Earlier this week I wrote a short post about the benefits of a baby monitor in supporting life with my Dad who is terminally ill. It allows him to be in bed but still remain connected to my Mum, myself or anyone else who is at home looking out for him. There were a few downsides that I’ve discovered since – notably the constant requests for cups of tea that make you jump as they emanate into the atmosphere; some interference with the wifi when I was trying to use Skype; and it also has the risk of fuelling my own paranoia. Any of my mates who have had me babysit (especially when they are uber little) know that I doubt the tech, and if I dont hear anything for a while I end up going and watching their precious bundle of newbornness to see if their chests are rising – this week I ended up doing the same with Dad; stood in his doorway staring at his chest. I guess the reality is that this is nothing to do with technology, it is to do with the fragility of life and my own need to watch over it.
Anyhow I digress….the other downside of the baby monitor is that it is one-way, it helps us connect to Dad but it doesn’t keep him connected with us, but this does:
Take a bow the wifi enabled photo frame. This thing is amazing, it allows my folks to get photos of their grandchildren, granddogs and of course grandcat; their kids, scenery, cake, whatever. We just take a photo, email it to an email address and hey presto it arrives, usually immediately although sometimes it takes an hour or two. This device is amazing, it has been a brilliant connection for my folks to keep in touch with the everyday existence that goes on, especially when yours isn’t so normal. The last few weeks it has come into its own, Dad has been home from the hospice a week and has barely made it out of bed, but this little gem allows the outside world to come to him. It gives Dad something to look forward to (the symbol on the front lets him know there are new photos waiting), the photos arrive and loop constantly, you can sort by sender or most recent and when all else fails it’s a great, ever changing talking point.
About two and a half years ago my little sister gave birth to my gorgeous niece. It was about that time that I started blogging, partly because I hoped that I’d be able to record what happened in life and give her a sense when she’s older (if she wanted it) of how awesome her Grandad was….at the time I never thought she’d live to be old enough to actually remember her Grandad or know that for herself. Dad had lived with bile duct cancer for two and a half years when she was born and living long enough to meet her had been a significant motivation.
This was the two of them when she was a few hours old in the hospital
If anyone had said then that Dad would get to see her grow into a toddler and maybe even live long enough to meet her younger sister (if medical imaging is correct), I don’t think any of us would have dared hope so, never mind believe it.
Yet here we are, my sister is overdue and is going to be induced next week. Dad has been really poorly over the last weeks and months. About ten days ago he started coughing up blood, this is a new development for him. He had occasionally vomited and has been bleeding internally (which was the reason for the palliative chemo) but never before had this happened. I wasn’t at my folks house but Mum rang to say what had happened and I met them out at the hospital. To cut a long story short Dad spent three days in hospital as they stabilised him, all the while waiting for a bed at our local hospice to become available so he could go there for assessment on the way home. Last weekend there was still no bed available and Dad didn’t want to spend the weekend in hospital (it was particularly unpleasant that week, if you can remember that far back it was sunny, and there was no air on the ward and half the windows had been screwed shut which didn’t exactly help). Dad convinced the hospital palliative care team that he was good to go home and home he went.
We watched the Olympic diving together last weekend, Mum Dad and myself. I think we all shed a tear when the video intro to Tom Daley was played – his Dad was only 40 when he died last year from a brain tumour. He was 40 and Tom D was a seventeen your old lad, training for the Olympics and studying for his A-Levels. He won bronze last weekend and the local paper informs me that he maxed out on his results, with 3 As and A*s, what a success. I am almost (not quite, steady on) but almost twice Tom Daley’s age and I am seriously struggling to get my head around my Dad’s situation still. I don’t think anyone can underestimate the scale of his achievement.
The last fortnight has felt different to any that have gone before. Mum and I were out of kilter (which rarely happens) but meant we weren’t communicating very well. Dad was very, very low and has now seriously picked himself up again, fighting all the way. In terms of lists of things I never thought Dad would live to see, London 2012 was up there too. For all the complaints about us being a nation of fickle slobs jumping on the Olympic bandwagon to become armchair pundits, I’m not complaining, it has seriously helped Dad’s positivity and determination, so #ourgreatestteam can take a bow as far as I’m concerned.
So, here we are. The middle of August 2012. Dad has a matter of days (hopefully) until he becomes a Grandad again. He is also now less than four weeks away from his 65th birthday and a very significant transaction. My Dad joined the Navy as a teenager and worked ever since, until he took early retirement and two months later was diagnosed with cancer. Having worked all his life he is incredibly determined to claim his pension, at least once. Some fairly powerful short term goals going on there.
One of the absolute hardest things about life at the moment is the lack of certainty and structure. The inability to plan more than a day or so ahead. The fear I have to making commitments or booking a holiday. The constant niggle when I try to make arrangements. I’m on standby duty for my sister, she has mates around all weekend and is booked to go into hospital next week but if she goes into labour on Sunday night I’ll be jumping in my motor to get to her’s to look after number one niece while number two niece arrives. As much as I hate uncertainty these days, and hate not knowing if I’ll be called on, for this occasion I’m chuffed. I can not wait to visit a hospital for a good reason and more to the point I can’t wait for my Dad to meet his granddaughter. I’ll make sure when she’s older that she knows what an important part she played, a solid strong motivator for her Grandad to hang on and find some more energy and courage to live a little longer, fighting a hideous disease.
A month or so ago my sister got upset when I rang her because she couldn’t do anything to help. I reassured her then that she was doing more than she realised, she was reproducing, she was carrying a ray of hope in her belly, so much more than I could ever have done. After all its the short term goals, however small and insignificant in the big scheme of things, that provide the moments that make life worth fighting for.
***Update*** My new niece, Phoebe George, arrived last night (19 August) weighing in at 8lb 6oz. I’m hoping to get to meet her the day after tomorrow and will post some photos afterwards. Next goal is for Dad to meet her….watch this space
Baron Pierre de Coubertin, considered to be the instigator of the modern Olympic movement, focused on the possibility that athletic competition could promote understanding across cultures. Coubertin’s philosophy was that competing was more important than winning.
L’important dans la vie ce n’est point le triomphe, mais le combat, l’essentiel ce n’est pas d’avoir vaincu mais de s’être bien battu - The important thing in life is not the triumph but the struggle, the essential thing is not to have conquered but to have fought well.
This is completely realised by two brothers, Connor and Cayden Long from Tennessee. Connor is 9 years old and he competes with his younger brother, Cayden, who has cerebral palsy and doesn’t walk or talk.
They compete together in triathlons, not to come first, second or even third….but to come last and celebrate in competing. Take a look, it’s 90 seconds well spent!
With thanks to Russell Howard’s Good News for alerting the British public to Connor and Cayden’s awesomeness.