Behind the Smile

Behind the Smile.

         

I like to smile, I have the crows feet to prove it and I'm very thankful for good teeth that allow me to smile broadly ! Thinking now of the dental horrors regularly seen on Jeremy Kyle ! Here I'd like to take the opportunity to say a few thank you's. Thank you  orthodontic services at Musgrove Park Hospital for my removable brace, thank you Colgate toothpaste, thank you to lipstick manufacturers for colouring my smile and thank you mum for good teeth ! 

       Seriously I'm a generally happy soul but sometimes I'm smiling to hide the pain from you. It's easier you see than explaining, it's easier not owning up to how I feel as saying it out loud makes everything seem worse. It makes it more real. I've had a blissful six weeks at home with my children.  Everyone has been well and we've had the opportunity to spend quality time together at home, on day trips and on holiday. It's been all very normal. It's been perfect, nothing has reminded me of the darker times. Oh and that thing called sunshine brightened up most of my days. I have been able to relax fully and read a library of books whilst sampling many icecream delights. Oh and the odd alcoholic beverage !

                                    

       

    

                 Then Eloise had to have her blood tests taken on Thursday, this also meant a couple of frustrating phone calls to make the appointment.  So now we're waiting for the results which involves harassing the transplant team by email and phone. Then her next hospital appointment will need to be arranged for next month, again this will need to be chased up by me. We've sorted out a cupboard of medication, put in prescriptions and collected a previous order. I know none of this is a big deal but it's a reminder that Eloise has had a heart transplant. Then this morning I had an awful dream , I'd been told Eloise had chronic rejection and her treatment options. I wrote out a whole post updating you all. When I woke up it took me a while to know I'd been dreaming or having a nightmare. Sadly some of my transplant family are living this nightmare right now. One day it could be our reality too, nothing in the transplant world can be taken for granted, not even one day. I look at Eloise enjoying life, hanging out with her friends, doing her school work, loving her tortoises, laughing with her siblings and I want to see her grow up. I love the young woman she's growing into. She's 16 on Wednesday, to have her with me aged 16 is wonderful, once it seemed impossible but I know her now and I'm greedy for more. Yes I'm grateful for every extra day I've had but I'm also sad that her life maybe limited. Then there's the guilt for even thinking she maybe taken from me at a young age, like I've written her off, like I've given up on hope, I haven't.

            It's Organ Donation Week this coming week, it's starting tomorrow and I usually immerse myself in it but I haven't this year. Im not ready for it. I'm wondering if it because I've just spent 6 weeks mainly out of the transplant loop. Not ignoring my transplant family but not submerging myself in it either. I have looked after myself and my own . I took a step back and a few deep breaths. Now it's arrived and if it's anything like last year's event media coverage will be poor, but I can't complain as I've done nothing to promote the organ donor register. Well I did try and beg for a free gym membership for Eloise but Duncan Bannatynes not replied yet........think of the publicity for your health clubs Duncan ! 

        My smile is genuine as I have many, many, many reasons to be happy and lots of fabulous friends who light up my life by just being them. Maybe we all need to live our life like we are dying, because we are. I try to do something that makes me smile every single day, all the little things soon add up. The tears I experience aren't too often even though they threaten to creep from my eyes, I halt them. I'm not depressed, I don't think I have ever been and I know I'm lucky on that score. I think I have every right to express sadness and that actually shows I'm capable of feeling. I'm just a human, trying to do her best for many people while remembering to look after herself.  I'm just ME and I'm not so bad..........

                       

      

The Struggle is Real

The struggle is real - 💙

                         

   

Wow it's been nearly a month since I last found solace in my blog. Poor neglected page, I take from that the fact life has been busy, beautifully so not the boring grown up drudge busy but fun we're on holiday busyness. We are lucky enough as a family to be able to afford a holiday away in the sunshine together. Time to just be a family with nothing getting in the way. In fact three of my children are still basking in the glorious weather in Spain. God I'm missing them so much, can't wait to hug them all. Totally appreciating that on Sunday I'll have them all in my arms again. I'm so lucky to have the four of them I know that. Sadly I have lots of friends who have lost a baby or a child, they'd do anything to receive another hug. 

    

    I'm generally a happy person and I often have a smile on my face. Sometimes I'm just facing the world with a smile and I'm crying inside. I know I'm not the only one who does this. Maybe it's just easier not to have to explain how you're feeling. Those who truly know you will see through this facade though. They can tell you aren't "your normal self !"  When I friend makes this discovery with the fateful words "are you alright?" Then I'll cry, the mask of happiness crashes to the ground and the tears cannot be hidden. Actually it takes courage to face the world and go about your day to day life while you're breaking inside. However I use that strength to its best advantage , knowing that each day is a new day and that my track record says I'm a survivor. I'm a different person now, there's no going back in life. No rewind button, no second chance or opportunities to change what you've been through. 

                                              

  Some days this holiday I've done nothing, if the Sun's been shining I've taken myself outside with a drink, book, deckchair and a few tunes on Spotify and just relaxed. I've had to stop feeling guilty and realise looking after myself isn't a waste of time. I've just had to allow myself this time to simply be. I guess it's been like my bath zone therapy with added vitamin D ! Other things like chores can wait but your mind can't. If it's struggling you have to listen to it and take the time out you need. Some days all I'm doing is coping but that's ok too, it's enough. I am enough, I am ok. I waited five years to be divorced then it arrived and it's shaken me a little. I'm sure I'll find my footing again and get everything organised financially . Things like this also put my mind into turmoil . It's been tough enough for me to welcome my enemy insomnia back into my life. I've still some way to go but I'm proud of how far I've already come. I guess these annoying life struggles have changed me, I think I'm stronger, still need to work on the roar . As to whether I'm a better person, I don't think I can judge that ! I just know I have to do this my way, so I can't blame anyone, or rely on anyone, I have to be independent for god's sake I am nearly 47 !

  Life is tough at times, but can be made easier by having the right people by your side, looking out for you and steadying you when you stumble or helping you up if you fall. I don't feel we have the right to judge people or be negative about them. Are you perfect, go on be honest ? Even I'm only practically perfect.....in every way though. We all have our faults and flaws , things we aren't proud of. We are all learning throughout our lives and you live life through experiences. I've learnt who I want to share my world with, a small inner group of friends. I know they want to be there and in what capacity. They believe in me when I see nothing positive, they love me when I feel unloveable, they spur me on when I want to give up. I hope I pay this all back to them, we should all pay forward, the world would be a better place. Most of the time I'm not a misery, and I hope my friends get to feel my positive energy.

I don't want you thinking I'm not happy, I am. You know how it is with me. I'm living the almost dream with a small black cloud.  Most of my blog posts are the same really, woe is me. I am ok but I also know it's ok not to be ok. I don't have to be all singing all dancing every day , just 99% of the time ! I just see these struggles I'm having at the moment as steps towards a better me, a better life for my family. I know they'll end too. My family is strong and we've overcome many obstacles together so what's a little struggle going to do to us?  All we want is to be happy, well healthy as well ! 

       

    So there you are another random blog post ! For now I'll just accept the few struggles I'm in the middle of. The word acceptance means that you perceive reality accurately and consciously acknowledge it.  So I'll try and do that, sometimes it's hard to accept tough things but struggling with them is even tougher. I need to accept I'm only human and therefore I don't have any super powers. I think by accepting my struggles I won't be swallowed up by them, I'll confidently overcome them. I guess you don't realise how wonderful life is until you face challenges and struggles, in our case Eloise's heart transplant ,extended family health issues and my divorce . Life not always easy but in my opinion always worth it. Appreciate it people.

             So I'm off to bed in a minute to wrestle some demons and try to grab some of that valuable commodity sleep ! 

Divorced - Celebrate Life

Divorced - celebrate life ❤️

            

      

It's taken me a while to decide to share the news that after five years of separation I'm finally divorced. You see I don't want you congratulating me for the wrong thing. I don't need congratulating for having a failed marriage that had to be terminated by a court judge. That really isn't the right cause for celebration in my eyes. When I married it was for life and sadly things didn't turn out that way. So please don't congratulate me for that reason. Also I'm only divorced from one person, someone who no longer loved me. 

    Celebrate instead the new beginning that my children and I are living right now. We have made ourselves a good life. Our home is a calm and happy place, well until certain combinations of children fight over control of the tv remote. We aren't the Walton's so don't think it's all sugary sweet ! We are a tight little unit and I like that. When there is only you to do everything for your family you just don't mind. When there are two parents and one isn't doing their share it causes resentment. I don't have that anymore and I feel lighter for it. I'm so proud of them and everything they have achieved so far and I'm excited for their futures as I see nothing holding them back. I like the way they are developing , they are all individuals capable of great things if I nurture them properly. My four children came out of the broken marriage so please celebrate their lives with me and how blessed I am to have four beautiful, amazing children. 

                                            

  Celebrate the woman I have become, she was probably always there but kept quiet, now she makes herself heard even if sometimes she still whispers. I am no longer mute. So please celebrate the fact I'm evolving all the time and I like what I see. I feel like "me" again, does that make sense ? I feel stronger, both physically because of going to the gym, exercising has been very positive, I can see my shape changing and I know I'm making myself healthier. Mentally I'm in good shape too, thank you blog, thank you those who listen to me, thank you to those who read and comment on my therapy blog posts ! My confidence has grown , so I feel differently about myself and I feel I make better choices in life. I'm no longer invisible, even today walking home from the gym, I smiled and greeted a few people and they all saw me and smiled back and that feels good. Celebrate the changes in my wardrobe ! I know totally shallow but it felt so good to start dressing up every Friday, to put on a frock instead of jeans whatever the weather ,season or occasion. Frock Friday changed me and I'm barely out of a dress now, I'm wearing a skirt today though. It's been good to take pride in my appearance again, I am a little lipstick obsessed though, but it dresses the smile ! So celebrate me "growing up" taking on the home on my own.  Yes I know I'm still not a fully paid up adult and I still freak out at bills ,DIY disasters and things going wrong in my home but Google and YouTube are quite helpful. 

                                        

    

  So can you understand why the end of my marriage and my divorce isn't the thing to celebrate ? Celebrate my new beginning please, that would make me happy. So thank you to those who have been by my side for the past five years, I'm incredibly grateful to you all. Thank you to those who have walked into my life since and the biggest thank you to those who buggered off as you truly weren't the right people to be in my life. 

So let's all drink to New Beginnings and celebrate life  🍹🍸🍹

                                      

It's the little things.

Sometimes completely out of the blue it's something so small that has the power to make or break how you are feeling at a particular time.

So there I am, my life ticking along nicely, feeling happy and content as I'd finished work for the Summer. Then bang one piece of A4 paper burst my bubble of happiness and I felt sad. The girls came home with their end of year progress reports and included in the envelopes were their yearly attendance records . I knew last school year wasn't great for Eloise but there it was in black and white , attendance 89.11%. Actually it was in black and white and highlighted in red, just I case I missed it I guess ! Also provided was a table of how awful this attendance score was , Eloise's therefore equated to the Government labelling her a persistent absentee. Millie's of course was fine so she can have a pat on the back from the Government as she doesn't screw up their statistics, neither did Henry with a 99.6% attendance score. 

       At the end of the day those with a 100% attendance are lucky, they must be fit and well with fantastic immune systems to not get taken down by the number of illnesses flying around school. Add in the mothers you hear in the background talking of their child being sick in the night but they are alright now. The ones whose child doesn't have to adhere to the 48 hours away from school after an episode of diarrhoea or vomiting as their mother has more important things to do today, I despise those people as their child infects mine and my child doesn't bounce back and whatever she catches lingers on. 

  

   Eloise will never get 100% attendance even if she wasn't off sick for a whole year as she has essential medical appointments. I don't take her out of school for dental or GP appointments but she has to go to GOSH and Bristol Childrens for appointments and blood tests that fall into the school day. I remember school asking if she needed the whole day for an appointment that was in GOSH ! Well actually this school year she's had five days off because of GOSH appointments, as it was her Annual Review with angiogram in January. I think it's wrong that she is put down for a morning of being absent when she misses one hour and not even a whole lesson to get her bloods checked. This test has to be taken in the morning as its a drug level check that's taken 12 hours after her lost dose of Tacrolimus .

       She's being punished for having a life limiting condition, she didn't miss school because she is on holiday or at a music festival or a day out. She was ill at home, quite ill as we all know nurses deliver tough love at home ! 

       I'll freely admit I cried yesterday for Eloise and this stupid situation but that only made me angry with myself because I let this stupid percentage figure do this to me. I think the idiot that highlighted the 89.11% annoyed me the most. Do you think I need reminding that my child is unwell ? Why didn't they stop and think about Eloise and her health issues ? The child they still have marked down as having heart problems on certain pieces of correspondence ! 

        Maybe they'd like to swap places with her ? I'm sure she'd rather be in school than being repeatedly stabbed with a needle as her veins have had enough. I'm sure she'd rather do a maths exam than be cannulated, the anesthetist repeatedly jabbing at her as tears roll down her cheeks. I'm sure even a PE lesson is favourable to an exercise tolerance test, where you feel you are suffocating because of the tight fighting breathing aparatus. I'm sure she'd rather be with her peers than suffering horrendous migraines and managing them with hardly any analgesics because she's not allowed any non steroidals. My child isn't a skiver, I'm sure she's in school feeling awful for many more days than the ones I've let her take off. Surely all you need to do is look at why she's off school then stick your highlighter pen where the sun don't shine ! 

     All the letter did was highlight the fact that Eloise isn't the same as her peers, it just reminded me of her medical conditions. We try to make every day normal as Eloise is just Eloise. Yes she takes medication every day, twice a day but that's the only difference on a day to day basis. My child isn't a failure she's a bloody miracle, every day she gets up in the morning alive is a bonus for us. She's doing well at school, she's a hardworking, conscientious, and enthusiastic student, who despite needing time off hasn't fallen behind with her studies. 

    That school is lucky to have my Eloise as one of their students, she's a digital leader and even helps tutors with IT issues, she's redesigned parts of a website and is the only student in her year to have passed Microsoft Word, PowerPoint and Excel exams so far , she's now studying for other qualifications. Let's celebrate what she has achieved this school year not focus on something that's out of her control. 

        

Grateful

Grateful, it's a word that is used often in my transplant world. We are all grateful for the second chance that organ donation has given either us or our loved ones. We are grateful that someone donated their organs, we are grateful to the donor families that said yes. We are grateful for the skilful surgeons, the transplant medics, the hospital teams that keep us or our loved ones alive. When you see the dictionary meaning of the word grateful you can see why it's used so often.

"grateful

adjective- feeling or showing an appreciation for something done or received.

1. synonyms-

   thankful, filled with gratitude, appreciate , indebted, obliged, obligated, under obligation, in your debt, beholden "

   However do we always have to be grateful ? Why does it feel like we are moaning and being disrespectful to the organ donor when we complain about ill health, missed opportunities, post transplant complications, hospital visits or any normal aspect of day to day life ? Why can't we complain without feeling ungrateful ? I think we are as entitled as the next person to say we are struggling, that things aren't going so well.

  I often read posts from members of my transplant family that start with an apology. "I'm sorry for moaning but....."  Why can't transplant recipients moan when they are feeling rough with a cough and cold for example ? You are feeling ill so why can't you say that without feeling guilty? Sympathy should be given freely, we are all entitled to it. Sadly you'll usually find someone will say "you should be grateful, you've been given a second chance, not everyone is so lucky, you have x,y and z"  The transplant recipient then feels guilty for "whinging."  People don't realise that these casual remarks cause upset and feelings of guilt. 

It's just the need for a transplant and subsequent transplant can change your life and dreams. I'm thinking of all my adult female heart transplant recipients who have been advised not to have children because of the strain on their hearts and the potential kidney damage a pregnancy can cause. So many of us dream of becoming parents and to be told no, is a crushing blow. So many of these ladies are told to be grateful that they are still here, of course they are ! It doesn't mean they aren't grateful for the life they have been given , they are. They just saw a life with their own children in it. As humans we want to reproduce and sadly for some this isn't advisable. Never think these ladies aren't grateful for their second chance.

Complain , complain, complain when you need to my transplanted friends and loved ones of those transplanted. Let everyone know that post transplant life isn't all sparkly and happy ever after. It can be tough sometimes , bloody tough, challenging, life changing, painful, mentally draining , depressing and so much more. Add in the survivors guilt . Add in the "need" to honour your donor by living some amazing life when some days all you can do is get up in the morning . Even while writing this post this evening a lovely friend posted about their child needing to undergo more tests on Friday under anaesthetic. Included in the post were the words " I'm not complaining as so many go through more...." Actually most people go through their lives going through a hell of a lot less my Northern friend. Never feel guilty for saying this isn't fair, it's not fair. This doesn't mean you aren't grateful for the transplant , it just means post transplant complications suck ! 

Do you think anyone whose life has been touched by organ donation forgets their loved one is only here because someone else died ? We never do. When Eloise had her two rejection episodes I felt guilty that we'd not looked after her transplanted heart properly. I worried about her donor family and how they'd feel if Eloise continued to reject their child's heart. I didn't want to moan to Rebecca about everything Eloise goes through but I wanted her to know that sometimes post transplant life doesn't go to plan. I'm sure she knows I'm eternally grateful but at times it's not easy being the mother of a transplant recipient. 

 Of course we are all grateful because transplantation has given us precious time, on the whole it's quality time but when it's tough let us voice how we feel without guilt. By admitting we are struggling we aren't disrespecting the donor we are just being open and honest. So please let us share with you the good times but also the hard times without making us feel we are ungrateful.  ❤️

Without Tears.

I didn't cry......

                         

For the first time in fourteen years on the 9th-10th June I did not cry, not even one solitary tear. I wasn't just being brave , I just didn't feel sad or emotional. That's not to say I'm devoid of feeling, it just means I wasn't pained by the past. Of course next year I may sob uncontrollably but this is now and I stayed happy. I watched my brain play its usual transplant day flashbacks, the horror of watching Eloise in cardiac arrest with the team working on her. The arrival of her donated heart, conversations with the donor coordinator, saying goodbye to Eloise at the door of the theatre suite. I saw all of it vividly but it didn't crush me.

 I guess I know how the story progressed from that point and the twists and turns it's taken since. I also know the story hasn't  ended and there are many more pages of life in Eloise's book. Today I feel positive and I'll hold onto that feeling. The past cannot be removed and the future isn't certain but today is mine.

    I know people love to quote about time being a great healer, yes maybe it is but not for everything. I don't think it heals bereavement , I know Eloise is still alive but I still grieve for her heart . I suppose I have come out of the most difficult days as the first year post transplant was horrific .I haven't reached acceptance even though I didn't cry yesterday. Do I actually need to accept what happened ? Do I need to move on ? It's not like this blights my daily life, it just taints it a little on significant dates and hospital appointments. I think this is perfectly normal as we all have difficult days when we think we cannot handle anymore but we hold onto hope and the fact we've survived every day in our life so far! 

    I've just got to keep moving forward , most of us experience stressful events and difficult situations these things impact us in one way or another for the rest of our lives. You just have to try and turn things around, learn from them, become a stronger version of you. It's a fact of life that hard and sad times happen. So you have to remain positive and enjoy the good times and hope they always outweigh the bad. That is what gets me through, I know I have a good life with the right people in it. Over the last couple of years since writing this blog in January 2014 I've given myself opportunity to feel and process every thought and emotion. I have found writing to be a valuable outlet in expressing how I really feel. I buried my emotions for far too long , this blog is my safety net, my therapy. It's good for me to feel.

     I guess I didn't cry yesterday or Thursday because the sad times previously experienced made me appreciate the wonderful few days I've just had with the people I love. This is of course work in progress but isn't that the point ? 

Despite me liking to sometimes think otherwise I'm no Mary Poppins although I'm practically perfect 😉I'm not Dorothy although there is no place like home and I own those shoes 😉. In fact I'm not even Cinderella, I don't own those shoes but I still want my happily ever after......please ?

                      

     

Has Life changed Me ?

                                        

                                       

     

To those of you who have experienced a life changing event do you think you've changed as a person ? I've just been wondering again today how different I am from the woman I was 14 years ago. I know I'm older but not particularly wiser ! How different am I from the 2002 me, have I been shaped by the life events I have experienced because of Eloise's transplant. Is my temperament different ? I'll never know will I ? I just hope I'm the best me I can be. 

 Of course my outlook on life is different , it's all about being positive each day and making the most of what we have as a family. It's about making memories and enjoying new experiences. I've changed the way I look at everything around me, how I look at the other people in my life and how I see myself. It's helped me to prioritise what and who is important . It's made me more focused and determined to have the life I want for myself and my children. I think it's made me stronger, well at least tough on the outside but with a soft centre ! What choice is there but to carry on ? I just draw on the strength I've shown during my times in hell. I can't change the past but I can make sure   I enjoy every extra tomorrow I'm granted with Eloise

     My worries have changed, although I hate it when appliances break down, or receiving unexpected bills etc I can prioritise these problems and deal with them or I can phone for help ! I can rationalise these things and cope. They are in my control .......just. However my worries about Eloise often consume me. Her health is such a balancing act and we don't always achieve the balance. In fact she's ill at the minute this always seems to happen after a holiday or mini break. Such a shame that Eloise enjoying herself comes at a price.  Her future will always be uncertain because of her transplant and health issues. I know nothing in life is certain but worrying that you'll outlive your child isn't a normal worry for most people. I'm in an abnormal situation in a normal world. I do like being in control of my life but there is no way I can control Eloise's post transplant health so as they'd say in Frozen I need to "Let it Go."

    I said earlier that I have become stronger I guess that's because of the fighting I often have to do to get Eloise the best care. The follow up and medical input she needs. I seem to have to chase everybody to get appointments, letters, medications. Nothing happens as it should and communication between the Drs involved in her care is often sketchy. This applies also to her education and thankfully school is being a bit more supportive now. Take today Eloise should have taken her GCSE science practical exam which is worth 25% of the mark but she's been in bed all day. So school said she can take it tomorrow with another class or even Friday on her own. They can even reschedule it for another week and she can take as many breaks as she needs. I'm happy with this and feel they're meeting her needs. I'm glad I fought so hard to get her a medical care plan. I guess it's easy to easy to fight when you're passionate about something or someone !

       Really though we are being shaped and slowly transforming after every life event we experience. So none of us really know who we might have been if things had worked out differently. I'll just have to be satisfied with the me I am now, well until the next modification !