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 . 

                                 

     

Face to Face with an Unlocked Past

Face to Face with an Unlocked Past

                                    

      

By the time you read this it'll be over. The thing I'm laying here dreading will itself be in the past, dealt with, finished, over. Just a memory and hopefully an easily dealt with and soon to be forgotten memory.  Tomorrow it's my Intermediate Life Support Study Day, hard to believe it's been two years since I last feared this day. A day filled with information and role play, so I'm sure it's not a favourite with many of my colleagues. 

    Rationally I know it'll be fine, my track record reminds me of this. I did cry last year, maybe I'll cry again tomorrow. Not because I'm a lousy actress, well maybe I am ? I look ok don't I ? In control of my life and it's contents but I wing it ! I feel sick, my anxiety levels are high, I'm breathing deeply and exhaling loudly and chocolate isn't helping. I went to the gym earlier that helped, it blocked out this looming fear of mine. I worked bloody hard making sure muscular pain outweighed the mental pain. Then and there it helped but I only felt calm fleetingly. Next to me in my bed I have the "Paediatric Intermediate Life Support " manual, third edition no less, it's mocking me. 

           Tomorrow I'll return to some of the most horrific days of my life and I will see, hear and feel them all over again and I won't be able to stop this happening. The reel is already primed in my head ready for someone or something to press the trigger tomorrow. It maybe a few words, "the acutely ill child" or myocarditis. It maybe squeezing the chest of one of the dummies, or the noise of the monitors alarms. I know I'll return to my hell. I've seen too much, dealt with too much and felt so much. 

I know these flash backs will never be erased. I could pay someone £50 an hour to listen to me or sign up for some therapy sessions but they cannot take my memories away. These horrific days don't haunt me often, just on very special occasions like this. I guess on other days when my flashbacks hit me I'm alone and I can choose how I deal with them. This puts me on display. What do you think ? I wonder if people think it's strange that 15 years on I've not moved forward with this. As nurses do we ever think of the impact these events have on our patients and their families future mental health ? I hope so. Maybe I needed "debriefing" after I watched my daughter arrest ? It was like it wasn't really happening, I couldn't tear my eyes away. Willing her to keep fighting, as soon as she was stabilised she was wheeled away into theatre. I can't imagine what it must be like if those images of your child being resuscitated are the last you ever get to see. 

          I'm now biting my nails and they're rough, just let out a massive sigh too. I hope I sleep tonight. I want some peace, some oblivion and some respite from my thoughts. However irrational they maybe....... 

                         

      7.45am, day follows on from night and I actually slept my average 7 hours last night. I woke at 5am but settled again. My stomach really hurts and I feel nauseated, sorry if too much information but I even dry gagged as I feel so sick. Managed breakfast and a coffee. My heart is racing, it's giving me palpitations too. I'm trying to be positive and calm. I know nothing awful will happen today and the day will pass but tight now my logical brain is switched off or jammed.........

5.15pm Ok  it was just that ok, no tears and I only lost two nails during the day, although another two are rough and chewed. I'm ok, my mind is a riot of memories right now all whirling around. I'll spend the rest of the day searching through them and collecting them. Memories that need to be captured and boxed away again. Tonight I may not sleep but I'll try . I usually struggle post events too. But I'm pleased with how today went, it was a positive day.