Another Day

 

23rd May 2002 the trauma began when Eloise was diagnosed with myocarditis and ventilated in Bristol Childrens intensive care unit. I chose not to deal with the pain of this happening by boxing it away inside my head. It worked ok, protecting myself and those around me. Occasionally the box lid would lift and the horrors of what I’d seen and heard played on a loop inside my head. Until I’d slam the lid down again. Then in 2013 I started to write my blog and that’s where I let everything spill out. All my words, my emotions, feelings, fear, sadness etc spewed out. I shared, I over shared and I started to heal. Yesterday the day was beautiful, bright blue sky, sunshine and a trip out to a show and dinner with my mum. Just a day, not a traumatic event, not a flashback just a new memory banked. I’d made it through unscathed. 

            I don’t think I’ve moved on from the experience as such or learnt anything from it, I’ve neutralised the pain. I’m still emotionally involved but I’ve processed some of the feelings around that day and slowly shifted my mindset. Time has faded the experience as new memories are made, the intensity of the pain I felt has diminished.

                  I have spoken many times on my need to stay in the present, I think this keeps me focused and living in the current moment. I’ll always have grief and I’m not sure reaching acceptance is ever a thing but I’m definitely more in control of the date now. I’m more protected and others have some sort of level of understanding for how I deal with things as I’ve been able to be more open. Therefore social support has helped me navigate my feelings but not dismissed how I feel. 

          The pressure in my internal black box is very manageable now. I’m not trying to push the lid down so my trauma isn’t continuing to grow. I’m not threatened by it, haunted or fighting to stop it overwhelming me. Yesterday I acknowledged the date, knew its significance but I didn’t go anywhere in my thoughts. The day just played out, it was a good day. When planning my dad’s funeral date my mum and I both acknowledged it couldn’t be on the 22nd of May Amelia’s birthday or the 23rd May . Like me my parents hadn’t forgotten the significance of the date. 

                  Also because of my dad dying recently and all the time we’ve spent sharing memories of our time with him and planning his Celebration of Life send off, everything else has been put aside. We are dealing with another trauma and significant life event in the best way we can by spending time together and making sure mum is ok. Together we will get through this. 

I dedicate this post to my dad.

Life Lessons after Warren’s death.

 

Life lessons learnt after Warren’s death - I already knew this one as I was taught it decades ago. What a privilege growing older is, when not everyone has the chance to. You realise how important it is not to take anything for granted and tomorrow isn’t promised however old you are. Expect the unexpected and live each day as it comes.

Realising the resilience of the human race. Still, now, I think: ‘How did I get through that  day?’ Being in the hospital after Warren’s first cardiac arrest, telling his family and friends he was critically ill and then dead plus normal day to day functioning that’s needed as a parent. Even on days like that your heart keeps beating, your lungs keep breathing and you carry on. 

That it’s ok to talk about grief and death using whatever vocabulary is right for you. I choose not to use lost or passed when talking about death, I feel those terms can be confusing so I just use dead and death. It maybe harsh for others to hear but it’s how I wish to express myself. I also get no comfort from seeing white feathers, dragon flies and robins, I don’t want to be watched over and I find angels wings scary. However I like seeing robins as they remind me of visiting National Trust gardens. If something gives you comfort it’s right for you and I’d never mock someone’s beliefs for seeing something as a sign from their loved one. In return I think it’s ok to say it’s not for me.

Warren’s death made me reevaluate who I want to spend time with, some people walked out of my life, some faded away from me and others stepped up and became so important that I couldn’t imagine a time without their friendship. Then there are the treasures who’ve been there for all my tough times and have never faltered in being all I need them to be. I’ve also learnt I’m very happy to be single and not to be curious about dating apps like Tinder ever again ! 

I’ve learnt it’s ok to happy and to make plans. The pandemic put everything on hold, so I had plenty of time to sit quietly with my thoughts and memories of Warren. Now we think of him and his antics every now and then and there  are little reminders of his presence in the house . It’s not sad as most things Warren got up to made you laugh and shake your head ! When I was with Warren we spent so much time in the country at hotels or visiting National Trust Properties now I’m back where my heart is happy visiting cities. I love being in London so much and Warren hated it! I’ve already got three more trips there planned for this year. I do think he’d have loved one of my new favourite places though Kew Gardens. I do cherish the adventures we had exploring new places and I’m grateful for the time we had, it’ll always be an important chapter. Another life event where I adapted and evolved as a person.

Since Warren’s death I feel more of a sense of urgency to do things I’ve wanted to do for years. The don’t dream it plan it mantra is a favourite at the moment. Next month I’ll complete my 50 things for my 50th list, I almost gave up on it after Warren’s death . In the end I adapted a couple of things and chose a couple of new ones. I think he’d be shocked that I’ve had so many things done to my house this year, I was brave ! I’ve started a new list Live Life Happy so I look forward to more adventures and making memories.

I’ll be honest what I find hard is once someone dies they are remembered for their good qualities, other parts seem to be erased. However in life people negotiate the ups and downs of relationships daily. It seems wrong to say anything negative about someone who is dead and they become a saint. Again I’d rather people were honest, no one is perfect and the imperfections add to the character. To me it keeps Warren more true to the person he was when alive. Yes Warren was a good man, caring, generous with his time, helpful, loving  but he was also a great one for sulking , being grumpy and a liability……..I learnt tolerance and realised we both needed our own space especially when sleep was involved, he was a snoring night owl, I was an insomniac lark at the time ! Plus I’m practically tee total and Warren was at the other end of the spectrum. 

I like Lois Tonkin’s 1996 Dr. Lois Tonkin, in her 1996 article Growing Around Grief: another way of looking at grief and recovery well worth a read. Basically the grief doesn’t shrink you slowly build life around it . I started off with keeping Mondays special every week as they were often a day Warren and I spent together , then we had a pandemic so that stopped for a while. Then as soon as I was able I made a lot of plans and I feel my life has expanded and I am spending more time with those whose company I enjoy, including my own company ! 

I sometimes wonder am I grieving as I should? I do also wonder if grieving during a pandemic when you’re focused on keeping those you love alive makes grieving different. Also we were initially all isolated from each other so it was easy to believe Warren was away at work or at his own house. It’s three years and I just remember the happy times Warren and I had , we had plenty of adventures, turns out for Warren it was a lifetimes worth . I don’t feel sad or upset for myself and I don’t cry. It’s just wrong when someone young dies, he was two years younger than me and age wise I’ve had five extra years of life than him. Any anger I have is over the fact he didn’t have more time to enjoy, he’d recently got a job he loved as our local community PCSO, he’d moved into a new house share and got himself a better car. Then he died. I do think things could have been different if he’d received more investigation into an episode of chest pain in November 2018 and had the correct follow up but I’ll never know. 

            Although I say I only remember the happy times, I’m lying in that I also remember vividly the day Warren died and the days after with his funeral in Ireland being horrific . Those days are currently playing in my head this morning, like a film at the back of my eyes. That’s traumatic events for you, they seem to have the ability to not fade very much and whole conversations are remembered. I also think the conversations where people have said completely the wrong thing also leave a deeper imprint. It took a year to find my peace from the aftermath of Warren’s death and how I was treated by certain people. Letting go is hard.

If you’re still here after reading all of that , thank you and well done. I hope to spend today reflecting on the five years worth of days spent with Warren that lead up to this horrible day in 2019. Celebrating his life and not his death, remembering him emerging from the bushes on our last holiday in Turkey as he’d fallen over extremely drunk by 10am ! That was Warren 💙

Twenty Gifted Years ♥️

 Twenty Years ♥️

Twenty years, impossible to imagine dreamed of years , yearned for, cried over , terrifying years, normal times, sad times but always a life that was lived. Twenty years, twenty gifted years, the life line thrown to Eloise when Zara couldn’t live here any longer. Hope, organ donation gave me that. Organ donation helped Rebecca cope with the devastating loss of her precious daughter Zara. It has helped her over the years knowing Zara’s heart beats on. 

Organ donation, never a cure but when you’re faced with death and offered a second chance at life you grasp it firmly and go with it. Life isn’t the same, for some part it’s better as every day has more meaning than it did before, time becomes precious. Dreams aren’t for chasing they’re for planning. Yet a level of anxiety is always there, heightened alert and fear for the future, you lose your naivety. 

            Some of you have been here right from the start of Eloise’s transplant story. You looked after her and me in Bristol Childrens Hospital in PICU when my whole world was broken or the Freeman. Mandy I’ve never forgotten seeing your lovely smiley face when we returned from Great Ormond Street and Eloise was admitted to BCH with rejection. So many people couldn’t face me , unsure what to say but you came in and got Eloise to have her ecg without being upset. You and Stella remained our favourite cardiac techs , a highlight of outpatient appointments. 

              Friendships old and friendships new , you can’t do transplantation without the right army with you, it’s gruelling mentally . A real roller coaster I can happily handle but the post transplant roller coaster is a trickier beast and it’s best we all scream together. We laugh, we cry and hopefully get another day to laugh some more. Recently some transplant legends have died and I bloody miss them, my inspiration and my hope and my support. Eloise is probably one of those legends to the families of young transplanted children, she’s their hope. Thank you friends, thank you colleagues , thank you NHS, thank you to those who set up the organ donor register, thank you organ donors, thank you Zara and thank you Eloise for being a complete and utter star ⭐️ Twenty extra years with you ♥️ From 21 months to 21 years. Through every stage of the education system and beyond, your story continues………..

Just Another Day 23rd May 2022

 

7.15am -23rd May 2022 is here and I feel nothing other than anticipatory nerves as Eloise has a heart transplant clinic appointment this morning at Papworth. When Eloise received the appointment for this date last month my heart pounded and I felt sick. Of all the dates, it was this one the 23rd May, a date that’s so vividly remembered 20 years on. A day that became one of the worse days of my life. Eloise offered to get it changed and I did give it some thought. However I have Mondays off work and as the appointment is at 8.25 we had to come here yesterday. We’ve also missed being with Amelia on her 19th birthday but I don’t think she needs me cramping her style. Time is a great healer they say and perhaps it is. The scars of what went before remain with me, but I’m processing things differently. I’ve chosen to not think about 23rd May 2002 and I now have control. Today is just another day. 

           11am- today is a good day, Eloise has had her appointment, good ecg, chest X-ray and blood results ( how speedy was that !) She’s doing really well, no concerns and will have a CT angiogram at her next appointment. To be fair as she was only seen at the Bristol Heart Institute last Monday I went into this appointment as relaxed as I could be. Always getting Eloise to look for high spikes (voltages) on her ecg as low spikes are an indication of rejection. I no longer go into Eloise’s appointments , I’m just here as her travel companion. I don’t think anything will change how I feel today. Living in the moment is the best way, I think the past will stay shut in its protective box in my head today. If it does creeps out it’ll just be in the shadows tonight. 

12.38- More thoughts, I think the turn around started 3 or 4 years ago, each year the build up got less and less until this year, absolutely nothing. Warren’s unexpected death followed by a two year pandemic has just confirmed that I’m totally right to live in the moment and see the joy in every day. Some days it is a struggle to stay positive but I usually manage it. I’ve had a few (now resolved )health issues over the past year and I’ve questioned my own mortality. Even during those days I still made plans and doing things I enjoy with those I love really helped. I like to live not to just exist, making memories and taking a lot of photographs is so important to me. Plus my ever increasing Jellycat Crew.Just do what ever makes you happy. Time is not something we will always 

    have, so if you want to do something do it now. Don’t dream it, plan it.

Cardiac Arrest ❤️

 Cardiac Arrest, something I’ve known about since I started my Adult nurse training in 1989. Something I’m trained to deal with or be aware of the warning signs. Something that’s touched my life twice with differing outcomes. 

         One cardiac arrest I watched, floating above it , it felt unreal like an episode of Casualty. I held onto hope as that’s what CPR means, it means that someone is trying to save your loved ones life. There was a chance of survival but I was also aware that my daughter was dying. I was reliant on healthcare professionals and I was willing them not to stop cpr until Eloise’s damaged heart started again. Thankfully it didn’t take long, I can’t really say she was stable as Eloise’s condition was so fragile . She was then taken to theatre for her heart transplant, she arrested again in theatre , something I wasn’t aware of for many years. It’ll be twenty years soon since this horrific day but I remember the event so vividly in technicolour and whole conversations, the difficult kind of conversation.

         The second cardiac arrest I never saw yet it’s equally as vivid behind my eyes . I suppose what I see is the bedroom I’d visited and Warren being worked on mixed in with faceless paramedics perhaps even those from the programme Casualty. Those two paramedics must have been exhausted as it took over twenty minutes or so of cpr and using the defibrillator to get a faint heart beat and Warren stabilised enough to transfer to hospital. Like Eloise there was a second arrest in the cardiac catheter theatre unlike Eloise Warren could not and did not survive. However I know every single person involved in his care fought for him and didn’t give up until Warren’s body said no more. I think this sudden loss involves being left with questions and some have no answers. Suddenly losing Warren after a cardiac arrest involved strong feelings of unjustness , he was far too young, he looked well, he’d had an MOT at his GP surgery. However I could also get some comfort from the idea that dying from cardiac arrest avoids prolonged suffering. I even said this today as I’m sure if Warren had survived he would have had extensive brain damage.

         I think losing Warren to cardiac arrest was such a huge incomprehensible shock. To me being in cardiac arrest is being on the border of life and death. I see it being like you see in films when someone is walking towards a tunnel of light. They are hovering between living and dying but someone is trying to tip the balance towards life. 

      Why am I writing this? Well today I’ve done two lots of e-learning on Adult Basic Life Support and Paediatric Basic Life Support and I’ve revisited intensive care at The Freeman Hospital and the A/E relatives room at the BRI . Sucked back there and replaying two bloody awful days when hearts stopped beating. The brain likes to store traumas and for the most part the memories don’t touch me but some days they play on repeat that was today and that’ll definitely be tomorrow . This is when being a nurse is hard for me, it’s a bit too close to home. 

Warren 30/12/71-23/08/19

      

Remember the Life not the Death.

 

I originally started writing a few words ready for today the anniversary of Warren’s death a week ago. Out of nowhere I got the urge or need to write a few things down again. However I’ve been thinking a lot more about it and my words have evolved. I’m struggling with thinking of Warren on the day he died, I have absolutely no good memories associated with him on that day except perhaps that he’d read my early morning WhatsApp message. Without actually seeing the events that lead up to Warren dying with my own eyes I can imagine the call for help, the ambulance crew working on him and them not not giving up and the same happening in A/E. I can see him but not in a way he should be remembered. As with all my bad memories my recall of that day is strong and I’m so grateful that Shelley was by my side, yet again. Thankful that Warren’s PCSO colleague and friend Paul came around and looked after me and started letting people know . Then Andy, one of Warren’s police bosses came around and we talked and made plans for Warren’s memorial service.Today I’ll remember those people and that will be my focus as I’d rather remember Warren on days he was truly living and we were out and about having fun together with the 3 frogs.

My experiences of grieving as an adult were limited before Warren died, the ones I’d lost most recently died of old age not illness , that’s the order of life we expect. I think grieving during a pandemic is different but like I say I’m no expert. For me the pandemic started just 5 months after Warren died and my survival mode clicked in and my focus was solely on the living. My fear was for Eloise and my parents , my thoughts were taken up with the reality I was in and not Warren. I missed so many people including Warren, I could even think he was just keeping away while we shielded Eloise. My grief for him, mingled with the life I wasn’t experiencing . My family was very important to Warren, he looked out for my children and helped them whenever he could. He’d understand they were a priority, writing the word priority has made me smile, I loved how the word sounded with Warren’s Irish accent.

                         Traces of Warren remain here, his police hat in my bedroom, his frog called Flash, his crystal glasses in the dining room display case, his favourite mug in the kitchen and of course the diy cupboard holds his tools plus other reminders.Recently I found two pairs of his dodgy sunglasses in my car, it made me smile. We didn’t live together , that’s why we lasted for five years ! We weren’t that compatible on the living together front, one night owl and one lark who wanted to smother the snoring owl. The owl liked drink…..too much, good job he did the recycling. However by not spending every hour together we made plans and I loved our adventures. It’s now the 7th year of having a joint NT membership. I couldn’t bear to take Warren off the membership for a while, I wanted a new card with Warren’s name on as his family had his old one. I still carry his now out of date card around in my purse, Eloise is now the second adult. Warren would like that. I think our NT joint membership was our biggest commitment, bought just a few weeks after we met, the memories of those first days out are popping up on my Facebook.

 I do think writing everything down in my Facebook photo albums really helped my grieving process. I could vent every thought, feeling, emotion quite openly however good or bad they seemed. Writing felt safe and I could be honest. Support wise, my work ladies were and are amazing, such a great team and I’m lucky to have them. Our bond over lockdown grew even stronger. Plus I have fabulous friends in reality and in social media land. People say things like “give yourself as long as it takes” to recover, how do you know if you’ve recovered ? I know you shouldn’t compare grief, you can’t it’s all personal to you. I did feel guilty for saying I’m ok, but as my friend Mark said Warren would want me to be happy. I still fear saying I’m happy out loud just in case , stupid I know….

                   There’s just one first that’s not been done yet, the first family holiday abroad without Warren. Corfu was booked for 2020 and rescheduled for 2021 then cancelled again by me. I’ve now changed my booking to Turkey. We’ve been there many times as a family and we had four holidays there with Warren including the one just before he died. We will definitely raise a glass to him and go on another beautiful sunset cruise. My diary is filling up again with plans and adventures. Sarah and Kyle kindly take me on NT adventures so I don’t miss out . I catch up with friends, it’s good to see them. I have nights away on my own which I sometimes need, I’ve only been home alone once in over 18 months. I’m not lonely , loneliness after loss must be so painful . I don’t need to replace Warren, actually I think he was a one off ! I just needed to adjust how I spend my free time. Time is precious, I wish Warren had been given many years more. He definitely had plenty more living to do. We have to make do with the memories and I have plenty of those that proceed the date he died 23/08/2019 that’s what I need to celebrate not today. 

    So raise your glass and toast the legend that was Warren Rodgers, he’d probably like it if you drank far too much but it is a Monday ! 💙Warren 💙

Finding Peace

 Finding Peace.

It’s been a very long time since I used this blog, this is my first entry of the year. I don’t really need it any more. The words I felt unable to say and the feelings I felt I couldn’t share are out in the open now. I found my voice, a whisper at first but now my voice is steady. Writing things down enabled me to be more honest with myself and with you. I totally recommend writing as a self help therapy, I’ve read some of my posts over and over again. 

Today is the 23rd May , usually a date of huge significance to me, this year it’s taken it’s place in the calendar without causing me any pain. It became another day, a day I didn’t fear , a day without build up, a day without flashbacks or triggers. Just a date in the calendar saying one thing Hub Box 1pm , a lunch reservation for Amelia’s birthday. Of course I can sit here now and use recall to set the memories of the 23rd May 2002 into motion. I can play conversations from that day in my head, I can see room 1 in A/E, I can see paediatric intensive care and the “quiet” room. I remember the hushed conversations, the looks, the pity and how small Eloise looked lying ventilated in a cot......all of it is etched in my brain. However I can flick the switch, pop the lid on the box and feel at peace. I think the above quote sums up what I’ve finally managed to do. The day will never cease to exist it just won’t take my peace.

   We are now 19 years on from that date. The date is no longer important , it probably never was. I just fixated on it. 23/05/02 was the day Eloise’s myocarditis was diagnosed but silently her heart was being attacked by hand, foot and mouth virus for over a month until her body could no longer compensate and her heart failure became outwardly noticeable. I will have grief, I will have anger but if I get wrapped up in those things I’ll forget to enjoy what I still have ,my Eloise. Always grateful for every extra day I have ❤️

    

Goodbye my 2020

 2020

Not sure where to start with this. I know many have found this year hard and will call it their worst yet and that’s their prerogative. I can’t say I feel that way. I try to look after myself and my family and not get too caught up in what everyone else is doing. I just can’t do angry for very long without it making me feel exhausted and miserable. I trust my own judgements , I trust what I feel is safe for myself  and my family to do. I also realise that mental health needs to be considered and I’ve had to give that some thought and act to look after my childrens and parents mental well-being . Of course there’s been disappointment because of broken plans, missed holidays, missing catch ups etc but I’d rather that than the despair of losing a loved one. I’m privileged to be able to go on holiday etc during normal times when other people are struggling. We initially had food parcels from the government as Eloise was shielding so I’ve tried to pay it forward by donating to the food bank and to Fare Share Bristol. So here are some random ramblings from me to end the year.

Knowledge I already had nurses make the best friends.

2020 just reaffirmed that .

⭐️They share the same keep calm and carry on nature so the same resilience.

⭐️the caring nature , the empathy , the top listening skills (well the majority anyway) 

⭐️ they tell the best stories , you know who you are. 

⭐️ they have the best sense of humour , it’s sometimes a sick sense of humour but we laugh anyway.

⭐️they are always happy to sit down have a cup of tea and cake with you. They can be bought with sweet treats and love a new on the market chocolate bar to taste test.....thank you Queen of Treats. 

⭐️they give the best medical advise , basically telling you to get on with it . There’s no time to be sick ! 

⭐️they are trustworthy and you can talk to them in confidence as we are taught that kind of thing online every bl**dy year and of course we owe a duty of confidentiality. 

⭐️on the other hand gossip is good , keeps us entertained during this lockdown life.

⭐️ as a workforce they just get on with it, if there is moaning it’s collective moaning and who wants to freeze in sub zero conditions indoors or work with beep, beep, beep ten times a week.

⭐️ they are also prone to exaggeration, see above. 

⭐️ they can even make you laugh while in full PPE, actually just by looking at them in their hazmat suits more suited to a 6ft man mountain. 

⭐️ apparently they can even save your life. I think this means in a resus situation but this year talking has saved sanity and mental health. Being together has meant everything. 

In this year like no other , I’m so thankful for my work family. These ladies have been rocks and true friends. They’ve definitely made the situation so much easier for me. It’s nearly my 32nd year in the NHS and this year has been like no other. Although I do remember how tired I was and how sore my hands were as a student nurse, nursing during a flu epidemic in November and December 1989. The peak of that epidemic saw an infection rate of around 575 people per 100,000 and there were between 19,000 and 29,000 deaths during this outbreak. This time around although a key worker I’m most definitely not frontline but we all have our role to play keeping the NHS going. Except I did bow out for two months as I had a huge conflict of interest between my home life and my work life. I needed to minimise the risk of Eloise catching Covid-19, I was just so lucky that my managers arranged a period of unpaid leave for me and my colleagues understood. While I was off we received lovely door step deliveries from them to keep us going. 

    I’ve missed my old ward family my ladies from ward 36 and hope to see some of them as soon as this is over for our dinner dates and catch ups , we may need at least monthly meetings to get all the chat in. I’ve also missed seeing my original nursing friends Julie, Lisa and Emma from my RGN training in Exeter. We usually get together 2 or 3 times a year. Julie was one of the last people I went out with in March. 

       I’m so proud of the NHS and all those who work there, you’re all amazing, my heroes. I hope the vaccine gives us back our lives.

I’ve learnt it’s ok in the slow lane.

It’s ok to sit and just be.

Take away picnics on a park bench are a good thing.

Seeing a friend for a hot chocolate is fun.

YouTube is my exercise buddy.

I’ve learnt to bake.....nah that’s a lie.

I’ve learnt a new skill, nope that didn’t happen either.

I love my Nintendo switch and Animal Crossings.

Amazon Prime is a blessing during a lockdown.

I don’t like watching TV , I knew this.

I can’t rewatch films or reread books 

I’ve not done one zoom meeting, quiz or call, hurrah. I did use Face Time once on Christmas Day 

I’ve not been alone in the house since March and I’ve coped.

I miss aqua aerobics, the cinema and going to the theatre.

Percy Pig is a top lockdown purchase.

I’ve not found this year hard as I’ve had worse.

I’ve taken every opportunity to do something this year when covid restrictions have allowed. 

There’s more of me but mentally I’m in a good place and a broken mind is harder to treat then the extra weight I’ve gained.

Cake is life......and fattening, sigh.

I’m alive and so are those I love. 

2020 I can’t complain, thank you for all you’ve taught me. I feel well equipped now for the rest of this hour, day, week, month, year, decade and beyond. 2002 taught me so much and altered me, just swap the numbers around and we have 2020. Living in the moment and seeing the good in every day has truly helped me......plus a little help from my friends. ❤️

         

Keeping it Real

 

I’ve given this quite some thought before putting these words down. So here goes, I’ve found being honest during this pandemic hard at times. I totally appreciate the whole we aren’t in the same boat thing and that it’s not a contest. My life has never had been about that. I’ve been navigating my own boat for decades and weathering my own storms, as for winning , not really but I always take part in life. If I said I was struggling and finding this situation hard I think I’d be well supported but when I say I’m ok and life hasn’t altered too much I feel I should have said nothing. I know a lot is uncertain right now and the country is struggling because of coronavirus but having a good day, week, month, season shouldn’t feel wrong. I think it’s important to give yourself permission to savour those moments of joy, even in the face of a pandemic. In fact, it’s important to enjoy all the little things during times like these. For me it keeps life real, it makes it manageable and varied. We all react to situations differently in normal times so we shouldn’t be surprised that this is still happening during the pandemic. 

               This slower pace of life has made me stop and face Warren’s death and deal with it sooner than perhaps during my extremely busy on purpose period of life. For that I’m grateful. Lockdown gave us the opportunity to be a family of five under the same roof for 6 months, precious time that we wouldn’t have had. Shielding was hard, that’s why we gave up after two months, we couldn’t make it work and I watched my children’s mental well-being start to slide. I couldn’t keep Eloise locked up away from us. So the hardest part of lockdown was Eloise being in the extremely vulnerable category. We’ve spent 18 years treating her normally and the virus meant that had to change and we had to acknowledge her medical conditions head on again. Transplantation and immune suppression became a focus. Once we stopped shielding life shifted a little back to the new normal. Lockdown has made the relationships that I have with my work ladies even stronger, they really are true friends. We have been through so much together this year, so many traumas, upsets and challenges , but the important word I’ve used in this sentence “together” We have also celebrated and continue to make plans. 

  No this year hasn’t been the best but I’ve had worse times.I refuse to write it off , the Summer would have been wished away to reach an Autumn and Winter where let’s face it nothing has changed. We are still in uncertain times living with a virus that’s currently going nowhere. Like most people I like making plans and having things to look forward to and sadly Covid has meant most of those plans have been cancelled or postponed. However I’ve made new simpler plans and managed some spontaneous catch ups with friends, I’ve said yes more to any opportunities that break from the routine of work and home life. Hastily made plans can still work as our trip to London at the weekend showed. 

        By writing this I’m just acknowledging what the last few months have meant to me. I’m optimistic by nature but can be swayed into being a realist and this pandemic is something I have to keep real. People are dying, because of contracting Covid, because they’re not receiving specialist care for other conditions and because of suicide. I’ve seen my own parents age since lockdown and heard stories of the decline in health of many of our elderly and disabled population. 1 in 5 of us will have experienced depression during lockdown , so I totally support the latest ITV campaign Britain Get Talking campaign “No call should go unanswered “  I’m lucky as I’ve found the tools that keep me well mentally and what I’ve learnt has stayed with me during the pandemic. Yesterday we bought the soft toy Grinch and goodness knows how many Christmas decorations we will put up this year. I’ve never had autumn decorations before but anything that makes you smile is worth investing in.  I know that for many a healing hug would help enormously right now and sadly that’s something I cannot give you. However know my arms are wrapped around you and I’m holding your hand, while I’m strong let me look after you and together we will get through this. Just continue to be you, continue to say how you feel without judgement, keep talking , keep going and always be kind. 

“I can’t believe it’s been a year” they say. ( I can I’ve lived it 💙)

 The most common phrase at the moment, “I can’t believe it’s been a year.” Well I can as it’s been one of the strangest and unsettling times of my existence. That was before covid-19 joined us, showing me once again the power of a virus to destroy life and change how I live. Again a time of uncertainty, change and adapting but this time I’m not alone. I think knowing what to say to someone when a loved one has died or even at this one year stage is hard. Personally for me the person that ignores you is the hardest to deal with, someone who gives it an awkward go is much better received. It’s a difficult thing to get right and I’m difficult ! I don’t really like “I’m sorry for your loss” but I appreciate the sentiment. I didn’t carelessly lose Warren he died, maybe I’m too literal in my thinking. I also don’t need anyone to feel sorry for me, gosh I’m ungrateful aren’t I . I just think I’m honest actually. If you don’t say how things make you feel nothing will change. I think I’ll be mindful of what I say to a grieving person in the future, although I’ll probably struggle to say something meaningful. 

        Back to the pending one year anniversary of Warren’s death. I’m lucky as I have been left with a wonderful amount of good memories of my relationship with Warren. Thanks to Facebook the photographs have threaded themselves through the year. However seeing all we had has also made the loss feel greater as there is no future us. I wanted this year to be full of new memories as I know Warren would want me to enjoy life and make plans. I made loads of wonderful plans but sadly they never happened. My year of doing 50 things for my 50th stopped at 25, recently I adapted the list but to be honest the moment has now passed. The new plans I’ve made since the easing of lockdown have been simpler but just as precious, everything is special as we are still here. 

         I’m ok, but sometimes I even question that as shouldn’t I be........x,y,z. However this is my grief and alongside it I have to live a meaningful life, existing isn’t for me. I’ve always had the get up, dress up and show up mentality with added lipstick. It’s never failed me. I don’t cry very often, usually because someone has been so kind regarding one of my posts about Warren also sometimes my words catch in my throat and tears threaten. I think the first few days I was awash with tears and the subsequent pre Christmas weeks and Warren’s birthday were also quite water logged at times. The firsts are the hardest thing, I was warned they would be, first Christmas, Warren’s birthday, first New Year, first NT visit and the list goes on and there’s still the first Summer holiday to think about as this years hasn’t happened. So the first anniversary of Warren’s death is another date, this will be tough I’m well aware it will be. I can already start the conversations that are stored in my brain from that day. I can have vivid flash backs, the phone calls, the time line, the “bad news” room, the doctor telling me the news, the nurse who was just so bloody awful at giving the bereavement advise. However I’ll also remember those who were there for me that day, my work ladies especially Rose and Shelley. Warren’s friend and colleague Paul and through him superintendent Andy who came to my house at 9pm and sat with me and said he’d help me organise a memorial service for Warren. In every situation you are reminded to look for those who help you. 

       I have some wonderful people in my life and despite how it appears I’m not always very peopley so feel honoured if I’ve “let you in.” Thank you for letting me talk about Warren, I know talking about death can make people feel awkward but I feel it’s because we don’t talk about it enough. My FB albums documenting my year since Warren’s death have helped me, a safe outlet for sharing, a document of my feelings and somewhere to share happy memories. I know others have found them useful too. Warren will continue to weave his way through my life, so I’ll carry him forward . He was a good, kind man and I know many remember him because of his generosity of spirit. He had so much to give, kindness goes a long way. 

                So on the anniversary of Warren’s death please don’t think of me or feel sad or sorry for me. Instead have a glass or two of your favourite alcoholic beverage and raise your glass to Warren and toast his life, the 47 years he lived not the one year anniversary of his death. He usually had a glass of something in his hand, along with his vape ! 

Nemesis Day Blurred 23/05/2020

Here we are 23rd May 2020 my nemesis day. The day Eloise went from appearing slightly unwell to ventilated with a 30% chance of surviving . The day I heard the words enlarged heart and cardiomyopathy. The day I faced every parents worst nightmare and started living it desperately hoping I’d wake up. The day which has haunted me ever since and given me so many flashbacks and what ifs. Until this year.

                I woke up in the far too early hours of Thursday morning and calculated the date , ahhh yes the 21st of May as Friday is the 22nd Amelia’s birthday. My brain just left it there until I sluggishly got it thinking, if Friday was the 22nd,  that meant Saturday was the 23rd. Tick, tick, tick which meant I had almost got to the 23rd of May and given it absolutely no thought. Usually in the weeks building up to the day I get more thoughtful, more flashbacks, more bad dreams, more unsettled and therefore the need for additional selfcare kicks in. The retreating to my bedroom, candle lit baths, leisurely walks , gym sessions, swimming, also the insomnia creeps in and the nightmares start up, but not this year. I guess this whole lockdown has been about selfcare but all I’ve needed is my hour or two of reading time and a few tea lights lit some evenings. I’ve rarely left the house during lockdown, not even bothering to go for a walk. Each year things have got easier I stopped crying on this day 4 years ago and that was a huge milestone ! I have just read my Facebook post from last year and I was still having intense recall of this day and it was difficult. My mind flooded with the conversations I had and heard on that day and visualising all the rooms I spent time in. This year yes I can bring all of that into focus but it hasn’t crept up on me I can choose to draw it out or not.

       I think this year we are all fighting the same fear, the same enemy Covid-19 and yes Eloise is extremely vulnerable to the virus but most of us have someone we love in the vulnerable category, so this time we are all in the same storm. I know we are all in our own boats and we will be feeling this crisis in different ways but we are all at sea together. Strangely the leaking pipe caused me far more anxiety than the virus ! I hate broken things. I have been isolated both physically and mentally before. However this time around isolation is different as we have social media and many more ways to stay in touch. When Eloise was ill I was very isolated and lonely because of her diagnosis and prognosis so I just got on with it. I probably bottled far too much in until I started writing this blog 6 years ago. Then I created a safe outlet for my feelings. I’ve not written much in here recently as I’ve not needed to. I’ve found it easier to use Facebook as a way of expressing my grief since Warren’s death. Today it is 9 months since Warren died. So much has changed in the past year, it’s been difficult, challenging, sad,  exhausting, but with so much to be grateful for. It’s weird to think a pandemic has made my grief easier, I’ve had no flashbacks so far which is good going. I know there is still time but I feel hopeful. I think the two months I’ve had off of work have helped me. I thought it would be awful with too much time to over think and grieve for Warren but it happened at the right time. I was emotionally exhausted but I couldn’t really see it or get off the wheel of life. My mind has now had a holiday and I feel refreshed. I’ve not felt sad, low or depressed , I’ve not cried or felt alone, just some tension has left my body and my mind is more settled. I’ve let what I cannot control regarding Warren’s death go. My days have been filled with simple pleasures, time with my family, reading and far too much cake. I’ve not done any video calls, or Zoom or anything of that nature and that too was the right decision for me. 

        So here I am on the 23rd May, 18 years on with my Warrior maiden Eloise and another virus is causing fear, disruption, uncertainty and grief to so many.  I wonder how many people will now realise what is truly important in life, health and happiness and spending time with those we love. It really is that simple, it’s sad a virus had to remind us. Our lives were changed forever 18 years ago by a simple childhood virus and no I would never have chosen that to happen but it did and we have had to make every day of life count. I hope the lessons learnt from this period of time stay with us longer than the days we said we’d #bekind . People matter not things and the key workers truly have been heroes. 

              

Isolated

Isolated

Just thought I’d write a few things down regarding Covid-19 and the impact it’s having on me and my family. It’s possibly different to how you think I maybe feeling. 

           For the last few years since her 2 rejection episodes in 2013 we’ve pretty much been able to forget Eloise has had a heart transplant unless she’s at an outpatients clinic, having an angiogram, having blood tests or I’m trying to get her medical travel insurance. That’s the way we like it, please never take normal life for granted it’s what so many of us crave. The transplant world isn’t somewhere we chose to visit and while I’m happy to run a Heart Transplant support group I found when Eloise was unwell in 2013 I wanted to deal with what was happening by not posting in the group. I wanted to deal with what I was going through pretty much on my own as that was easier for me. Otherwise I’d have to support all the people who were worrying on our behalf, I didn’t have that extra energy. However I’m very happy to have found like minded (transplant) friends along the way. People who I’d have clicked with anyway as they are my kind ! In that way we are no longer isolated. 

      To me Eloise is special and she amazes me everyday with her attitude and resilience as well as her way of dealing with so many things. I also have three other amazing children with equally as important qualities and I’m so proud of them all. 

     So back to this virus, it’s making something I push to the back of my mind be right in focus. I can’t get away from it. I’m not one for hand sanitiser, or someone who worries about common infections. I’ve let Eloise do everything her siblings have done without scrubbing her down etc, just a normal grubby childhood of dirt and worms. Yet Eloise is vulnerable to this infection. Eloise is immunocompromised. Eloise has one of those underlying health conditions. Eloise is in a at risk group.  No one knows how someone with a lowered immunity post organ transplant will be if they catch covid -19 and I guess it’s best not to find out. So Eloise has stopped going to university. She was back at nursery 3 months post transplant and has done all the stages of schooling with her peers and now I’ve told her she’s different and it’s best she stays home. That’s what I’m struggling with but I know that I’m doing the right thing so I don’t need convincing but that doesn’t mean it makes acceptance any easier. 

       I just want normal back so I guess that’s just asking people who don’t have vulnerable family members to think of families like mine. To not just have the selfish well I’m ok attitude, to not judge those who are worried, to not take away the supplies and medication from those who need it more than you. How can we have gone so quickly from “Be Kind” to screw this every man for himself? How desperately sad.

       So please don’t think Eloise is in lock down because I’m scared, she’s actually currently roller skating around the park. She’s going to be mainly at home because it’s possible. Her university has been amazing, the technology is in place for lectures to be recorded along with all the slides, some lectures can be seen in real time and Eloise can join in ! She can also use Skype, the joys of Eloise being a tech and computer geek. We can still go outside to open places which is what Eloise prefers anyway. If I felt the restrictions were detrimental to her mental health I’d have to reconsider but she doesn’t get cabin fever like I do. At the moment the rest of the family will carry on as normal but we will continue to monitor the situation and take guidance from the transplant experts. I know I’m known for being laid back and that’s not particularly changed here, you have to consider that Eloise is now 19 years old, this is her life and her decisions to make.  I’m just here to support her and make her choices happen.