Birthday Reflections

  

       

      

Yesterday it was my birthday, I'm not really one to go all out on my own birthday. As a child they were always good, but as an adult less so. Over the last couple of years there have been a couple of bad ones, 2010 S forgot, no cards or gifts, that felt horrible, obviously his mind was with his mistress. Then in 2013 we were at Gosh and Eloise was diagnosed with rejection for the second time. Felt so sick and worried about her, so birthday thoughts and cake were forgotten. 

So here I am another year older but no wiser ! I'm wondering when I'll feel "grown up" ? I look at my life and the responsibilities I have, my four dependant children, my home, my finances and my job etc and think how did I get here, I'm not old enough or adult enough for all of this ! Stupid I know I'm 46 now, creaking ( quite often ) nearer to 50 ! 

       

        The number itself doesn't worry me, it's just that a number, I feel no different today than I did earlier in the week, I didn't suddenly age.....it's just a slow decline. Do you remember waking up on your birthday and looking in the mirror to see what you looked like another year older ? Being excited to see yourself at the ripe old age of 7. I can't say looking into a mirror thrills me these days, post make up not so traumatic, pre foundation scaffold quite horrific . There's something to be said about not putting my contact lenses in too soon, blurred reflection. I have just reached the going ever so slightly long sighted age, thankfully I can sort that out with varied focal contact lenses, phew. I love sunglasses but I'm not keen on glasses preferring the normal surround vision I get from my lenses. 

    I fear I will be one of those old ladies that falls over and breaks her hip, I think I trip up nearly every time I go out. I wonder if I was a child again whether I'd be diagnosed with dyspraxia ? I have always been clumsy. So maybe I should start some kind of calcium supplement ? I'll put that on my to do list, I often scan the bottles of vitamins and minerals in Boots then I walk away empty handed. Too confusing an array ! 

    I don't think I have ever been one of those people with life goals, ie before I'm 25 I want to be engaged, by 27 married, first child before I'm 30 and so forth. So I've no idea where I thought I'd be at right now. I doubt I'd have said divorced, but then if you thought that you'd never bother getting married . Otherwise I guess life is in the right place. I expect I'd have thought I would have achieved more of a nursing carer. It's hard to know whether I gave up on career progression because of what happened to Eloise or if I never had it in me anyway. Perhaps a bit of both. I wonder if I should have chosen a different career pathway, I guess I was shoved into nursing post school work experience. Don't get me wrong I've met some amazing people and there have been plenty of rewarding times but now I'm unsure what to do next. It's when I think I've still got another 20 years to go, can I keep on nursing ? On the other hand I know nothing else I've been nursing since 1989. I have no other skills, some of them will be transferable skills I guess. 

     My life on the whole has been good, I'm sure if I didn't have the worry and the stress of Eloise's transplant I'd fret about something else. We all have worries don't we. Just with health it's pretty much out of your control, especially when there's no cure and treatment causes more issues. After never getting a cold while on azathioprine Eloise has had a few on MMF which is a shame. Like she said though a cold is better then rejection, such a wise child ! She's been off school for two days battling another virus, thankfully she's better now. I try to remain happy but it's a pretty constant worry with Eloise. She's not made my hair go grey yet , well the blonde is covering up the white. 

  How can I worry about getting older when it's something denied to many ? It's a privilege isn't it, every day a bonus. No one knows what's around the corner, if we did we'd probably sit back and give up. When you are confronted by a truly difficult situation head on you fight it, it's in everyone of us the passion to survive. So I'd better get a move on and prepare for battle. Today's battles should just be small ones......anyone want to take Henry shoe shopping ?

      

                                      

The Wait

Waiting - 

                       

   What type of person are you when you're waiting for something to happen ? 

Are you inpatient ? 

Do you remain calm ?

Are you excited ? 

Are you scared ? 

Do you remain positive....hopeful ? 

What if the wait is prolonged with no end time ? It could be days, weeks, years or never as time could run out. 

Could you live like that ? 

This is how it is for those living on the transplant list.  They are in limbo , lives on hold, not just their life but the lives of their close family members too. Not only are they waiting at the same time their health is deteriorating for some the deterioration is slow for others its rapid leading to multi organ failure and they then need hospitalisation and life support. Then the family becomes split. This then makes the wait even more unbearable . Also you know time and options are running out. It's a daily battle to keep the person "well" enough to receive a transplant. 

My family was lucky we were spared the wait as Eloise was transplanted 24 hours after being listed. From diagnosis to transplant was a short sharp three weeks. No time to think too much, to ponder the ifs , whys and maybes. I didn't appreciate then how lucky we were, why would I things were pretty hideous. Now I know we were spared the gut wrenching wait. I know when we were at the Freeman pre transplant they asked if we'd like to meet another family, one with a post transplant child. We declined, deciding we didn't need to learn about something that might not happen for us, an organ might not have been available for Eloise. 

Now I've been a spectator while other families have waited for their loved one to have a transplant. It's hard to find the right words to say sometimes, to give words of encouragement and hope. It's hard watching little ones fight so many battles to survive, children the same age as Eloise was. Seeing them covered in wires knowing only another family can save them by donating their child's organs. No one wants to think of a child dying it's not the right order in life. The wait can have other implications , daily life comes with expenses . People have mortgages, homes that need maintaining, bills to pay, families to feed etc. This just adds to the worry. 

It's not as if a transplant can be scheduled in , it must be hard waiting for a cataract operation or a hip replacement both debilitating but you can be given a date for your procedure. You're not only waiting for someone on the organ donor register to die and their family to say yes. You're waiting for your match. Blood Group, Tissue type, organ size etc all have to match and you need to be top of the urgent list, oh and stable enough to withstand the operation. The odds just seem stacked against you. Thankfully for most of my #transplantfamily the call comes in time, as a group we've been lucky but occasionally luck runs out. Recently we have learnt of Mr P his wife joined our group after he passed away waiting for a transplant call that never came. We also followed baby Willow's story and sadly she too passed without receiving a heart transplant. It makes us realise how lucky we have been , lucky that our loved one received an organ just in time. 

      So thank you to all the amazing donor families who have spared us grief when they were grieving. I hope you all know how much you mean to us. We remember your loved one and live life to the full, looking after the gifted organ. 

                        

    So think about it decide if you or a loved one could survive the agonising wait knowing that 17 million people haven't made their decision about organ donation. Knowing only 31% of people in the UK have signed the organ donor register. Knowing 3 people every day die waiting for an organ, real people not just statistics. I'm sure if someone you loved needed an organ transplant you'd be here campaigning with me, you'd see how desperate it can be . You'd see how frustrating it is that 96% of us agree with organ donation in principle then for whatever reason don't bother to sign up to the register. I just cannot understand why. Dead is just that , why not spare someone else death when your own death is inevitable ? Please help me get more people on the register #onemore person can potentially save 9 lives. I know I've already got 6 people signed up this week so a few more would be great ! 

   Eloise's story could have ended right here 9th June 2002 on a ventilator at The Freeman Hospital in Newcastle. 

       

But her story continues ,13 extra precious years, and each year is another chapter.........