the Winter, so let's see how Eloise's immune suppressed body copes this year, she's only just received the flu vaccine and has already had five days off this term with a cough. Hence the bloody stupid attendance letter ! That has been dealt with and multiple apologies have been received but really that's not the point ! So please be mindful if you are unwell please keep your germs to yourself if you have a transplanted friend. Plus don't be offended or moan when we turn you away or cancel plans. Germs that do little to you could ultimately kill someone who is immune suppressed. They may need to be hospitalised and other organs maybe affected. So an illness that's an inconvenience to you could wipe a transplanted person out. 

   Long term complications , none of those lead to you being thankful either ! They can happen at any time sadly. The medications used to save a transplanted person and keep them alive have side effects that have a knock on effect with other organs etc. The anti rejection drugs are harsh on the kidneys leading to kidney damage which can progress to kidney failure which requires a transplant ultimately and dialysis in the interim. The drugs can also cause cancer. Basically it's fine tuning and it's a continuous thing which requires a battery of regular blood tests, echo's, ecg's and other more invasive investigations . It's just never ending and the fear of the Drs finding problems never goes away. Maybe it even intensifies the more years you are post transplant as it's a known fact that transplanted hearts develop coronary artery disease.

      Initially I was very reluctant to even consider heart transplantation for Eloise, then she fought hard to stay alive during her transfer to the freeman by plane that I had to give her a chance. I continued to wonder if I'd done the right thing for some time, maybe years if I'm honest with you. But now I know I so did the right thing for Eloise. I'm just a mother desperate to give her the best life possible regardless of survival times. Being in the transplant world has changed me and my outlook on life, for the better I think. Saying yes to Eloise having a heart transplant will always be the biggest decision I ever make in life. Now though I can talk things through with her and know I did the right thing which eases my conscience and lifts my soul. If we ever have to consider re-transplantation the decision will be entirely Eloise's and I'll support her all the way.

  

     So here we are facing a future of uncertainty for Eloise with medical dilemmas and health issues but a future that wouldn't be happening without organ donation. So I'm thankful that having a heart transplant was an option for Eloise. I'm thankful for the wonderful care she continues to receive from the NHS . I'm eternally thankful to her wonderful donor family without them......well without the gift of life I know for certain Eloise would have died a few days later. They've given me time, 15 precious extra years of it. I'm watching my toddler grow up into a strong woman. She's a very special person and I'm proud to be her mummy. Time is so precious, don't waste it by being negative and wishing time away. Live in the moment and enjoy all the little things. Eloise's transplant taught me that. None of us know when our time will be up anyway , it's in the future, so today just enjoy and keep breathing xxxx

                                   

                                     

    

   

Colour My World

How do you view me ? How do I view you ? 

                        

      

I'd like to think I'm a positive person, someone who can look on the bright side of things in almost all situations that life throws at me. Let's be honest she's thrown a lot at me over the years ! Bitch !!!!! I try to do my best as a human but stuff still goes wrong and things out of my control happen. It's just life. I think it's how you deal with whatever life throws at you is what matters , it's definitely what has ultimately changed me and helped me cope. If that's actually what I'm doing ?! 

                 There is always the temptation to see things in black and white and therefore assume the worst and to miss out on the positive things. It's easy to forget the good things as the mind fixates on the bad. This is what it would be like in my head if I let it, but I decided that I can't live like that. I can't live under a black rain cloud so I search for rainbows. If I'm really happy I sprinkle life with glitter and sparkle too ! Black doesn't really suit me and I'm too clumsy to wear white. I love colour and ultimately I like printed dresses and shirts. I love my bright clothes , whether they suit me is another matter. The fact I don't actually care is priceless. Reaching the age when you are comfortable being you is such a blessing. Who makes the clothing rules anyway ? 

                                      

      

                  I'm normal I do have anxieties and sometimes I feel they're drowning me but I have to surface from them and see what's around me. I think as I've coped so far with a few life changing events including the big one Eloise needing a heart transplant and the subsequent health challenges that brings , other things are more manageable even when going wrong. I know I'm lucky mentally to have not gone through any episodes of depression and even my sadness is manageable and short lived. I don't think my life gives me too much time to dwell or overthink. I like a busy schedule, I love plans and if all else fails I go to the gym. My days are never long in fact I could do with an extension.  Sadly though trying to grab that extra hour of time in the evening seems to lead to me having a very over active brain which in turn triggers my insomnia. I totally appreciate that financially I can afford my gym membership , cake habit and the plans that involve, meals out, theatre trips, cinema, NT and holidays. So I can add so much loveliness into my life, so much to enjoy around each corner. I'm now off work until Monday and I'm looking forward to spending lots of time with three out of four of my beautiful children. My mum is also coming to stay which is always wonderful, I'm sure we will shop and drink lots of tea. Plus I have a fabulous group of lovely , gorgeous, frock loving girlfriends to get dressed up with......this also usually involves shopping and eating ! 

     Sometimes I wonder how you view me ?  A happy, clappy smiling person, sickly sweet , oozing positivity but without a grasp of any reality ?

 Happy ✔️ what's the point in being miserable ?

 positive ✔️ the alternative isn't helpful and it's defeatist 

Sweet ✔️ because I eat so much sugar ! 

Realist ✔️ hell yes, life is short and precious and can be snatched away in a heart beat, I know because in my world it happens. 

Optimist ✔️ because without hope what is there ? 

I could spend every moment worrying about Eloise but I'd miss out on so much living and being a family. So as I've said before I reign my brain in and only look a short time ahead. Live for the moment and bank memories, posting far too many photographs along the way. No apologies ! I have to get things in perspective , I find by writing things down especially my worries it helps me analyse them. Sometimes we take life too seriously, actually I don't think I'm guilty of that . I'm often left wondering how I'm managing to parent four children when I don't feel like a grown up !  No answers needed......winging it is my speciality ! 

   I think I've had to accept there are things in life that I cannot change and I've had to let them go. Except moaning about the miserable weather.....I think that's a very British pastime though. I shall try and remember that no matter what, the sun is always shining above the clouds. Of course I moaned about it today......

Will try harder tomorrow

Will try harder tomorrow 

Will try harder tomorrow

Will try harder tomorrow       (Hush now tomorrow never comes )

      The way I cope with my difficulties, grief, mental exhaustion etc works for me. My in house care package for mental survival which includes the gym, candle light, music, cake, tea, bubble baths, solitude etc can recharge me. However I have to realise it's not my job to "fix" people. We are all different and maybe they don't want to be "fixed" Also I need to conserve energy for the little differences I can make to someone's day rather than trying to provide all the answers. If I can brighten part of a person's day I will as I can remember the early days after Eloise's  transplant I was isolated and sat alone in the dark as no one knew what to say to me. If all I can do is look someone in the eye and smile I will and also a hug goes a long way too. 

                                 

Staying Positive, Being Happy and Living.

   

       

To me being happy is a sign of success in life. I know I'm a positive and naturally optimistic person but I'm not sure I've always been. I think a few things that have happened to me and those that I love have ultimately changed my mindset. We all get caught up in the daily routine of life, we become worn out, overworked, bogged down and stressed. This can give us a negative outlook on life, but I find being a negative person sucks the joy out of living and this can also touch the lives of those around us. 

    As you know there have been some events in my life that could have broken me for ever. Take Eloise's transplant for example, I could have wasted the last 15 years being incredibly sorry, angry , upset, depressed etc. Off course these emotions filter past at intervals but I don't allow them to stay too long. I've chosen to react positively and I now enjoy every single day. What you see on social media is my life and it's bloody fantastic. Of course I still feel pain, I'm not numb and finding out yesterday that my transplant world had lost Andrew hit me hard. I cried and cried, a trip to the gym was no longer an option and it was replaced with a candle lit bath and time to reflect and compose. Tears continue to threaten this morning but I'll get up and put my lipstick on ready for this new day. Andrew would want us all to continue enjoying every extra day of life we are given. 

  I'll continue to try to see things and people in a positive light. It's not always an easy thing to do, it's hard turning negative emotions into positive ones sometimes. I think it's worth the effort to change your mindset though. 

One of the things I do is live in a "happy bubble" possibly called ignorance ! I've chosen to cut out as much negativity as I can so I can deal with my day to day life. I often take a break from listening to the news, if I'm finding it too much. I can't watch aggressive or violent programmes, even to the point I can't tolerate idiots arguing on The Apprentice. I have a low tolerance to noise so all the arguing on reality shows etc puts me on edge. I choose to turn off the TV, not read magazines, close down FaceBook during tedious arguments etc. As these things can effect my positive outlook. This is the same with friends, colleagues and acquaintances, sometimes I have to create a distance for a short time. As I find it hard when people are bringing each other down, I like to build them up. To be able to stay positive it is essential I have influences in my life that support me and lift me up instead of dragging me down. I think what you send out matters a lot. What you give others and how you treat them is what you'll get back (usually) so I like to spread positivity......sorry if it makes you nauseated ! 

Exercise has done a lot for my emotional health and happiness more so than my physical health but that's slow work in progress and I'm happier on the whole with my appearance. Body confidence is the key and that's a mindset I'm trying to get myself into. A good nights sleep also helps, in fact when I'm sad like last night I tend to go to sleep really early. I have to hide away as I've had enough for that day. When I have a lot of thoughts or I'm feeling pessimistic sleep or exercise have a big positive impact on how I feel. I always put my lipstick on in the morning ready to smile. Smiling is so important to me. A genuine smile reaches my eyes and it's a good thing. When I smile at someone I like to think I made them feel happier even if it's temporary., if they smile back that makes me happy. Just something so quick and simple to do.

   It's not always easy maintaining a positive outlook as life throws some horrendous things at you but I know remaining positive during tough times has been more constructive for me. My positive attitude has given me strength to keep going. I work hard and hope for better days when I'm going through a tough period in my life. Of course I don't force optimistic thinking on myself while I'm in emotional turmoil or shocked. I just give myself space and time to process my thoughts and feelings first.

I try to start my day in a positive way, lucky Instagram followers who eagerly await my #goodmorningpost  (joke) I think it just sets me up for the rest of my day. I always start the day with a few tunes picked for the day from Spotify, loving my time capsule of 90's music right now. As a result of having a potentially life limited child I live very much in the present moment it's easier that way. I can stay positive for a day at a time, looking too far ahead makes me scared and my worries increase. I find it easier to connect with the moment and give it my full attention, that's why the little things in life are so important to me.

  Just because I'm positive and often found in my happy bubble doesn't mean that I've lost touch with reality. I don't avoid dealing with the negative events in my life I just don't let them take over my mind or day to day living. I just choose to focus on the positive aspects in order to keep going. If I dwell too much on the past I will miss out on better days. As one of my transplant family said yesterday " Make Every Day Count" 

                             

      As Mary Poppins would say or sing "A Spoonful of Sugar helps the Medicine go down. In a most delightful way." 

To Andrew a true gent who helped me believe that I'm doing ok in life and gave me hope for Eloise's future. Fly high Sir. I will try to carry on being "practically perfect."

       

  

Taking a back seat - Organ Donation Week 2017

Organ Donation is not just a week in September

Today organ donation week starts in the UK , it moved from July to September a couple of years ago. I think that's when my enthusiasm for this week declined to where I am now not wanting to get involved. I feel guilty of course I do and I feel selfish mainly because I am. This will be the 15th or 16th National Transplant Week since Eloise's heart transplant and I don't feel ready to prepare any information to share online. 

  This week my Facebook is going to be saturated with the obligatory back to school photograph against a white door and I therefore feel that organ donation promotion will get lost in this ocean of a new school year beginning. Everyone is quite rightly busy with what is important to them. In this house I have Eloise starting 6th form and Leah going to uni, very important growing up milestones. I want to focus my attention on my family. I don't want to flood social media with endless posts, we are all different and what's important to me may not be relevant to you and that's ok. We just scroll on. When National Transplant Week now called Organ Donation Week was in July it fitted into the calendar better in my opinion as it was near the British Transplant Games. This sporting event is a massive celebration of post transplant achievements. I think organ donation awareness should start at school especially from year 7 onwards. With this week being in September schools will be too busy this week settling everyone in and getting them used to their new schedules. Obviously this year there maybe a media frenzy so organ donation gets the air time and newspaper coverage it deserves but the last two years have passed with little publicity in my opinion.

     Of course I may change my mind as the week goes by I don't know. I used to enjoy this week when it was in July and share so much on my Heart Transplant Community Page. Real life stories of lives changed by organ donation, photos of heart transplant survivors. I used to tweet them too, but my Twitter account is very neglected. Life gets in the way and I'm glad it does . This is normal, all I've craved for Eloise is a normal childhood . During this week she'll start her A'levels and at least one of her subjects will be at another secondary school. She'll also turn 17 !!!! I know an amazing age one I never thought she'd reach. I'm truly blessed. Before I wrote this blog post I emailed Rebecca, the mum of Zara's donor to explain to her how I was feeling. She was the person I chose to be honest with. I don't feel good about feeling this way but I wanted you to know my reasoning.

    Organ donation is always on my radar, it's a huge part of my life every single day. I think of Zara and Rebecca so very often and I'll never forget that but selfishly I don't want to be swamped continuously by transplant issues and transplant life. I don't want to miss the ordinary . I'm not wanting to ignore the difficult side of post transplant life I just don't want to dwell on it. I'm still here for my transplant family, I hope you know that but this year my efforts will be minimalist ! Maybe it's just someone else's turn ? The last couple of years have been a turning point for me mentally and I've dealt with quite a few demons. Dates that used to upset me greatly are dealt with without tears. I recognise these important dates and the impact they've had on Eloise's life but I appreciate the extra days she's been given. 

      I don't know what the answer is for organ donation in the UK, will the government adopt the Opt Out system ? I don't think so, not at the moment. Is it the answer to the shortage of organs , quite possibly if you look at figures from Wales. Even if we had this system in place it's only for over 18's parents still have to "gift" their child's organs.  It's nice to know Rebecca thought of organ donation and wanted Zara's life to have meaning.

    I hope you understand , if you don't please feel free to delete me. I'm like a spoilt toddler having a tantrum, no I'm like a kid that doesn't want to share ! That's just it I've shared and possibly over shared for 15 years , I'm having a chill. I do want those waiting for a transplant to be as lucky as we've been of course I do. I just need to find a happy medium for promoting organ donation and juggling family life so I don't get engulfed. 

   I'll leave you with my organ donation happy ending Eloise 

Eloise 17 on the 7th September 2017 , 15 extra healthy and happy years because a family said yes to organ donation. Starting 6th form college to study two ICT A'levels and Geography. 

                                      

A Taste of "Normal"

A taste of "Normal"

       

    

This week like many other 16 year olds across the country Eloise collected her GCSE results. Unlike many other mothers I wasn't worried or anxious and I slept well. I was excited that she'd achieved another milestone that had once seemed very unlikely. Of course I'm proud that she achieved eight GCSE passes but those pieces of paper do not show the World who my child is and they won't define or stunt her potential. She's doing this life business in her own way and her track record of coping, over coming and achieving is inspiring. 

       I have to be honest it took many, many, many years to come to terms with what happened to Eloise and how potentially fragile her life is . But the situation we found ourselves in wasn't going away it had to be in some way accepted. It had to become our version of normal. I prepared myself for the worse years ago, it's part of my crazy coping mechanism , it's how I deal with the future. When you're faced with something like your child needing a heart transplant it's ok to feel numb, it's ok to feel anger, disbelief, to be in denial and even feel a sense of injustice. Why my child ? This isn't fair, no it fucking isn't and it never will be but you can't lie around waiting for life to go back to how it was. It won't, it'll never be the same. I've had to recognise that life will never be the same but it doesn't need to be awful. I can't change what happened to Eloise , I've had to accept that to free myself to deal with the post transplant and general life challenges. 

    Sometimes life has to change and now I try to embrace those changes. It means an easier life for me . Going with the flow and creating a new normal. I'm a changed person anyway like I've said before. I don't feel I've lost my identity just reconnected with my old one from when I was young and had less fears.

            I often feel fleetingly sad about the past, sometimes haunted and I am scared for the future. I also said just today to a friend " I'm tired of being fucking strong." I think it's ok for me to sometimes feel sorry for myself but then I look at my children and I bounce back. I'm sure I annoy many people with my happy quotes and my generally upbeat persona. Yep all, sparkles and shine, you know unicorns and all that ! But I find being grateful snaps me out of fear and self pity. You can find good in nearly every situation, even if it's tiny. Eloise having a transplant has also brought some amazing people into my life, some of the best friends . I'd never have met these guys otherwise.  They will be there to celebrate the good times and drag me through the tough times. The most awful days of my life have taught me how to live the rest of my days. Life and each day is a gift. I've adapted, evolved and grown mentally . I never thought it would happen and I'd say it's taken 13 years but I do feel different now.

    Keeping Eloise well is essential but making sure we are all happy is also a priority.  It's that trendy word time "mindfulness" I do think it's the key along with positivity, optimism and hope. Please don't feel you have to go through such a traumatic and life threatening situation to remind yourself to live a happier life. I'm here to remind you ! I want you all to truly live and understand what's important. This is turning into a lecture, so I apologise but it's merely a collection of thoughts cascading from my head ! 

                           

Optimistically Cautious or Cautiously Optimistic ?

Optimistically Cautious or Cautiously Optimistic ? 

                   

Optimistic and cautious can you even use those two words together ? Life is going well at the minute but I always feels this needs to be whispered in case Eloise's health or something else puts a spanner in the works and it takes a huge nose dive towards difficult. I find it hard to stay in the moment but I know life is now and it needs to be lived and enjoyed. In general I'm an optimistic person I guess if things get difficult I've got all my proven techniques to get me back on track mentally. I don't think it hurts to approach certain aspects of life with caution, dipping your toe in rather than diving straight in. I like a controlled life, it's easier for me. Should I take more risks ? Maybe but I've got four children in my care. 

A few Facebook insights into the lives of others puts me back on track of living each day as it comes. Life truly is fragile and everything can change so suddenly and without warning. Instagram is a happier and more hopeful social media platform but is it sugar coated and not what it appears ? I don't know, I have a sweet tooth so it pleases me seeing fluffiness, sunshine and the odd animal snap too ! I like being happy , smiling and laughing and I like everyone in my life to be happy too. I hope I can bring a smile to you when you need one my friends. 

     This holiday has been wonderful, I've relaxed, I've swam, I've eaten too much and I've read 11 books. I've not completed my daily Fitbit steps, this pained me initially but what the heck it's two weeks, I've another 50 weeks to walk in ! I've spent quality time with my children when they've not been lured away by the wifi and Nickelodeon ! It's their holiday too so I don't mind, too much sun and fair skin doesn't mix that well. The suitcases are now packed and tonight we will say goodbye to this wonderful country. If you've not tried Turkey as a holiday destination I recommend it. Such wonderful warm hearted people, I'll miss our friends. Especially in the knowledge that it'll be a few years before we come back as I have already plans for our next adventures. 

                      

     Adventures that's what life needs. I like plans and I like having things to look forward to. I'm looking forward to going to work on Thursday......a break from the laundry ! No seriously I can't wait to see my ladies and catch up with them. Hoping to have a cake dates on Thursday evening and Friday,  maybe cider too. This Summer holiday has had to have military planning. I think every colour has been used on my calendar. The children are coming and going all over the place and add in work, I've had to be super organised. Which if you know me well you know I love it. Trips to festivals for Leah, Eloise a week in Scotland, Henry a week with his dad, Leah, Amelia and Henry a week in Spain, Eloise a madness concert.....the list goes on right into September. September will bring another huge change as Leah's off to University at Manchester Met. It'll be strange not having her around, just got to work out how the hell I'm going to get her and all her belongings up there. Any volunteers ????? I'm looking forward to bring reunited with gym, he's got a lot of restoration work to do......sorry I needed dessert ! I'm looking forward to going as an escape and some headspace, I need daytime TV , I need Homes Under the Hammer and a few tunes on Spotify. I think my Cath Kidston mug collection is calling me, looking forward to a pot of earl grey. Small pleasures that's what life needs. 

   I do want to bring the Sun home with me, initially to dry the washing mountain but I do love sitting in my deckchair drinking cider and reading. Hoping the weather is kind enough to allow me a NT adventure at the weekend, I want a weekend of Englishness ! Cream tea and manor houses plus a floral frock. 

    So another ending but I'm happy as there are many more good times over the horizon. Family time and quality time with my wonderful friends. Get your social schedules ready as we have plans to make my friends. So looking forward to seeing you all and a couple of new Lindybop frocks need to be taken out ! I know I'm bloody lucky with the life I have now but it's the struggles and heart ache I've gone through and the shadow of Eloise's health that has made me live each day with as much positivity and a sprinkle of sparkle. I'll never let anyone dull my sparkle again. Love to you all. X 

                            

                V v v.        

    

Happiness is the Key.

Happiness — in search of happiness, as happiness is a choice right ? It can be hard to achieve and maintain the happy bubble. Happiness is elusive, so that's why I've had learn to understand myself and my needs. I guess many of us spend most of our adult lives chasing happiness like it’s some sort of distant destination that we will arrive at one day. Not seeing and appreciating what we already have, it's all about the little things people ! Yep I'm one of the enlightened.

         Life can be so all consuming, complicated and grown up. Even at the grand age of 47 I'm not ready for grown up, you can't make me !  I've had to take a step back and look at my life from another angle. Then I saw honestly how things were and I made some changes.  You can’t let fear and negativity hold you back and keep you trapped in a life you’re not happy with. Therefore I was forced to think again about what my real goal in life is and how I could make a firm foundation for it. Basically if stripped right back I just want an easy life filled with happiness and health surrounded by awesome human beings of my choosing. 

      

We live in this busy, tough world that teaches us that to be happy we must first achieve the status of “enough;” rich enough, clever enough, funny enough, fit enough, popular enough, worthy enough but “enough” is generally a far-fetched and unobtainable. Happiness is easier to achieve and better than "enough." Of course being happy can still need a little work.

     I'm often afraid to openly say I'm happy incase I jinx my life and my run of good luck. Eloise's stable health but I should share my happiness with those who are interested. I shouldn't be afraid, we are all vulnerable but we must speak up and share. No one escapes fear, no one is without self doubt, no one is without insecurities , you aren't alone. It's just how we choose to deal with these things and other such delights ! You cannot let your past and the bad things that have ever happened to you, weigh you down. Everyone has had some bad times , some worse than others, but you’ve got to walk through life like you haven’t got any. On the whole life is good to me, I am financially pretty secure, I own my own home, I have great kids, amazing hand picked friends, my health, the right job for me but I still have to work on my happiness . I believe we all do. I think we rely on others to make us happy, I know that's a mistake I used to make. Now I'm one of the enlightened I know I'm choosing happy and I'm the only one who can make it work .

     It's taken me a long time to get to where I am now, it's where I'm supposed to be. I don't regret the "lost years." I'm just more honest now with myself and by writing things down those around me get a better insight too. My life is more real now, more authentic. I believe anything is possible if you set your mind to it, it just takes time........sadly this means I won't be a slim thing on holiday again this year as some things take a hell of a lot of time !!!!  

       So here goes the summary, I'm basically trying to say that life and your happiness is exactly as you make it and it's absolutely ok to walk away from the things and people who are dragging you down and not letting you reach your full potential in life. You are the only person who can control how happy you feel and who can carve yourself a sparklier HOW IS THIS EVEN MY LIFE ! Go chase those dreams people. Go, go on what's stopping you people? Go get the World , it's yours.......well it's mine actually ! 

I'll leave you with the quote that got my writing cogs moving this evening.

                         

 

15 Precious Years ❤️

15 Precious Years ❤️

                        

Here we are 10/06/2017 , 15 years since Eloise's heart transplant was performed at The Freeman Hospital in Newcastle. It seems crazy that she needed a transplant because of a toddler illness, just a virus. This 15 year milestone has never been promised so it's a wonderful day to celebrate . I shall reflect on every extra year of good post transplant health Eloise has been gifted. Then dream of all those years waiting to be filled with adventures by my warrior maiden. 

     Every time I meet someone new and they hear Eloise's story it comes as a shock to them that her heart transplant may not last. Most people think it will last an average life time but sadly that's not the case. Thankfully we do know people who are thirty years plus post transplant so they give us hope and something to aim for. Maybe a Guinness World Record ? All I can hope for is an extra day with my precious girl, that leads into an extra week, an extra month, extra year, extra decade . So that the days keep coming and we keep making memories. 

      Having a potentially life limited child changes your outlook on life. You understand what's worth fighting for and what to let go. You make the most of every day even if it's sometimes difficult to find something good in a day you can if you look hard enough. The little things are so important. Having a happy and healthy child is everything, I have that four times over so I'm very blessed. I just have to work harder to keep one of them healthy but it's bloody worth it. Even when she's glaring at me when I make her move from her computer chair ! 

      This past School year has seen Eloise turn 16 and leave Secondary school ! This is so amazing, I remember being so scared that she'd never start school. I then feared her dying whilst at Primary School. This moved onto wondering if her chosen Secondary school was suitable for a wheelchair etc. This led to discussions with her new head teacher about her medical needs and the only reassurance I got from him was an ambulance could get to the school quickly.....hmmmmmm ! So another education chapter is ending, Eloise only has a handful of GCSE exams to do now and a prom to attend. Then a Summer of freedom before hopefully starting Six Form in September at the grand old age of 17 to do A'levels. Then there's even been a bit of thinking of the future, there's a Foundation Course Eloise would like to do, then possibly a degree. To have a future when 15 years ago you lay dying is nothing short of a miracle.

      Just a virus, a virus that changed the direction of our lives forever. Nearly taking away Eloise's life and changing our outlook completely. Although Eloise is a myocarditis survivor her heart wasn't and without a heart transplant she'd have died 15 years ago. I feel so much anger towards that coxsachie b virus, just why did Eloise have to have the rare complication of hand, foot and mouth? But time has shown me that there isn't an answer and the if's, why's, maybe's will never go away but I can't let them destroy me. Acceptance is hard but I do see the occasional glimmer of it. Other than popping pills and the hospital appointments Eloise has to attend we can forget about transplantation quite a lot. We have every reason to smile, especially as some of our transplant friends aren't as lucky as Eloise but they still live for the moment and keep smiling. If they can do that I have no excuse !  

                        Of course without Eloise's courageous donor family none of these years would have been lived and loved. Without them I'd be lost . Rebecca, Zara's mummy is one amazing lady, our emails have been bouncing back and forth all week. It's a difficult and bitter sweet time for me but for her it's the anniversary of Zara's death. Yet she thought of me ! I sent her photographs of Eloise with the balloon this morning, she thought she looked really healthy. I also made her emotional as Eloise will be wearing a "Z" brooch to her prom and I shared a picture of it with her. I'm acutely aware that Zara should also be choosing her prom dress right now and sitting her GCSEs . Sadly more milestones never to be reached. 

      So today another wooden heart has been added to Eloise's box of pretty coloured hearts. I also bought her these two hand crafted wooden interconnecting hearts in beautiful coloured wood. Their lids are fixed on by magnets so they can swivel open or just be removed. A fitting gift for a very important post transplant milestone. 

      

Then of course there was cake this evening, fifteen candles, fifteen white chocolate hearts on a butterfly cake. Eloise loves cake ! 

     

                                      

Facing the Day 15 years on (23rd May 2002)

Facing the day 15 years on (23rd May 2002)

       

Fifteen years, how can it be that long ago yet remembered so vividly ? 15 years since the simplicity of my family life erupted and left a confusing, tangled and broken mess. A life full of fear for the future of my child. I think this anniversary is another big post transplant milestone to get to, after the initial survival statistics of 5-10 years they upgraded us to 10-15 years. So here we are, Eloise is here, an outwardly healthy 16 year old , she's taking her GCSEs like her peers right now and preparing for her prom. Life's pretty normal for her and that's good. So let's try and erase those statistics as they are detrimental to my mental wellbeing, anyway I think we may have upgraded Eloise to 20 years now ! 

     I remember bringing Eloise home post transplant and crying so much. I saw no future at all. I couldn't look ahead, I even got rid of all of Leah's outgrown clothes as I didn't think Eloise would need them. A year after Amelia was born I put the girls in the same bedroom. I was still fearing the worse and I didn't want to deal with an empty bedroom. Then I didn't want to send Eloise to school, I didn't want to share her precious days. When other mothers cry as their children get older and move on from a class or a school I celebrate. Eloise has completed 12 years of school and I'm so very proud of her, she's a super human, she's very much herself and I love her. The future of Eloise's health will remain uncertain but we will do all we can to keep her heart happy and healthy. No more Gregg's Tours Eloise !!!!! 

        In so many ways I wish I could erase the 23rd of May from my memory. I think I'd like to forget about it and not have it on replay in my head. I used to think forgetting would help me overcome it. Now I know that such a pivotal life experience cannot be erased or truly forgotten about. I think all that's happened over time is I've been more open about how this date makes me feel, what I go through and how bloody hard it is for me. I think this has helped me to heal a little, last year was the first time I didn't cry on the day and I've also just got through my resuscitation training with minimal mental trauma and flashbacks. Healing from the wounds inflicted by a traumatic experience takes time, perseverance, faith that things will get better mentally and hope for a more settled mind. My memory can be such a monster. 

     

           Through writing this blog I have found myself a safe environment to let people know how I feel. I know when I need to write as part of "my therapy" the words start popping out and I feel the need to write them down. Afterwards I feel relieved and calmer. If I'm in control I feel protected . The same goes when I'm having a conversation with someone about Eloise and past events. I can talk freely and without getting upset or emotional. However if the other person suddenly pushes a trigger with no warning I can become quite choked with the need to fight my tears. This only really happens with strangers as I've surrounded myself with a safe social support network, through social media and in reality too. I am lucky that I have the right people by my side that allow me to express how I am feeling without judging me. They never feel I should be over this, as I won't ever be. These traumatic events have changed me for ever, but that's ok. 

         

         

     I have also developed skills for dealing with emotionally tough days. I usually need solitude on days like that. So I tend to lock myself in the bathroom, with music, candle light, Earl Grey tea and some luxurious bath products. These baths usually last between 1-2 hours but they help so much. My other source of therapy is the gym, I go through phases of detesting the place but I know it's done so much for me mentally. Hoping the flabby body starts to respond to the exercise soon !!!! Anger and frustration is safely dealt with, in fact on days when I feel this way I actually put much more effort into my gym session ! Focusing on my physical health and allowing "me time" has helped me mentally too and my dire sleeping habits have improved so much this year. I'm now sleeping for 7 hours a night and usually I get the magical 8 hours once a week, go me ! 

            I now think it's perfectly alright to remember this day, it's part of my life history. It can't be ignored so is it better to talk about it freely ? I think so, it can never be swept away, so better to confront it. It's one day, so I think it's ok to give it my time and thought and think about what's happened since. I'll always grieve, what I lost was huge and I'll always feel guilty for feeling such grief as my child is alive. I think I've worked through quite a lot of the trauma in more recent years, I didn't believe in the whole "time is a great healer" thing but actually although I'm out of reach of being healed I've made progress. I'm proud of how far I've come,  that's enough for now and probably forever.

        I have grown into the woman I am now by getting through this traumatic experience and the days, weeks , months and years that have followed. I feel so much stronger, determined, empowered , resilient and independent . I think I've remained a compassionate soul, I hope so, as I do care.  Despite the emotional trauma of living with a life limited child I am generally satisfied with my life and I have retained my realistic optimism. 

      So here we are are again 23rd May, let's do this..........❤️

Never Goodbye

     

                              

It's not Goodbye

I think a year or so ago now I wrote about change and being stood at a crossroads . Well the traffic lights have changed to green and I'm about to make a change in my life.

         On the 16th of May I will work my last shift as a permanent member of staff on ward 36 at Bristol Childrens Hospital. I've worked as a paediatric nurse in the kids hospital for 20 years on ward 33 originally up in the old hospital . Then this became ward 31 when we moved down the hill. In December 2002 I was redeployed to ward 36 after Eloise's transplant and have continued to work there for 14 years.

        I love that hospital, I love the wards, the corridors and its warmth. It's been a second home to me. Most importantly I love the people in it, those wonderful people I've had the privilege to meet and work with for the past two decades. I'm lucky enough to call many of them friends and some are more like family members now. It's been my safety net but it's time to move out of my comfort zone......slightly. 

     

                       As well as holding so many happy memories for me it's also the place where I faced my darkest of times. It's where my whole life shattered around me to never be the same again. It's nearly 15 years ago now since I brought my poorly Eloise into A/E thinking she had a chest infection. You know how that story unfolds . It's a day I'll never forget, conversations that are inked into my brain forever. Cubicle 1 , how I hated hearing the Drs talking outside the door, I heard their every word and my world came crashing down. I also remember every bed space Eloise occupied in PICU before she ended up in a cubicle. I remember many conversations, I remember the quiet room, the prayer room, the parents room with Bunkbeds. I remember too much and it hurts. It was so hard being on the other side meeting my colleagues around the hospital and having to explain why I was there out of uniform. 

          However I owe that hospital so much, they stabilised my baby, they gave her fragile heart all the support it needed, they kept her alive against the odds. They also knew when to seek another opinion, when there was no more they could do. They safely transferred Eloise by plane to the Freeman Hospital in Newcastle at the right time. Since then Eloise has received excellent cardiology care , thankfully mainly as an outpatient . She has had two visits to ward 32 one for rejection 7 weeks post transplant and one for pneumonia, one stay on ward 31 for chicken pox treatment and one visit to 36 for an adenotonsillectomy. I trust this hospital so much with Eloise and I feel the staff really care about her and how she's getting on. Soon even Eloise will be saying goodbye to BCH as it is time for my baby to transition to adult care. 

        I am so glad I moved from London to Bristol , it was the right choice and I've been lucky to work in such a wonderful children's hospital. Working in a general hospital on a paediatric unit is good but for me I preferred working in a specialist paediatric hospital. As you may know I'm no career woman, I just love children and my main aim in life was to be a mother and life gave me four of my own beautiful children. So work wise all I wanted to do was work with children so that wish came true as well. 

                                           

    So that brings me back to my change, my leap of faith. I maybe leaving Bristol Childrens Hospital, but I'm not leaving the trust or paediatrics or day surgery for that matter ! I'm going to work at the Dental Hospital, in their paediatric day surgery unit. After Eloise was ill and it was time for me to think of returning to work I was sent to occupational health to be assessed by a Dr. It was like an interrogation and he broke me, I cried so much. I never thought I could nurse again, I didn't want to walk in that hospital building full of my fears and ghosts. In the end it was decided that I should move wards . One of the options that I considered at the time was the dental hospital but in the end I went back to BCH and with a lot of emotional support in the early days I survived. So the Dental Hospital will mainly be a new venue for me and a new group of ladies to get to know, but the nursing will be similar. Even upped my hours.......by half a day and given up the term time contract. There have been lots of changes over the past two years on the ward where I'm working now and I'm not always the best at dealing with change . So for me being in control of the changes to my career is an easier option to cope with. I know I've made the right decision for myself and my family and work/life balance is so important to me. Long term this new role will help me to continue to have the best of both worlds. I'm so lucky that this opportunity came along just when I needed it. 

    So this is it a time for new beginnings but it's not the end. Part of me will always remain in my beloved children's hospital. I have so many lovely memories of the children and families I have nursed over twenty years. We had so much fun, I think the best of times were spent at the old children's hospital on Ward 33, god it was cramped but it was full of love. I will always remember that ward fondly and our lovely Sarah who bonded us so closely together. I am so lucky that she became my friend, birth partner and godmother to Eloise. She's so missed.  As for Ward 36, we did like to put on a good spread and buffet didn't we ? The support of my ward 36 ladies and our Graham has got me through quite a few important episodes in my life and I love you all for it. I'll miss you all so much. 

     Thank you Bristol Childrens Hospital and all who work there and use the hospital for giving me twenty years of happy employment .