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..........

                       

      

Don't Burst Our Bubble !

We've had a lovely couple of months since we had the good news in January that Eloise's coronary arteries all looked good and her heart was still healthy despite the two rejection episodes. Eloise was seen again in February by Dr Martin and again no concerns. She's had her bloods taken regularly and her Tacro dose adjusted accordingly . In fact only the one adjustment in 3 months so that's good, more stable.

    We've enjoyed ourselves and been relaxed. Life's been good. I've been happy and not afraid to say it out loud but now as we are getting nearer to Wednesday I'm losing confidence again. Saying everything is fantastic seems wrong , not surprisingly my happiness is reflected in my daughters health. If she's ok and doing well everything is perfect if not it's tough. With Eloise you can't just look at her and say she looks extremely well and healthy , she always does. Even when her heart was severely compromised in September she still looked incredibly well and felt great. 

                                        

           At times like this I wonder what life would be like without transplant issues, without this constant worry that things are going wrong, life expectancy figures etched in your head. Years of predicted post transplant life going by like sand running through an egg timer, hoping the sand doesn't run out. What is life like ? I suppose we all have our fears and worries in life, some big and some small. To me though there cannot be anything greater than a mother's fear of losing her child. Other things can be replaced, solutions found, changes made , but nothing can bring back a living person after their death. 

       Looking at it in another way though, are we part of the enlightened ? We have seen first hand the fragility of life, been given a second chance for our loved one because of organ donation. Do we live our lives differently ? Make every day matter, pack in as much living as we can in every day. If opportunities are offered are they taken up , just because.....When things don't go quite right in life do you cope with it better because for now you have survived the unimaginable . Nothing can be worse than what you have been through as a family except death itself. I don't know the answer. I do know we have a lot of fun together as a family, that if we want to go on a day trip for example we do, hence an impromptu overnight stay in Weston-Super-Mare last week as the children wanted to ! Having all these good times just makes me greedy for more, so please don't burst our happy bubble.