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 💔

Christmas -Handle with Self Care

Christmas Handle with Self Care.

       

Christmas isn’t / wasn’t for me. I guess I’m not alone and for every person who gets excited for Christmas there’s another like me taking a deep breath and hoping it’s soon over. Don’t get me wrong as I do love aspects of Christmas, sparkly lights (who doesn’t love them!), the Salvation Army playing Carols, coming together with friends and family and sharing the Lindt Balls.......maybe not that ! I do tend to get run down at this time of year and catch a cold then add in general exhaustion. This year I had to forfeit a wonderful night out with friends so I was well enough for the big event Christmas Day.  Christmas feels like one big rush in the end after it starting to pop up in September, you can’t do the bulk of preparation until the end. Even present buying as children have this habit of changing their minds ! There’s the running around to buy presents and wrap said presents, buy the tree and decorate the house, write Christmas cards (if you still bother), shop for all the food, and then slave in the kitchen on Christmas Day, thankfully my mum is the main chef and I’m a kitchen hand. . It is such a busy period, for some of my friends it involves visiting different parts of their family for different meals, or over different days and that can involve a lot of travelling. Christmas just isn’t my kind of relaxed. 

                                                Parts of the run up to it I enjoy especially visiting Christmas Craft fairs and markets, actually that’s probably the only bit ! I often stand there during the weeks before the event wondering what the hell am I doing, I know nothing unusual there ! My lists need lists to stay ahead of the Christmas game and organised. I just find it all a bit crazy this mad dash for one day, one extreme roast dinner and the giving of sometimes unwanted gifts just because..... Actually I stopped that this year, decided no more going around in circles in Town until I was inspired to buy something vaguely decent. So therefore if you didn’t volunteer gift ideas you got the cash cop out ! Food shopping, why does my dad have to have a jar of pickled onions and a jar of beetroot ? Why do we need a huge selection of soft drinks when 50% of the household normally drink tap water. The cheese board when we only usually have cheddar, the selection of crackers when we usually have Jacobs cream crackers. On the point of crackers (the pulling kind), I forgot to buy any, oh my god, such a huge festive crime. Which led me to scouring the shelves of many shops after work on Christmas Eve. I eventually found some I was prepared to pay up for. Let’s just say there is a tray in the dining room with ten unwanted plastic items from said must have crackers !!!! Why have we gone so crazy ? Although I did wander what happened to all the unsold Christmas trees outside Sainsbury’s on Christmas Eve, just 24 hours later I walked past and there was no trace, well a pine needle or two. Oh and the supermarkets are now reminding me that it’s nearly Easter ! It’s like Christmas never happened but it did and it took most of December in its jaws too, swallowed up in the frenzy. Actually that may have been work that did that, I did work a couple of Saturdays !  

     Over Christmas I really, really miss my space as I have to surrender my bedroom to the old folks. I have to share a room with someone and listen to them breathe all night while I battle insomnia and need the loo, ahhh yes I miss my en-suite ! Oh and I live with white noise addicts and I’m the only one who sleeps without a fan. Over Christmas I miss my routine, I miss my walks, my gym trips, my swimming and my aqua aerobics. Those are the things that help keep me balanced, they provide what I need. It’s all about self care with me, otherwise the cracks begin again. Christmas provides me with too much thinking time without offering any respite. No going to bed when I want, no long baths, no candle lit bedroom, no getting lost in a book, in its place sitting around in front of the TV making polite conversation. Those that know me , know this isn’t me. I rarely switch on the TV, I hardly ever spend any time in my living room. I have the attention span of a gold fish.  So I find it a huge strain. I stay ok because I work hard at being ok, does that make sense ?  Going to work on the 24th and 27th helped, it broke things up. 

     We have all had enough of the party type food and want simple meals again, it’s like being on holiday and eating out for two weeks, you crave a sandwich or a piece of toast. I’ve had enough of all the weird food combinations because things need to be used up, trifle for breakfast is acceptable during this week of post Christmas weirdness. We are nearly over all of that so it’s obviously time to mess things up again with New Years Eve and Day. I won’t stay up to see the New Year in unless I suddenly stop waking up at 4.50am every day ! My 50th year, I better think of some unobtainable New Years resolutions to fail at !!!! Nah why bother ! So there you are my post Christmas muttering, I’m either bah humbug or I’m just honest, you can decide. ❤️ 

   Wishing you all a Happy and Healthy New Year 2019 ❤️ lots of love Bec ❤️

                                         

    

          

Happiness- Love the Life You Live

Love the Life You Live - Happiness

   Happiness, I think you choose it. I like to or have to remain positive to get through certain aspects of my life otherwise the sadness would consume me. I just find it easier choosing happy, it helps me adjust my mindset and determines how I interpret what’s happening. Choose to be happy. Choose to push away negative energy. Choose to be happy rather than to suffer. I like to see the good in everyday, everybody and everything. Of course that doesn’t mean I always find the good in people or situations that I find myself in but I like to try ! Only you can you make yourself happy. I would advise not relying on anyone else to make you happy. If you aren’t happy with yourself, you won’t think you deserve affection and attention. So make yourself a priority.

 I like to find happiness in small everyday things , things that make me smile ahhhh Sheldon the Lobster, wearing dresses, eating cake, reading chick lit, swimming, earl grey tea in a gorgeous Cath Kidston mug, spending time with family and friends.......the list goes on. My far too many photographs document most of the things I love in life on a daily basis. I think my choices enhance my life and how I generally feel, I enjoy creating happiness.

       

I deal with life one day at a time , I recommend this as it’s easier to focus on the present, not yesterday or tomorrow. Now this is a huge thing for me, because of what happened with Eloise and a few other traumatic and unsettling life events I don’t look back too often. I cannot change what happened but I can change how I react to it. Obviously I do reflect, I do feel anger and great sadness but I deal with it as best I can . I just feel that time is now, I am here in this very moment. I don’t know what tomorrow will bring and that’s probably for the best ! I believe in staying focused on today rather than worrying about yesterday and tomorrow. I don’t want to miss out on the happiness that’s available to me right now.

 

The art of being grateful also plays it’s part. I like to try and turn negative thoughts into more positive ones. This is especially true when dealing with Eloise’s heart transplant. Yes it’s so bloody horrendous that a simple virus left her in severe heart failure but it’s a miracle that she received a heart transplant that 16 years on is still beating strongly. I’m eternally grateful for all those who saved her, especially her donor family. I think being grateful brings on a positive mindset change, a better way of thinking and dealing with life. Just my opinion and something that works well for me. Gratitude makes me appreciate all I have in my life, my beautiful family, fabulous friends, my home and all it contains, plus all the loveliness I embellish my life with.  So maybe take a look at all the happiness you already have in your life. Focus on the great things you have already and hug those beautiful people who fill your life with love and friendship right now. I hear people saying “I will be happy when…” I’ll be happy when I go on holiday , when its not raining, when it’s payday ,when I lose 10 pounds… but happiness comes from living in the moment. By putting happiness on hold until the future,you’re robbing yourself of precious moments. Love the life you live.

              

I like other people to be happy too, it’s lovely to make someone feel happy when they previously felt down. When you turn someone’s mood or mindset around by helping them, you can sense it and that happy feeling flows back to you. People like to be around happy people.Happiness and laughter are contagious. Even if I’m really stressed out, especially at work, I try to be positive and energetic because I know it will only bring others down if I am negative (except on Mondays when I’m not at my Sparkly best ! ) People tend to dwell on the negative and bring others down. It is best to choose carefully who you let into your life. I find my life is better if it’s filled with like minded positive people who lift me up and only want the best for me and themselves. It’s good to share and spread happiness around, it’s at the top of my to do list plus a sprinkling of kindness ! Look after your friends, nurture your friendships and show them they are appreciated. 

   Do more of what you like to do, make time for the things that make your heart sing. There is nothing wrong with self care and giving yourself time to just be. Free up some time to do the things that make you happy. I love making plans , especially planning days out with my children and my gorgeous ladies. The gift of time is one of the best things you can give yourself and those you love. We live in a busy World but we do waste time that we could use in a more positive way. There is always time that you can free up, you have a choice, choose happy.

                                       

      

                              

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