Is it ok to be ok? Asking for a friend.........

Grief journey summary nearly four months on from Warren dying. 

The frequently asked questions now Warren has been dead for nearly 4 months. “How are you?” or “Are you doing ok?”  To which I feel my reply “yes I’m doing ok thank you .” Isn’t what those asking expect to hear. I’m then starred at as if they are waiting for me to add depth to it by saying “actually no I’m not ok and I’m struggling, blah, blah......” I think it’s best not to analyse my behaviour or compare it with anyone else’s . What is normal ? I’m the only one who is in my position of losing my partner Warren, I doubt he had the energy to have another woman in the wings bless him ! Please just try and accept where I am right now. I may not always be ok, I’m not stupid and I do remember learning the five stages of grief by Kübler Ross . I’m prepared to bounce around the stages like the metallic ball in a pinball machine. Right now the anger is a lot loss and I’m accepting that Warren is dead. To be honest on revisiting the stages of grief according to their model, I think I’ll hopefully miss out the depression stage. I’ve done the other four though, bargaining, denial, anger and acceptance.

        Please don’t think I’m acting in this way because I didn’t care about Warren as that’s not bloody true. I could cry, scream, stay in bed, not open the curtains, isolate myself, not get dressed, stay away from work but none of those things will bring Warren back and they aren’t right for me. Remember I’m talking about me and my experience of grief not judging anyone else. If I did the things I listed I’d lose myself as well as Warren and that doesn’t make sense to me. I feel I need to do more good things, more that makes me happy with the good people I have with me in life. Warren would want that, we had two or three days a week of shared time, but we also had our own lives, our own friends and things we enjoyed doing independently of each other. That’s still around me, a frame work to build on. I’m just processing my grief in a way that’s helpful for me. It’s how I cope with the grief I already carry around. Grief isn’t just something the bereaved feel, I’ve lived with grief for decades now and you can still live a happy fulfilled life with her as a tiny companion ! 

          I’m struggling to write this post but I’m also struggling with not getting it written so I apologise that it’s a bit jumbled. I’ll try and continue ! When Warren died part of my life ended too. I’m no longer in a partnership, after five years I’m single again but the rest of my life continues and it’s a good life because I’ve worked hard at making it that way. I’m now just trying to find ways of treasuring what I had with Warren, just because he’s no longer physically here doesn’t mean I can’t talk about him with you. Looking at photographs and sharing our memories with you helps me. I love talking about him but it’s extra special talking to those of you who knew him well. I’m keep boring you all, I’ll keep checking Facebook memories, I’ll keep smiling at the new stories and continue to enjoy remembering a few of the Warren classic moments. Warren is still here in my heart and in my head. He’s gone physically but he left me a legacy and a checked shirt.

                Grief isn’t just an evil thing there to cause me pain, it also teaches me what I value, what I need and who is by my side . It shows me how much I cared about Warren and the depth of my love for my Irish  . This is a good quote Mark Nepo “ The pain was necessary to know the truth, but we don’t have to keep the pain alive to keep the truth alive.” I’ll probably cry soon as it’s the evening and I’m staring ahead at the large photo of Warren on my bedroom wall still covered in lobster lights. My bedside companion is next to me a gigantic lobster who is a good non snoring hug buddy. Life is not the same and it never will be again and that’s going to have to be ok. I am ok. 

Miss you 💙 sweet dreams xxx 

Time After Time

Time is the most precious thing we have,sometimes I like to be generous with my time and other times I hoard my time so I can look after myself. I think the hoarding of time has increased along with my years of age. Time has become more precious so I no longer waste it on people or activities that make me feel that time is being stolen from me and there’s no chance of it being returned. 

         Once time passes it is not renewable, it’s gone forever so it’s more valuable than money as you can make more money. When I was married I was time poor with my husband despite us having the money to do so much. With Warren I was rich in time as we made time for each other and our wonderful adventures, the memories I’ve been left with are precious. We can all beg for more time but that’s not possible, we just have to use the amount of time we are given more wisely. The clock is always ticking in the background.

                  Like everyone else I’ve wasted time, especially when I was younger, giving the wrong people too many chances and not walking away. Admittedly, this wasted time was due partly to the fact that, when you’re young, you don’t necessarily know what you value or what will bring benefit to you long term. But early in your life, much like having a lot of money in the bank, it doesn’t seem to matter because you, at that point, have plenty of time to spend. This year I’ve stopped giving second, third, fourth chances...... I guess when you reach a certain age you start looking back at your life and see the costs of your past relationships and things you did. 

               There’s that saying isn’t there “Do not put off for tomorrow what you can do today.” Tomorrow’s never promised to any of us. We always think we have an endless amount of time, and that it won't run out! So we put things off, and the truth is, time isn't going to wait for us, and if we put off what we can do now, then life will get in the way.  We can direct our own life but not the lives of others, so if we are planning our life around friends, or family, we need to think about what if?  What if they get sick or die, that’s what happened to Warren who saw that coming ? I’m so glad we always made the most of our time together, rarely a dull unplanned moment ! I think Warren’s death has made me plan more catch ups with friends, I’ve seen so many of my friends in the last 11 weeks and it’s been wonderful seeing them not just a few typed social media messages. Of course I value all the messages my friends have taken the time to write as well but spending quality time with the right people is priceless. 

Time became so much more important after Eloise’s transplant as the survival statistics I was given seemed to say here you go expect 5-10 years of life. I know they have to make you understand that transplant isn’t a cure and that transplanted hearts don’t always work forever but I got fixated on the number of years. Initially in a why bother kind of way as I felt Eloise’s death was imminent but thankfully I got into the quality of time over quantity mindset and life carried on. It carried on but with more colour, more trips out, more making of memories and lots more photographs. I’m glad that 5 years ago Warren got to join in as I feel we never wasted our time together.  

       Of course we still have to spend time doing things we’d rather not do and sometimes spend time with people who don’t interest us, that’s life and you can’t stop some of the time wasting activities like standing in a queue, sitting in traffic, attending parents evening, going to lectures etc. You just have to look after and protect the rest of your time. I guess just know what/who you value and prioritise. Make deliberate choices about how you spend and use your time. Then the tough bit , but believe me if you put yourself first it gets easier, discriminate against people and activities who waste your time. You know what’s coming next......life’s too bloody short !!!! Spend time wisely as to exist without living is not to live at all. 

After You

After You 💙
It’s been two months since I wrote anything and ironically that was my pre 50th birthday post “Age is Just a Number” I reposted it this week on my Facebook as I felt it deserved a rerun because of Warren’s death. I still stand by my words especially these “Age means another year of life that you have been blessed with, growing old is a privilege. I wouldn’t want the alternative to ageing which is not living another year.” When I wrote those words I would have been thinking of my transplanted family, my friends living with cancer and other life limiting conditions. Not Warren, who will now always be 47.
           Warren’s death has been such a huge shock and maybe I’ll never make sense of it. The nurse in me is really trying to work out the medical side of things. What did we miss ? How can a seemingly healthy man have such extensive coronary artery disease that he dies suddenly of a massive heart attack and two cardiac arrests. It’s hard to let it go but I won’t ever get any answers to my questions. I’m grateful that he tried to contact me and got Toby to do so instead. I’m glad he didn’t suffer any prolonged pain that he lost consciousness and was incubated. I also know if he had survived such a prolonged 30 minute out of hospital cardiac arrest that he would have suffered extensive brain damage, I wouldn’t have wanted that for him. Even once resuscitated his heart wasn’t strong enough to pump on its own and it still needed mechanical compressions. This is a selfish one but I’m so glad he didn’t die on holiday, that we got to enjoy and make memories on our last family trip. I’ll try not to imagine how awful that would have been. I have to take the positives out of the situation I’ve been dealt with. I don’t think many people could have survived that, Warren tried his best to fight but not all battles can be won. I told him he could go if he was tired and I told Eloise exactly the same when she was dying. I needed them both to know I loved them, wanted them with me but understood if it was too much for them to stay.

  In time the hours I stayed at the hospital waiting for news in the relatives room will join my other difficult memories that I’ve had in other such hospital rooms over the years safely boxed away in my head. Time never erases those conversations, so please if you are giving bad news get it right. I can recall all the bad news conversations I’ve had as if they happened yesterday, so choose your words carefully, they do have a huge impact. I cannot fault the emergency consultant, she was extremely good, very caring and helpful. She took down my details and that is why I received that lovely card and seeds from the ward/theatre where Warren died. Unfortunately the nurse who gave the bereavement advise wasn’t so great, maybe she was nervous ? She managed to make a visit to the mortuary sound like the best party ever , such an invite. I wanted to laugh !
                                  So it’s now over seven weeks since Warren died and I feel he’s missed so much, so many memories have been made that he would have featured in. So while there’s been this thread of sadness wrapping itself into every day the other threads have shined brightly. My shared life with Warren has ended abruptly but I’m still alive and living myself. I wonder what people expect me to be like right now, do you think I should spend each day in a heap, crying and unable to function? As I can keep going and my normal life is continuing that doesn’t mean my grief is any less it just means I can live with it. It’s just the way I am now because of what I’ve already experienced. I would never describe what has happened as “shitty or crappy” I absolutely hate those words when used in this context. My life isn’t excrement it’s so much more even without my Irish. I’m trying to think of an alternative word and failing as my life is now different going forward because Warren’s not by my side but it’s not without happiness. He would hate me to be miserable and sad, so I’m grasping every opportunity to make memories with my beautiful family and my wonderful friends. I urge you to do the same, safe guard your life by creating memories and I recommend taking a photograph or two.

                      This Winter I’m going to get organised and make our photographic memories into photo books and scrap books. I already love the book of photos I quickly put together for Warren’s memorial service. It’s nice flicking through actual pages rather than scrolling through online albums. I made one a few years back of our trip to Ireland visiting Warren’s place of birth, I may find it later and have a look.
                    I hope Warren understands why I cancelled the holiday at the lodge, I just can’t imagine being there without him. He loved our February mini breaks we had four of them together all in Somerset. The hot tub was always so relaxing, I’ll miss it but I’d miss Warren being there so much more. Cancelling it made me cry so much on Friday and yesterday it broke my heart but I think I’ve done the right thing for myself. Crying again now just thinking about it, maybe one day we will return , I hope.

I’ve probably got so much more I can say but I can write every day if I need to on Facebook, I just wanted to write this blog post this morning. When I know it’s needed I have to get the words down in here, this will always be one of my best forms of therapy. Once I’ve written the post it’s like it’s already been said out loud so afterwards talking about my feelings seems easier. Is that crazy? Maybe I’ve helped others along the way, grief can be quite a lonely thing and obviously it’s a personal experience too but I’m happy to share my journey with you. I need to be understood and I know it’s ok not to be ok. If I say I’m fine, I am. So there’s no need to push for more as these days you’re going to fully know how I am.........💙
Warren I love you 💙 I miss you 💙 sweet dreams xxxx

Note to self - Age is just a Number

Does getting older bother you?

In terms of the number of years old I am no, I’m writing this because I’m 49 and 11 mths and in my 50th year. The number doesn’t bother me, you are only as old as you feel and all that. Age is just a number.....I do think getting older is a separate thing to how old you are in terms of date of birth. 

For years I've heard women balk at saying their age, lie about their age, and joke about being "forever 29” or even 21 again ! I never got it. I mean, age means another year of life that you have been blessed with, growing old is a privilege. I wouldn't want the alternative to aging, which is not living another year. Whether I feel this differently because of being a nurse and seeing people die far too soon! I have also lost friends the same age as me to cancer and suicide. Perhaps it is from being in the transplant world where each day is precious and there is such uncertainty about quantity of life post transplantation. Or this is just me.

      

I do think it strange that I’ll soon be half a century old , that sounds so different to me than being 50. Also unless I live until I’m 100 I now have fewer days in front of me than behind, that’s a strange thought. 

So I’ve been thinking a few things over and I’ll share them with you. Wisdom and experience come at a price, I feel like I’ve been through a hell of a lot in the last few years actually decades so with that in mind, I would rather be the age I am now than going through my 20s and 30s again, still trying to figure out life ! Obviously the horrors I went through with Eloise happened in my early 30’s and nearer the end of them I had my missed miscarriage and thankfully two years after that I had Henry. So many highs and lows. I do feel in my 40’s I started to become myself. It’s 8 years since my marriage broke down and I built myself up. That was a turning point for me, my mind set changed, I had to look strong and in control even if I wasn’t . I had to make sure my children felt secure and they weren’t damaged by what was unfolding around them. I had to keep things normal. Also during this last decade I’ve become more open regarding how I feel, I’ve shared my inner feelings and what I’ve experienced. It’s so much easier now I no longer say “I’m fine.” Why should I hide my feelings ? I hope also by sharing my experiences I’ve helped others along the way. I like to remain positive and hopeful. 

There is an urgency to living wisely and well. There is so much I want to do and I totally appreciate how precious time is. I love the saying “living my best life” it’s true, that’s what I like to do. I love to pack lots of lovely things into my schedule. Spending time with those I love just doing things we enjoy together. Perhaps I should stay at home moving dust around or tidying cupboards but if I’m offered the opportunity to do something that will give me a lasting memory I’m out of here ! I guess like many of us I’m very aware that I need to lose weight, my poor joints don’t need anymore pressure on them, I need to put my health needs before my cake needs, bugger ! Thankfully I do love the exercise thing I do at the gym, just need to concentrate on the weights not Homes Under the Hammer ! Swimming is a great form of relaxation so that’s a double plus and aqua aerobics is great exercise, it’s fun and I love catching up with the ladies each week. If only I got the calorie balance right I wouldn’t have so many pounds to lose, a life far too well lived. Incidentally I’m writing a list of 50 things to do for my birthday and their seems to be quite a lot of cake involvement ! So I’ll never be slim, just aiming for slightly less fat and fit !

Age brings a greater appreciation for life and health. I suppose this is connected to the above. At 49+ I am now witnessing what others my age and older experience. Just the realization that my body can't (or doesn't want to) move as well. Also it’s incredibly hard to see loved ones age and go through terrible illness or live with debilitating long term conditions. Then there is the prospect of one day losing my parents, this is just a hideous thought. I know many of my friends have already lost a parent, so I’m extremely lucky to have mine, especially as my dad has battled with many life threatening conditions and won. 

I’ve also heard that turning 50 means you are entering the age of true happiness, comfortable and content with your lot. I’ll happily take that ! I know I’m really lucky the mortgage is paid off so financially I’ll be ok when I sell up and down size. The greedy dream is to have two small properties one in Bristol a second in Devon, we shall see how that unfolds. By the time it’s my birthday I’ll have two children at University , one at sixth form and one in their last year of juniors. They’re growing up and spreading their wings. In this coming century even my youngest child will become an adult. Presently I’m thinking of working until I’m 60 then retiring, I’ve never been career driven but I’m still happy with my nursing achievements and I’m proud of the 30 years I’ve given the nhs so far. I’m enjoying working part time, perhaps I should work more hours but time is more important to me than money. I like being able to spend quality time with family and friends.

Age does bring confidence, even though I’m not 100% satisfied with how I look body shape wise I’m not worried about how others see me. I’m the critic and the judge but I don’t think about other people’s opinions on how I look. I’m the only one who controls how I look, if I need to lose a few pounds, stones only I can do it. I’m the one who applies the make up and chooses the clothes. This is very liberating and I wish I’d reached this earlier in life. It’s sad that people are body shamed and that we see air brushed images in the media. It’s so important to love yourself , I’m an advocate of self care. If you don’t look after yourself you have no reserves for looking after anyone else. I used to let people take too much from me, then I learnt another very important life lesson The Art of Saying NO ! Have liberating , just saying no, no excuses, no guilt, just appreciating that I’m important and I have a choice. 

     So a new decade is waiting for me to fill it with loveliness, spending time with those I love, visiting places that make me happy, buying far too many dresses, eating too much cake and letting my Jellycat soft toy collection grow. So what is there not to like? I know I’ll never age inside even if the reflection in the mirror says otherwise. 

    50 I’m ready for you ❤️

A most precious gift 💝

17 years of gifted Life 

Eloise 

17 years of life, of living not merely existing. If you’re given the most precious gift of all a second chance of LIFE why waste it ? From toddler, to pre-school, through key stages 1, 2, 3 and 4 , to six form college to adulthood. Moving forward through life smashing all obstacles that have been put in her way. That’s my Eloise, my daughter, my inspiration , my precious, my everything. 

            How different it could have been for me waking up on the 10th June 2002 if Eloise hadn’t received her heart transplant.  Knowing she’d be going on ecmo that day and the complications that could have , watching time run out as you could only stay on ecmo for a very short time all those years back. I never imagined I’d take my daughter back to Bristol alive, it’s hard to admit that . Now I cling onto hope and actively encourage others to do so but at that period in my life I had no hope. All options available to Eloise filled me with fear. I still have that one M&S baby grow that I packed, a white one with little castles and trees on it in pastel shades. The baby grow for her to be dressed in when she died, I took no other clothes for her. 

             The 9th June 2002 another day that I remember with such clarity, whole conversations, room layouts, frantic activity in the unit, phones ringing, hesitant looks, a buzz of anticipation and a pale and dying Eloise in a full sized hospital bed. We went out for a few hours into Newcastle to get away from the beeping machines, to touch normality (you never do, you just want to scream at people ) I remember the fire service advert on the side of our bus. The picture was of a burning wheelie bin,  the words were “Do you know what your child’s doing tonight?”  I guess I had absolutely no idea........

       Perhaps it really is for the best that we have no idea what’s around the corner as we’d be too scared to live for the day. Nothing is promised , the only guarantee is we won’t get out of here alive. Even when we decided to sign the consent form for Eloise’s transplant and accept the advise of her consultant regarding her being the worlds oldest ABO mismatch recipient Eloise had other ideas.  An additional amount of sedation was enough to make her arrest, one way to get everyone running, making the machines go crazy and adding another flashback to my scarred brain ! Someone uttered the words “are you alright?” What do you say to that ? “Great view of all the action thank you .”  Actually you don’t say anything as your husband does it impolitely for you ! 

         You know the story, both halves of it now as I’ve shared Zara’s story with you, you’ve seen her mum Rebecca, you’ve watched her and read her words. She’s such a brave, generous soul who continues to promote organ donation awareness and chairs two hospital committees. Zara will never be forgotten, she travels through life with Eloise. This story will continue to unfold and we are soon turning to a fresh page as another exciting chapter is about to begin........university. Eloise already has the results of the two Btec diplomas she took, she has two distinctions so she has enough UKAS points to study a four year degree in computing. If she gets an E or above in A’level geography she can do a 3 year course. I’m so proud of her, she has her struggles but overcomes them all without complaint. Eloise is a shining example that organ donation works ⭐️

Thinking of Zara and her family xxxx

Time heals , they say

Time heals they say.......

Back story - Tues 22nd May 2002 my second daughter Eloise was a fit and well 21mth old in nursery for the day. Wednesday 23rd May she was in intensive care ventilated with a barely functioning heart because a virus (later to be confirmed as hand, foot and mouth) had caused myocarditis and dilated cardiomyopathy, she was fighting for her life.

I don’t actively feel pain because of the 23rd of May 2002, but the memories, when they do cross my mind, evoke a myriad of emotions. I have hoped for indifference, to be able to let go of past hurts. I’ve found that the hurt shifts, it bends and lays dormant…but the hurt stays, just in a different way. My pain is from my memories and no amount of therapy will erase them.

Time is interesting. Time can be my greatest friend, and my enemy. 17 years have  passed but my mind is still triggered regardless of time. Time has brought me so much happiness , my beautiful children, my friends, all the wonderful things I get to see and experience. I still grieve for the life I thought I’d have with Eloise,  I’m not consumed by it but it remains. Just yesterday I said I was fed up with chasing hospitals, GPS, nurses for appointments, blood test results, who is doing what with the blood samples that were taken. I want someone else to do it but there is just me. I get tired of it, tired of a system that never communicates within itself , tired of everything being so complicated, tired of explaining, tired of assumptions , just generally fucked off ! Obviously this is then followed up with my old favourite guilt ! Time hasn’t erased those feelings either, has time run out? 

Time has taught me a few lessons over the past 17 years, I never thought I’d be sat here writing this with Eloise upstairs on her computer an 18 year old student currently doing her A’levels . In the beginning I never saw a future for her, I didn’t see her surviving the night she was that ill. Now we know she’ll be starting a degree course in September just like her peers. You know I love a musical so I guess time has shown me that “the show must go on.” I had to pick myself up when all I wanted to do was lie there , silent, numb, broken and alone.  

 I’ve lost count of the number of people who’ve told me that time is a great healer. I know I’ve avoided using the phrase especially to my bereaved friends, the pain of losing someone will never heal completely, in my opinion. 17 years have passed and I’ve not healed, the pain is still there but it is less. However when I’m triggered the flashbacks are vivid, the conversations from that day word perfect, the dragging fear , the suffocating feeling, life changed forever. I’m scarred , the wound will remain now. My whole life plan changed with the results of Eloise’s chest X-ray and subsequent echo scan. Originally I was locked into my sadness, I found it hard to go on with my life but I did. I put on a bloody good show, no one would have known how traumatised I was. My fault I didn’t want to talk, so I didn’t want anyone to ask if I was ok, I didn’t want to upset anyone else as I found it just meant that I had to support them emotionally too, I became the strong one. Inside I continue to grieve to this very day, fate can be an absolute bitch ! 

I do look after my wound, with my thoughts, my inner will and by keeping myself in the present moment as much as possible. By living for the day I don’t think too much about the past as I have never wanted this event to define my life, it changed it but it doesn’t own it. Today I’ll be honest my wound will give me pain, it will haunt me like a movie on replay.  It’s just a day and it will pass. So while time hasn’t been a great healer for me, I have learnt that time is now. 

The Other Life

The other life.

May is here again, a beautiful month full of hope for sunny days and blue skies. Yet it’s a month which holds memories of my darkest days, my black days, the day my life changed forever. At the time I thought these dark days had settled in forever. I didn’t think I could be happy again or that life would return to my version of normal. Of course like right now my sunny happy days can have a shadow cast over them. I’m being taken back to those awful days as the anniversary of when my world collapsed is drawing nearer. I didn’t know for many, many years after the event that what I was feeling right now was due to post traumatic stress disorder. I feel myself pulling back a little, lost in thought, recalling , revisiting, asking why, tears aren’t far away and my heart keeps racing. I’ll be ok, the days will keep coming and then the ones I dread will pass. I’ll distract myself, I’ll reassure, I’ll carry on, I’ll go through the motions but during the night the hours will be longer, the memories more focused , the pain more intense but Morning will come again it always does. 

     This has been my life now for 17 years, the other life is a distant memory really.  I try to recall it. Married mother of two little girls, working part time as a nurse and a husband who worked away all week. Was I just going through the motions every day, week, month. We’d just moved from a flat into a house the month before Eloise was taken ill.  What would have happened if Eloise hadn’t had myocarditis? Where would we be?  Would she have been leaving home in September to go to university? Would I have had any other further children? Would I be divorced ? Was I happy?  Unanswered questions that will remain that way.

            When people say if they went back in time they’d not change a thing is that true? I find this difficult as of course I would love Eloise to have her own healthy heart inside her but this transplant journey has taught me so much. It’s taught me to enjoy every day, to make each day happy, to make memories, to say yes to opportunities , to take nothing for granted, it’s taught me who my friends are, it’s shown me strangers can give you the most precious gift in the world. It’s shown how strong I can be, how fiercely I can fight for my child. It’s shown my passion, it’s shown me determination. I have a purpose. So many important life lessons, so I live differently , I cope differently using the scale of I nearly lost a child so I can cope with x, y, z.  

          Tough things have been learnt too I know how fragile life is, I grieve for myself, for my daughter, for an uncomplicated life . I grieve for losing my ignorance , I didn’t really understand organ donation, didn’t really think that time would run out before a donor was found. I’m terrified too, scared of something happening to Eloise, anxious for every appointment, looking for reassurance that her donor heart remains perfectly healthy. During my darkest days I can’t stop myself thinking about what if she wasn’t here, it tries to destroy me but I don’t let it. I run (not literally obviously ! ) back to the present and embrace the day I’m living. 

      These days I rarely return to the darkest of times, the shadows are fleeting and I can deal with them.  The life I’m living now maybe different than the one I was experiencing 17 years ago. The light shines differently now, it highlights and enhances what is important in life. It illuminates who and what is most important in my World. I have adapted to this new light. 

I’m not here

I'm not here. I’ve disconnected a bit today and I’ve left the place where I usually hang out. My safe place. I am struggling to get back into that room, back into the moment. I’ve been shoved out and thrown back into the past with the future also hurtling around in my head. It’s not that I don’t normally notice what’s going on around me, I really do but I don’t always feel it so intensely.  I tend to deal with one thing at a time, acknowledging, observing and accepting each sensation, each experience, thought and feeling as it arises, from moment to moment. But sometimes too much happens at once and I can’t process it all and it becomes consuming . That’s where I am right now struggling, struggling to make sense of a few things. 

        I’m finding myself back in different rooms, dark rooms with difficult memories. I can face these rooms normally but today I don’t really want to. Swirling rooms, think of the Wizard of Oz tornado with the houses flying around and that’s what these rooms are like. The room in A/E where Eloise was diagnosed, the bad news room on PICU at Bristol Childrens Hospital, the cubicle where she lay cold like death, the parents room, the small room outside cardiac intensive care at the Freeman, the anaesthetic room, Ladybird Ward, Ward 32, Cardiac Day Unit, Walrus Ward........Hospital rooms merging into one. Loud conversations, bad news, diagnoses, the look, the frown, the knowledge that you’re not going to like what you’re being told, the gut feeling, the stress, the sickness, the pain, the insomnia, the fear, the chill, the whispered conversations, the blips, the bleeps, the alarms, the dread......This is a chaotic list because that’s how it feels, you feel all of these things. Nothing is ordered, nothing is normal or taken for granted. I keep sighing, breathing in deeply and exhaling slowly. Everything is taking a lot of effort, but that’s ok. 

           This emotion I’m feeling isn’t really mine, yes I’ve returned to my difficult place but it’s because I’m thinking of members of my transplant family. I know I’m overly sensitive and it’s a blessing usually . I’ll be honest though sometimes it’s a struggle as I naturally want to fix people and their problems. I’m an emotional empath and I’ve known that for quite some time. So even though I’m feeling sad , I do realise this sadness isn’t my own, but my body is aching today and my head is foggy. I actually feel a little guilty for feeling this and saying it. I know these feelings will pass for me and I hope my friends will be ok too, but I know we will never be the same again. 

             

Our transplant world is a unique one, you seek out others who are in the same situation as only they understand the road you’re on. Sometimes you wish you could 100% forget about transplant life but you can’t the little black cloud follows you, so you have to make the rest of the sky brighter. Bad news and sad news is shared in our community as well as the best news. We invest in each other emotionally , a lot of the people will remain strangers, just names that pop up in our support groups. Others will become so much more, you love them and care about what they’re going through. Then you hear or read the worst news, that one of your transplant friends has lost their fight. You cry for them, for their loved ones, you cry for yourself and for the person you love whose had a transplant. You reach out to others and you all share your grief and then your memories of better days spent with the person who has died. This is how it is, we’ve lost so many friends over the last 16 years and they’ve all died too young. You wish that life post heart transplant was easy, you wish you were guaranteed a long life, to live to old age but nothing is promised not even an extra day. Every day is fought for, some don’t even get to receive a transplant, some die in surgery or immediately afterwards, some get months, others years, we all hope for decades. When you or your loved one is dying though and a donor heart becomes available you gamble , you take that one chance, that potential life line. As our dear friend Stacie said #LifeisWorththeFight 💔