Another Year ❤️

Another year

                                     

On the 10th June 2017 we celebrated another precious year of life for Eloise. Another year with my miracle. Another year that wasn’t promised. Another year against the odds. She’d made it. Also in June we celebrated Eloise finishing her secondary school education and attending her school prom. She looked gorgeous while still retaining her quirky style. I never thought I'd see here complete her Primary education so for her to complete her Secondary education fills me with joy. 

     In July we went on holiday to Turkey again for the umpteenth time but it’s Eloise’s favourite place and that’s important. Making memories, taking too many photos, is that even possible ? 

    In August we celebrated again this time Eloise’s GCSE results , that kid with the horrific attendance did well. She passed 8 of her exams getting 7 B’s and 1 C , this meant she was excepted into 6th form to take her A’levels. Despite having so much time off she always caught up with her work and was a conscientious student. 

    September meant more cake as Eloise turned 17 , how did that happen. Once it seemed impossible that Eloise would reach this age but here she is starting college to take three A’levels.

    October brought the end of an era as Eloise said goodbye to Bristol Children’s hospital, the wonderful team of cardio techs and her consultant Dr Martin. Time to transition to adult services. Another big step but forward so that’s the way we like it. It’s hard saying goodbye to people who are so important as without their amazing care from the onset of Eloise’s illness I wouldn’t be writing this post. 

   December another Christmas and New Year, precious memories made, family times and days that were never promised. 

    The months mingle and blur together, our week in a lodge in Somerset, our hot tub chats, Eloise starting her first job helping out at Zebras After School Club, her geography field trip, meeting other young people on a BHF meet up, beautiful memories, bonus days. Days that I never take for granted, days I like to fill with happiness. 

    In April we had the best day receiving the priceless news that Eloise’s heart looks healthy and has no signs of coronary artery disease. She was so brave lying there having that angiogram done awake. She’s such a strong and brave creature. Soon she will be leaving Great Ormond Street Hospital too so it really is the end of an era. 

          Today she told me how impressed her IT teacher is with her work and report on spread sheets, she went above and beyond with her homework and took it to another level. He's the spread sheet expert but used Eloise's work as an example. She's really found her niche and subjects she is passionate about. Hopefully this will later lead into an apprenticeship for her. 

    So here we are back full circle to the 9th of June, the day I was told a potential donor had been found for Eloise. How can you be excited and happy when you know that somewhere a baby has died ? Yet totally appreciating this is the only chance your child has of surviving. You're being given hope tied up in a huge knot of sadness. Also at this point I didn't know if Eloise would even survive the surgery, she arrested in front of me at 22.00hrs just before being taken into theatre. Once stable I said goodbye to her before she was taken through into the theatre suite. Nothing at this point was certain and I guess even now we live a life of uncertainty. 

   So as I write this I’m extremely aware that Zara never reached these growing up milestones, never had these experiences. It is such a year of change, starting to go from child to adult.  I only hope Eloise continues to give her donor family comfort. I know that Rebecca loved meeting Eloise for the first time in April. I've heard from Rebecca today, it's strange that both of us have changed recently , she's said in her email "I'm not too bad this year....." I felt like that during Eloise's diagnosis day. Time hasn't healed me but it's shown me how to deal with my feelings. 

      So Today the 9th June is for remembering Zara and then tomorrow the 10th June we will celebrate 16 years of life and living all thanks to Zara's gift. 

                    

     

       

Chasing the clouds away

                    

As you all know on the 23rd May 2002 I experienced a traumatic event. Eloise being so acutely ill on a ventilator in paediatric intensive care, Eloise covered in tubes and wires, cannulas and lines that they've struggled to put into her shut down body. Eloise with little chance of survival. Eloise diagnosed with cardiomyopathy of unknown origin at this point. Life as I knew it ended on that day. That day left me feeling helpless and emotionally out of control. This psychological trauma left me with memories, flash backs, anxiety, but it also left me numb, I felt disconnected from people. It's taken many , many years for me to feel safe and for my pain to lessen. 

                   

The  years since I've been writing this blog have helped me enormously , this has been my self-help strategy and I've let you be my support. What happened to Eloise nearly broke me but it didn't, maybe the pieces of my life are now in a different order but that's ok. Even though I found others going through similar experiences online ;my transplant family; I still felt isolated from the rest of you. 

      As well as the emotional symptoms of shock, guilt, sadness etc I also experienced physical symptoms such as insomnia, being easily startled ( I remain quite jumpy !) and I can often feel agitated when I feel tense. These are no longer constant as time is indeed a great healer, these symptoms are mainly saved up for hospital appointments or specific dates. I know I shall continue to grieve what I lost, I know I'll continue to feel anger, I know if I screw up my eyes and think hard enough I can play back many traumatic conversations in film colour on the back of my eyelids. But this means the harder times are very infrequent now. I know life can change in the blink of an eye, I also know worrying about it won't change the outcome. I can be quite wise on occasion.

    The agitation and insomnia have been helped greatly by that evil known as exercise. I need my gym fix or a gentle swim. It calms me or allows a positive outlet for my anger. It's a good place for me, not a bad addiction either ! I listen to music and focus on myself, I don't give myself time for negativity. This is self care. I try and get between 7-8 hours sleep and I do manage that 95% off the time these days. The "loneliness"  has gone I feel by writing down how I feel I'm letting you all in, I'm no longer isolating myself. This is good, I don't want to sit in a circle and discuss how I'm feeling, I don't want 1-1 with a therapist I want the freedom to write when I need to. I know how to calm myself down, time out in the bathroom, candles, music and a book or just curled up along lost in a book. Books offer great escapes ! 

    I don't need my traumatic memories erased they are part of who I am now. However it's good that they are mainly at rest. I guess it's also about avoiding the triggers with me. So nemesis day I'm ready for you, eyes wide open so that'll stop you delivering any flashbacks !  Let's just have a "normal" day ! 

       

Realisation - a positive change.

Less than an hour ago I was sat in my kitchen looking at my iPad smiling to myself as a wonderful realisation swept over me. I’d forgotten the date, well I’ve been writing the date all day so I know it’s the 14th of May but I hadn’t realised it is the 23rd of May next week. I was sharing a link on my Facebook to the BBC documentary that’s on heart transplantation tonight so I wrote a little piece about my experience with Eloise. It was only then that I realised my nemesis day was so close !
                                          The 23rd of May has haunted me for many years, the day my world came crashing down as my precious Eloise was diagnosed with myocarditis and not expected to survive. The pain has eased over the past few years and I’ve stopped crying ! I never used to get through the day without a session of weeping , usually in private, usually into my pillow. Such a lonely time to be upset. People expect you to get over such events. You’re told or expected not to dwell on the past. You’re told that “time is a great healer” maybe it is but you remain scarred. Yes the event is in the past but I cannot switch off from it completely, it’s not a light switch. I’m sure many of my friends have heard these things or maybe even said them ?  You can’t just get over a trauma like this, you cannot just move on or forget it, you have to live with it and find peace. Life will never be the same again. Having pressure put on you just makes things more difficult, you have to work on your feelings in your own time and only when you are ready.

                              For me writing this blog has really helped, I can be honest, I can express myself, I can “talk” without fear of crying. I can explain how I’m feeling without anyone looking at me. I feel safe in here and writing this is my therapy. I’m talking to you and I feel you understand that what happened to me is important. Currently biting my nails........
             I know I won’t totally get over what happened to Eloise, I cannot forget what I saw, the flashbacks still happen, they are very vivid, imprinted in fine detail in my brain. But I can live with them. They show me what a fighter Eloise is, they show me how far she’s come, they remind me to believe in miracles, they remind me how precious and fragile life is. They are part of me now. My demons are getting tamer and I can let them out of the box in my head when I need to.
                            So 23rd May 2018, I guess I’m more than ready for you. A life changing day but you haven’t broken me yet. 

Winning the Lottery

Monday Night’s thoughts.

“How are you?” 

Me- “ I’m fine, thank you “ said with a beaming smile.

Look closer at that smile it didn’t reach my eyes, my eyes that have felt the prickling of tears that I refused to let out. My anxiety level is pretty high at the moment. Thankfully it’s still being managed, I can hear myself doing the deep breath and sighing thing. I want to run away and escape from my fears for even the briefest of moments. I’m on high alert, I’m prepared to fight and do whatever it takes to get through these next few days. What am I running from ? Reality or just the uncertain part of my reality Eloise’s heart transplant and her over due angiogram. 

         Am I over reacting ? What do you think ? Should I fret before these appointments or just think “what will be, will be”  I’m not stupid I do realise anxiety or no anxiety the outcome of this appointment will be the same. The results will not change and what ever happens I will deal with it. I know I will as past experience has shown me that. Past experience has also taught me to take nothing for granted ! So I’m stuck between a rock and a hard place. 

    So it’s 10.40, I should be asleep but I fear trying to sleep as I know I will lie there having conversations and going through possible scenarios. My panic increases, my mind goes into overdrive . Then I count how much sleep I can potentially get, then I pop to the loo, then I’m thirsty, too hot, too cold , I’m just impossibly restless right now and nighttime is one of my enemies. Im too exhausted physically and mentally to stay awake but I’m too scared to sleep. It’s lonely at night when you’re in the dark. I’m my own inbuilt enemy and I cannot escape from myself, a gagging order for my over active brain please. Perhaps I should try and sleep, tomorrow needs me......

      

  

Tuesday’s musings.

    Sleep, that’s better you came back to me ! Appetite you didn’t falter so I remain fat. I need appetite suppressing anxiety really. Let me now confess to making this trip to Gosh even more stressful. We met Rebecca, Eloise’s donor’s mum for an hour. We’d been emailing and she realised she was at Gosh chairing an organ donation meeting on picu. She asked how we would feel about meeting up, I checked with Eloise and she wanted to. I feel I have to be guided by both of them, this is more about their feelings than mine. I didn’t need to have been nervous, we chatted over coffee the most natural of conversations, it just worked and flowed. I’m so proud of Eloise you know that already but she truly is amazing. We walked away from the meeting and Eloise was happy , she just said I’m connected to that lady because of her daughter’s heart. Rebecca emailed me later, she agreed with how natural it all felt, our first born daughters are both at uni, they sound similar. She then said she liked meeting Eloise, “I see what you mean about her being chilled. How lovely is she?” I’m so glad this meeting went so well. 

      The rest of the afternoon comprised of the usual pre Anglo activity, clerking, obs, swabs, ecg, echo......transition chat, you know the kind of thing now.  Sadly, this is sarcasm the Italian Wing transplant accommodation was full so we had to stay in a hotel. Poor, poor us, a triple room, Wi-fi, TV, tea and coffee and our own bathroom, whoop, whoop. Good soundproofed windows so we didn’t hear any outside noise, win, win . Those that know the Italian wing will appreciate how wonderful it was to have a good nights sleep in a bed without a covering of plastic. Sleep that wasn’t broken by the early recycling of glass bottles. Small pleasures ! 

     We spent a lovely evening meandering around Piccadilly, and Oxford street, the weather was kind so we took our time. I visited Cath Kidstons flagship store, it’s a beauty, so I was happy. We have two more (un)necessary mugs ! Eloise has two pairs of jeans without holes in them. The “last supper” was spent in Ed’s Diner where we ate far too much but hey we had good reason! 

     

                    

       

Wednesday arrived......

So we arrived here on Walrus ward at 7.30 knowing Eloise was the second person going to the Cath lab this morning.  Poor thing had to be cannulated on the ward, three attempts, a big bruise and a tearful Eloise later they got one in. She hates cannulas and they always struggle getting one in. The pregnancy test revealed that I’m not going to be a grandma, it always makes us smile. Eloise rocked the gown and stocking look, and looked a treat in her “ f**king ballerina tights” 

                           

    Eloise eventually went to theatre at 10.40 she was introduced to her nurse who’d stay up the head end ! It was strange leaving her awake to walk into theatre. I’ve felt more emotional walking away previously it was nice to see her smile and get a hug before I left her. The wait for news was agonising, you can’t concentrate and constantly clock watch. I fixated on the fact they said an hour where was she it was now an hour and 45 minutes. Then Matt came in her consultant, he was smiling, the fear rushed out of me. Her heart is pristine, better than you’d expect after nearly 16 years. Absolutely no narrowing of the arteries, no swelling. It’s all looks amazing, they had a good look round, great pressures and no sign of the old pericardial effusion today.  When you are told to carry on what you are doing as it’s working and you know you’ve not really done very much at all. Maybe that’s been our winning formula, a normal life, everything in moderation.....except cake and cookies maybe ! 

                             

This my friends is winning the lottery , actually it’s better as health cannot be bought.  I’m so proud of Eloise, she was scared but went through with having the Angio under local. She found it painful and got quite teary but she saw it through . She’s amazing and feels so much better post procedure and no grogginess or nausea. What a complete star she is ⭐️⭐️⭐️ We couldn’t fault the care she has received this day, such lovely nurses and doctors. It’s nearing the end of an era as Eloise will soon be transferring to Papworth so it’s great to end on such a high !

                             

                                 

Winning the Lottery

Monday Night’s thoughts.

“How are you?” 

Me- “ I’m fine, thank you “ said with a beaming smile.

Look closer at that smile it didn’t reach my eyes, my eyes that have felt the prickling of tears that I refused to let out. My anxiety level is pretty high at the moment. Thankfully it’s still being managed, I can hear myself doing the deep breath and sighing thing. I want to run away and escape from my fears for even the briefest of moments. I’m on high alert, I’m prepared to fight and do whatever it takes to get through these next few days. What am I running from ? Reality or just the uncertain part of my reality Eloise’s heart transplant and her over due angiogram. 

         Am I over reacting ? What do you think ? Should I fret before these appointments or just think “what will be, will be”  I’m not stupid I do realise anxiety or no anxiety the outcome of this appointment will be the same. The results will not change and what ever happens I will deal with it. I know I will as past experience has shown me that. Past experience has also taught me to take nothing for granted ! So I’m stuck between a rock and a hard place. 

    So it’s 10.40, I should be asleep but I fear trying to sleep as I know I will lie there having conversations and going through possible scenarios. My panic increases, my mind goes into overdrive . Then I count how much sleep I can potentially get, then I pop to the loo, then I’m thirsty, too hot, too cold , I’m just impossibly restless right now and nighttime is one of my enemies. Im too exhausted physically and mentally to stay awake but I’m too scared to sleep. It’s lonely at night when you’re in the dark. I’m my own inbuilt enemy and I cannot escape from myself, a gagging order for my over active brain please. Perhaps I should try and sleep, tomorrow needs me......

Tuesday’s musings. 

    Sleep, that’s better you came back to me ! Appetite you didn’t falter so I remain fat. I need appetite suppressing 
anxiety really. Let me now confess to making this trip to Gosh even more stressful. We met Rebecca, Eloise’s donor’s mum for an hour. We’d been emailing and she realised she was at Gosh chairing an organ donation meeting on picu. She asked how we would feel about meeting up, I checked with Eloise and she wanted to. I feel I have to be guided by both of them, this is more about their feelings than mine. I didn’t need to have been nervous, we chatted over coffee the most natural of conversations, it just worked and flowed. I’m so proud of Eloise you know that already but she truly is amazing. We walked away from the meeting and Eloise was happy , she just said I’m connected to that lady because of her daughter’s heart. Rebecca emailed me later, she agreed with how natural it all felt, our first born daughters are both at uni, they sound similar. She then said she liked meeting Eloise, “I see what you mean about her being chilled. How lovely is she?” I’m so glad this meeting went so well. 

      The rest of the afternoon comprised of the usual pre Anglo activity, clerking, obs, swabs, ecg, echo......transition chat, you know the kind of thing now.  Sadly, this is sarcasm the Italian Wing transplant accommodation was full so we had to stay in a hotel. Poor, poor us, a triple room, Wi-fi, TV, 
tea and coffee and our own bathroom, whoop, whoop. Good soundproofed windows so we didn’t hear any outside noise, win, win . Those that know the Italian wing will appreciate how wonderful it was to have a good nights sleep in a bed without a covering of plastic. Sleep that wasn’t broken by the early recycling of glass bottles. Small pleasures ! 

     We spent a lovely evening meandering around Piccadilly, and Oxford street, the weather was kind so we took our time. I visited Cath Kidstons flagship store, it’s a beauty, so I was happy. We have two more (un)necessary mugs ! Eloise has two pairs of jeans without holes in them. The “last supper” was spent in Ed’s Diner where we ate far too much but hey we had good reason! 

       

Wednesday arrived......

So we arrived here on Walrus ward at 7.30 knowing Eloise was the second person going to the Cath lab this morning.  Poor thing had to be cannulated on the ward, three attempts, a big bruise and a tearful Eloise later they got one in. She hates cannulas and they always struggle getting one in. The pregnancy test revealed that I’m not going to be a grandma, it always makes us smile. Eloise rocked the gown and stocking look, and looked a treat in her “ f**king ballerina tights” 

    Eloise eventually went to theatre at 10.40 she was introduced to her nurse who’d stay up the head end ! It was strange leaving her awake to walk into theatre. I’ve felt more emotional walking away previously it was nice to see her smile and get a hug before I left her. The wait for news was agonising, you can’t concentrate and constantly clock watch. I fixated on the fact they said an hour where was she it was now an hour and 45 minutes. Then Matt came in her consultant, he was smiling, the fear rushed out of me. Her heart is pristine, better than you’d expect after nearly 16 years. Absolutely no narrowing of the arteries, no swelling. It’s all looks amazing, they had a good look round, great pressures and no sign of the old pericardial effusion today.  When you are told to carry on what you are doing as it’s working and you know you’ve not really done very much at all. Maybe that’s been our winning formula, a normal life, everything in moderation.....except cake and cookies maybe ! This my friends is winning the lottery , actually it’s better as health cannot be bought.  I’m so proud of Eloise, she was scared but went through with having the Angio under local. She found it painful and got quite teary but she saw it through . She’s amazing and feels so much better post procedure and no grogginess or nausea. What a complete star she is ⭐️⭐️⭐️ We couldn’t fault the care she has received this day, such lovely nurses and doctors. It’s nearing the end of an era as Eloise will soon be transferring to Papworth so it’s great to end on such a high !

Never Enough.

                    

    

 Never enough, my chosen title for my latest mutterings. Who else is now belting out that hit "Never Enough" from The Greatest Showman ?  Loran Allred you have competition lady ! Seriously though these words are bouncing around in the empty recesses of my brain at the minute so I thought I'd try and write something down. 

People, you have various relationships in your life, mother, partner, work colleague, friend, confidante, child , family member and many , many more.  Some relationships are significant and some are insignificant ( can I say that?) You try so hard to make relationships work, no one likes failing. I like to make people happy and I'll try hard to make people smile. It's also good to make the other person in the relationship proud of you. Then there are relationships where you could bend over backwards ( I physically can't even touch my toes.....) and it still wouldn't be enough. You try and try desperately to please someone and it's still not enough, never enough. . Now it's a bit of a problem a dilemma really not being enough. You just have to decide whether it's your problem or theirs.......Now I'm old and wise(r) I've come to realise it's not my fault. I've accepted that for some people I'll never be good enough.

It's quite sad realising that you'll never be enough for someone but it can also be quite liberating.  If a person is rejecting you and your friendship they are setting you free really to be with someone who accepts you for who you are. I guess this can go for someone who puts you down all the time too. , you realise you can't please them, so you can be brave and set yourself free. No one needs to be controlled emotionally. You can't please everyone, you can't control their expectations of you, you can't control how they view you, you can't control how they judge you. It's all a game and sometimes you have to quit playing it. 

Sometimes we have to take a step back, take some time out, remove ourselves from a situation or relationship to actually focus and see it more clearly. Why do we need to feel accepted ? Why do we put certain people on pedestals ?  Why do we let people judge us ? Why do we allow toxic friendships ? I think if we are all honest we have all been hurt before but those past painful experiences have shaped us into the people we are right now. I know I'm much stronger for it, I've met the right people at the right time. I know I'll always be enough for the core of people I've allowed into my life. They love me and I love them in return, it's a genuine love. I am enough for them, they've seen the struggles I've been through, they know my worth, my strengths , my sadness, my past. Together we can laugh and smile to numb the pain of the difficult days. It's ok for me to admit there are tough days but made easier with the right people next to me. 

You’ll never be good enough because the truth is, you’re more than enough. You’ll always be more than “good enough.”  Look in the mirror and be kind to yourself and say "I am enough."

If this is a karaoke blog post we are now all belting out a floor shaking rendition of "This is Me"  while sticking our finger up at those rejected us for being "Never Enough."  Lots of love Bec xxxx

  

                   

     

Because You Are Worth it.

       

    

Juggling life, multi tasking , all systems go that's me, I thrive on it. I like organising my life and being a mother of four who parents alone I have to be organised. I liked rushing around, I liked being busy, I liked having a full schedule . See the past tense creeping in there ? Well one day I realised I couldn't do it all any more I was burning myself out and no one had noticed. I was over committing to everything and everyone . Why ? Guilt possibly, being a people pleaser, fear, the inability to say no. I guess I allowed some people to take advantage of my kind nature and my time. So I failed and I actually liked it. 

    I now pick my battles, I can say no, I can walk away and I can put my own needs first. I feel free, life is a hell of a lot easier and I feel refreshed. Why do we punish ourselves for actually taking care of ourselves once in a while ? Why are we constantly in a rush, pushing ourselves to breaking point ? This maybe life but is it living ? 

     So I decided I was worthy of some "me time"  I embrace the feeling I get from being on my own at the gym, the time I spend soaking in the bath, the time I spend reading on the sofa etc. I've learnt that as I'm running a home and looking after my children on my own it is super important to take care of ME. I don't have a replacement and I'm on my own. I have no time to burn out, if I neglect myself I will crash and burn, I so nearly did. I used to feel guilty for taking a day to relax, let alone a weekend. Everyone asks you what you've been doing all day, it seems wrong to say nothing, why ? Why do we have to rush around and fill a day ? It's not selfish to want to just chill out, it's not a waste it's necessary. 

                                      

    

  You have to take care of yourself emotionally, it's not just about drinking water and eating leaves ! So slow down, prioritise what's important, celebrate the little successes and deal with sadness rather than hiding it away. A big one is letting go of the past, I struggle with this hugely , I have a lot on replay in my head but I deal with it all now or at least I manage it well. Learning to say NO, this is also huge, I think I've just become better at this with age, quiet nights in are often more appealing than sitting in a pub ! My time is precious so I like to choose who I spend it with and what I do with my time. So just reconnecting with ourselves, replacing fear with trust and letting go of the things we can't cannot control this is self care. Just be yourself, love yourself, embrace your uniqueness this is self care. Stay in the present, live for the moment, give yourself thinking space , this is self care. Be gentle with yourself, now that truly is self care.

Can many of us honestly say that we love ourselves ? Why are we often unhappy with ourselves so often dwelling on our faults ? You wouldn't be so harsh to a friend so why are you so critical of yourself ? You have to learn to love yourself so that you feel worthy and comfortable in your own skin. We all think we are too fat for instance, you're never as big as you think. Besides, since when did a higher body fat percentage have any bearing on what makes you a quality human being ! Appreciate your body and what it can do, basically I go to the gym as its good for my soul and not just the way it potentially could make me look if I stopped eating cake. Let's be happy being practically perfect rather that always trying to achieve perfection. Just be kind to yourself , it's one of the best things you can do for yourself.Just try and be happy as you'll feel more deserving if your self esteem improves. Celebrate who you are. I have so many wonderful friends who don't realise how amazing they are and how valuable they are to me. They cannot see what I see so maybe I need to tell them more frequently ? Also don't beat yourself up when things don't go to plan, be kind to yourself. 

To me being mentally strong helps me to handle the challenges my life often decides to throw at me. It always seems to be all or nothing here ! I try to recover as quickly as I can from these "set backs " often by self preservation. So I may retreat a bit from real life and social media, I'll take more baths, I'll swim and you'll probably see a blog post pop up, ta, da !!!! All these things work for me, so I do recommend finding your own coping strategies for dealing with stress. I'm lucky in that I'm an optimistic person, I prefer the bright side so I think that always helps me too. 

I guess part of the struggle is when does self care become selfish ? Why is it wrong to focus on your own needs, desires, feelings and opinions ? Why is this perceived as selfish ? In my opinion this is my life to use as I want to, selfishness is about a lack of consideration for other people this isn't the same as a healthy self esteem through self care. For me looking after number one has given me the mental resources I need to reach out to my friends and those I support in life without leaving myself drained.

                                         

So I give you all permission to just be you and take some down time whenever you feel over whelmed. Life will otherwise chew you up and spit you out. So relax once in a while without guilt, go on you're worth it . 

Dedicated to some beautiful souls that I'm privileged to have as my friends, who don't recognise their own worth, I love you .

         Bec xxxxxx