Full of Life

Full of Life ❤️

18 years 

216 months

936 weeks

6374 days

        

      

Happy 18th Birthday Eloise. For most parents they knew this day would come. They knew they’d watch their baby girl grow into a toddler, a young girl, a young teenager and onto being a young woman. Nothing has been certain here, no promises just statistics and a whole host of post transplant issues that showed us we were in for a battle. But we are a team and we’ve got here precious.

      I hope I’ve given you a life that you’ve enjoyed , I’ve done my best and always tried to do the right thing for you. It was incredibly hard deciding whether to put you on the transplant list. I guess being a paediatric nurse I knew some of what you’d be facing, the painful procedures being the most upsetting. Could I put you through that I wondered at the time. I wasn’t ready to let you go though, I never ever will be. I hope I wasn’t selfish when I chose to sign those consent forms , when I let you go to theatre for your heart transplant. I hope the bad days have been minimal for you , I hate seeing you in pain and even then you remain incredibly brave. Post transplant life has expected a lot from you and you’ve never given up, you’ve never said “why me?”

                                  

     

      Life is cruel and I wish you’d never learnt that at such a young age. I wish you hadn’t been pushed into a world where your young friends die. I can’t protect you from the harsh reality of post transplant life as I chose not to build a bubble around you. I decided to be truthful from the onset, whether I got this right I don’t know but I think it was the right decision, do you ? I admire your strength and how you get through the toughest of days without any drama, we could all learn so much from your quiet determination. 

          I didn’t dare imagine this day but at the same time I wanted it so badly. All those growing up milestones that people are scared of because their baby is growing up I’ve been desperate for you to achieve them. Life has gone fast, can it really be 18 years since my Warrior Maiden made her 8 week early entrance into the World? I held you in my arms so briefly and then you were whisked away to Neonatal Intensive care. I’ve never got used to handing you over to strangers and leaving you. However I’ve had every faith in all the medical teams that have played such an enormous role in your life, maybe they should get the birthday cake ? 

       

         So here you are another wonderful year older, possibly still none the wiser as you often hang out in Weasy’s World ! I know you still feel like a child but you are evolving.....slowly ! Change from adult to child doesn’t happen in one day and you’ll adapt. In the meantime I’ll carry on dragging you along and helping you with your hospital appointments etc. Remember you’ve got a lot more to deal with than your peers and it’ll always ok to ask for my help. You’re an awesome creature, who had an angiogram done awake and did so well despite being so very scared. You could have said no, you could have bottled it but no you endured it as you’re that kind of person. 

              18 years, 16 of those a gift from Zara’s family, the ultimate gift, the gift of life. The gift that money cannot buy, a priceless gift from a stranger. We are celebrating today because of their decision and their bravery. Zara is a huge part of our lives and we never forget her. We are so lucky to have Zara’s family in our life so they can watch you grow up too Eloise. I’m so glad you’ve know met Zara’s mummy the time was right this year for you both. 

                                  

        So Happy Birthday precious, can you get a chocolate hangover ? I’m sure you’ll be overindulging in huge slabs of Colin the Caterpillar cake. Enjoy your day Batgirl 

    Loads of love Mummy xxx

                                 

Finely Tuned.

My finely tuned life, became a little off balance six weeks ago in more ways than one ! As you know I had a fall that resulted in me fracturing my foot and being put into a plaster cast and given crutches. The instructions being I wasn’t to put any weight through that foot. So immediately off balance, my hopping skills are poor, I’m absolutely rubbish at standing on one leg.  Then reality sets in, I’ve lost control and I have to ask for help. I prefer to do everything myself , I love being independent but that was taken away. It was so frustrating but also a humbling experience as I have friends who deal with much bigger struggles than this daily, for them it never ends. I knew that I’d be standing back on my two feet at some point .

                                

          I’ve made my life balance over the years in order to be the best version of myself mentally . If self care is selfish I’m an extremely selfish woman. I’m lucky to balance the needs of my family and my own needs. One of my biggest needs is exercise, obviously physically I’m no advertisement for fitness but mentally I’m pretty sound and that’s why I go. Anger management, solitude, tension release, zone out, happy hormones and of course it’s important to breathe. Let’s not forget that Homes Under the Hammer can be viewed on your very own screen on the cardio machines ! When life gets tough I thrash that gym, however here I was under house arrest when I so needed head space. Eloise had an appointment at Great Ormond Street, this increases my anxieties hugely and I had no way to release my tension. Another go to place when I’m stressed is the bathroom for a long candle lit soak in the bath. Again access denied. It was like I was being tested, let’s see if she cracks up, obviously I didn’t and I remain crazily sane ! I’m thankful that during the time I was in the plaster cast the weather was amazing as sitting outside really helped. I devoured books, losing myself in their adventures for hours. 

         I guess I did manage to rebalance my life during this period, I had to accept the changes and adapt to them. Finding balance again was important to me. I had to decide what was important and that was allowing my leg to heal. So I had to miss out on a few things, I had to accept I couldn’t do everything around the house but I prioritised what was important. I became excellent at hanging out washing on one leg ! 

                       

                                 

     Of course times of crisis also allow you to see who steps up who offers emotional support, who brings you cake, who ferries you around, who sits with you to keep you company to break up your day. It was a very isolating experience, quite strange I’m saying that as some days when I am out and about I get totally peopled out and seek solitude ! Maybe it was just the freedom to choose being taken from me I didn’t like. It was also good to see the kindness of strangers, the people who helped me while I was wobbling around on my crutches, the helpful staff at the train stations, the patient taxi drivers, the staff at the BRI fracture clinic and A/E. So thank you to all of you that dragged me through the tunnel towards the light and warmth of Spain. To those that didn’t bother sod you then. 

                                 

   So many lessons learnt during such a short period of time, so in hindsight maybe I just needed to slow down, take a deep breath and appreciate the people I’ve chosen to surround myself with and find some peace within myself. I didn’t fail. 

                      

       

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 !