Archives: Family

Boxing Day starts slowly with an 8.30 alarm call upon which I find K still sound asleep despite claiming to be getting up at 8am to shower and wash her hair. I nudge her awake and we realise her alarm failed to go off, largely due to a failure of being set.

Devoid of any major urgency for the day, she ambles out of bed and into the shower while I sit in bed and read awhile until she’s done, when I get myself up, washed and dressed and we head down stairs. I grab coffee, K tea, and Mama D cooks us up some French toast and bacon for breakfast to sustain us on the drive to Ipswich to catch up with my folks.

We load the car up with bags of gifts from yesterday and head off, stopping in at the flat on the way past to drop some bits off and pick up the various bits we forgot, like my swimmers, and some extras we need having arranged to stay another night after tonight, rather than shoot back tomorrow night.

We eventually leave MK around 11.30 and arrive in Ipswich after an amazingly quick and unproblematic run between 12.30 and 1. Once there, I unload the car and say my hellos to the fam and to my Godfather and his fam, plus the other guests at the Boxing Day lunch, a work colleague of G and his family. I’m slightly embarrassed by the familiar way his daughters greet me as I have no recollection of meeting them before, but they seem to know me instantly. I’m sure they noticed, but we still ended up all getting on really well.

After a chill and a chat, we hit the dinner table for a cold-meat and salad lunch which we crack through. The wine on the table in five separate decanters is from a single, epically-sized 5-litre bottle of red on the side. I forget to look at what it is, but hate to think where it came from and what it cost.

After lunch we head up to the cinema room to play with the newly-installed Wii Fit on the giant screen – it’s an amazing experience which could only be bettered were I to have any kind of balance whatsoever.

A little later in the afternoon, once the dark has drawn in, we all change into our swimmers and hit the pool. The outdoor pool. Swimming outside in England is strange enough at the best of times, but on Boxing Day in the middle of winter it’s straight-up surreal.

We mess around and throw balls to-and-fro across the pool into the inky, steamy blackness where we hope to find a person to collect and return the ball and then start playing “toss the ball at the girls in the jacuzzi” which is fun for a while until I managed to nearly knock Mum out with a badly-aimed and over-powerful throw. The games cease.

I swim properly for a little bit, but am not feeling my fittest, filled as I am with nearly a week’s worth of gourmet over-indulgence, so settle in for a quick jacuzzi before calling it a night and showering, dressing and grabbing a beer.

Post-swim we all sit around nattering, drinking a little more and enjoying the chlorinated glow of the night’s festivities. The others leave sometime after midnight and we all hastily call it a night to get some rest before tomorrow.

Christmas morning starts early-ish (although later than anyone with small children, I’ll wager) at around 8.30 when I wake to see K staring at me eagerly waiting for me to wake up to start our day. K is somewhat like a small child at Christmas, being very excitable and extremely cute.

We lay in bed and open our “stockings” and the first signs that I’m spending my first Christmas away from my family creep in – our family use hanging stockings (or football socks at a push) whereas K’s family use small bags to fit the stocking presents in, meaning you can fit bigger and – frankly – cooler presents in. No more packs of pencils, chocolate coins and a satsuma (although I did miss the fruit), in come books, DVDs and other enjoyables. But it’s still a bit odd.

We get up and head downstairs, greeting K’s Ma and Pa with the usual Merry Christmases and such before settling into a gorgeous cooked breakfast with the customary bucks fizz. I usually skip the booze, but this morning I join in and it’s not as horrible as I remember it.

The rest of the morning is spent helping sort out the necessary bits and pieces – clearing and laying the table, wrapping the family-custom table presents for everyone and sorting out the last-minute bits and pieces for cooking.

Mid-morning I get a call from Mum and Dad, who are in Ipswich with my Godfather, just before I’m about to phone them. They’ve just heard from
my bro and are happy that he’s managed to make it to a phone (or at least to dig out the Sat phone). He’s had a pretty rubbish Christmas Eve, but is looking forward to the carefully saved Pot Noodles for Christmas dinner.

At the end of the morning, Bro 2.2 arrives with family in two, one of whom is suffering from a heavy cold, which means I’m forced to keep an unfestive distance. We crack our first round of presents with them (another difference from my gang, who would have torn into them all by now) and appreciation is shared all round.

They head off after a while so they can get their eldest onto his Moto-cross bike which Father Christmas (and the Birthday Fairy) brought him before dark.

We continue chilling/working on the room/table while Mama D cooks up a storm in the kitchen. Mid-afternoon Bro 2.1 arrives with family in tow and we sit down to a cracking Christmas feast.

Post-dinner we all repair to the lounge to tear into our gifts and celebrate in style. The kids, by this point, are starting to feel their 5am wake-up and getting sleepy, but they behave impeccably, if somewhat quieter than usual.

Once they’ve all gone and we’ve cleared the detritus, we settle in front of the telly to veg out and try not to fall asleep before a sensible time in the evening. We watch the new Wallace and Gromit and the Xmas Strictly then end up sitting through most of a random out-takes program before finally dragging ourselves up to our Christmas bed around 10.30pm.

It’s always weird seeing what other families do at Christmas and today was a little on the odd side, but at the same time it was lovely to do things a little differently for a change.

Just a day to go till the big 2008th birthday of little baby J, the dude that started it all, in more ways than one. Also the dude that finished it all, which is odd. As well as being the dude that landed in the middle of it all. All things to all people, I guess.

We were up, again, ridiculously early at 8am (it’s funny how your perception of early changes when you aren’t being forced into 6am starts) to get ourselves ready for the shift across to Deanshanger and all of K’s immediate family.

My first job, irritatingly, is to head over to the other side of MK to fetch K’s present, which I’ve been messed about on first by the initial website I ordered from, then by the courier company I’d paid extra to get delivery to me before Christmas as I didn’t want this precise situation to ensue. Still, it’s not rocket science to get sorted and I’m home half-an-hour later in time to wake K with a cuppa and kick her (lovingly) out from under the covers.

We shoot across to K’s GP to get her her second Hep B jab, a necessity brought on by the likelihood of her working in dodgy environments within the NHS (and that’s just the offices), and she also managed to wangle a ‘flu jab that had meant to have been done much, much earlier, but better late than never, I suppose.

I giggled, not very kindly, because I’d had a ‘flu jab earlier in the year and not been able to sleep on the arm that I got the shot in, and now K had managed to get both arms shot in on the same day – tonight was going to be fun!

We scrambled back home to finish off our wrapping and packing – well, I had to finish (read: do) my wrapping, since K is far more organised than I am and had done all of ours and all of hers, but couldn’t really be left with mine to do for her as it’s somewhat prone to spoiling the surprise.

All set for a cracking Chrimbo, we shoot to bro number 2’s (or is that 2.2, or 2.1 – how do you count twins?) place to hang out with the kids and for K to attempt to work them into a pre-Father Chrismas-visit frenzy, which she ends up proving unable to do thanks to their already way over heightened excitement levels as it is.

We chill with them for a while until they have to go out for festive fun in the neighbourhood and head up to her ‘rents place to unpack and chillax for the evening. On the way, we pass them walking down to Bro No 1’s new house that they moved into last weekend (awesome timing on their part, eh?). We tell them to jump in the car and we whizz round to the new place and peep it out.

It has to be said it’s absolutely gorgeous – the first new-build I’ve seen in a long while with large, airy rooms, a warm, homely feel and a garden larger than a postage stamp. It may be that, due to work movements and such, they only end up being there for six months (they’re renting it while they assess their options and settle into new routines), but it’s a great place to be and more handy for the kids’ school, too, but still in the village.

We hang out there for a while, playing board games and – for the first time in donkey’s years – marbles with the kids until we realise we’d be better off out of their hair as the matriarch has to not only prepare for the imminent Santa-arrival, but also cope with all the usualy 3-day-old move unpacking and sorting.

Back at the ‘rents, we show K’s mum a short film a friend of mine made, which has her in tears and makes K feel terrible and me feel worse because K at least had the excuse that she didn’t realise it would upset her mum, whereas I knew full well it’s too sad a movie not to illicit tears from her.

While we crack on with Christmas prep, finishing off bits of wrapping and peeling sprouts, we are invited back down to bro 2.2’s place for a beer, which I opt not to go for so I can drive K around the village and stop the cold going to her legs, which would pretty much ruin the night for her.

After catching the Christmas ep of Gavin and Stacey, the first ever Gav ep that’s made me laugh out loud, we head back up to the ‘rents and grab D to take her with us (or for her to take us) to the midnight service at the village church.

Midnight is a traditional thing for my family to do together on Christmas eve whenever we’re at home and I’d not managed to make it thanks to illness for something approaching three years if my memory serves. That, combined with not having my ‘rents around and thinking of my bro out in the field in some unknown part of the world got me really and truly upset – and in a church full of people I don’t know.

After the service, I’m feeling very reflective and worried about my bro and the situation he’s in – which I have to acknowledge I know almost nothing of, for security and operational reasons. I drop a text to Mum and Dad to tell the I miss them and I go to bed with a heart far too heavy for the festive season.

The Christmas roller coaster continues on it’s ever-hastening track with a visit to Southend to see A&A and Sebby G, the newest addition to my Mum’s side of the family.

Try as I might (even with the might of Google) I can’t figure out what relationship he is to me, though. What I’m almost sure of is that he’s either a second cousin or a first cousin once removed. An initial Google search turned up a definition making him my second cousin, being a child of my first cousin. The mighty (but often incorrect) WIkipedia, however, suggets the child of a first cousin as being my first cousin once removed, by dint of the fact that our shared relation is one-step removed between us (ie, my shared relation with my Cousin is my Grandfather, and Seb’s Great-Grandfather), which makes more sense to me, although frankly, it’s way too early in the morning to be calculating all this.

Anyway, he’s the newest edition to my extended clan and whichever way you look at it, he’s awesomely cute.

We were up at 8 for the drive, which didn’t take us as long as expected, even though it involved the M25 on the last “trucking” day before Christmas. Arriving around 12, we all immediately set about scrapping over first dibs on Seb, but were scuppered by his mother handing him straight over to my mum. Although, frankly, she’d have got him first anyway, she could beat any of us in a fight if she wanted cuddles.

Taking my lead from last night’s Ebn cuddle order, I swept in for seconds after mum, but managed simply to cause the little one to burst into tears, being rescued by K, who shut him up immediately with some random female witch-doctor power that she has.

Lunch was a separate whole bundle of fun, enjoying as we did a Raqlette (which K will no doubt sweep in and spell-check for me when she reads this) which is essentially a really easy way to cater for groups as it involves cooking your own food in a delightfully fun way. There is a grill element covered by a large slab of granite on which you cook strips of meat, veg or whatever else takes your fancy, while underneath you have a mini-frying pan to slip under the grill to melt cheese or fry quails eggs, as is your wont.

The only issues with this style of dining are that you never know when you’ve eaten too much until it’s too late and, from my perspective, it’s almost impossible to keep track of how much you’re eating and thusly how many Creon to take in order to make sure it’s all digested.

Once we’d laughed our way through a cracking meal, we all settled our stomachs by making arses out of our selves on the Wii-Fit, a ridiculously stupid device that uses your body-weight on a board to move the characters in a computer game.

I soon realised it wasn’t my day when I tried out the Yoga challenges and not only couldn’t even manage a single press-up, but end up almost flat on my face from trying to be a tree. Balance is not my forte.

By this time, after his post-lunch nap, Sebastian was being passed around the room again and this time turned the opposite cheek, crying at K and falling asleep again as soon as he came to me. Clearly an indecisive kid, although he certainly knows when he wants to sleep and when he doesn’t. He managed, through the course of the Raqlette, to sleep through two smoke alarms going off directly above his head.

By 7pm we were all pretty shattered and I still had a 2-hour plus drive ahead of me, since I’d been dedicated (or foolishly volunteered to be) sober-one for the day, seeing as we had to use my car anyway following a minor mishap on my mother’s part in Dad’s car.

On the road just after 7, we eventually got back to our humble little homestead about 9 and pretty much directly hit the sack. I love Christmas.

Who’d have thought that going to a theme park in the middle of winter could be fun? I suppose it helped that it wasn’t totally freezing, just a bit on the nippy side. I think the thing that really makes it, though, is the company you keep on days like today and I couldn’t have had better company for keeping the place cheery and fun than my Godson whose idea it was to go in the first place.

Gulliver’s Land in MK is the place I took him the very first time we went out together on our tod. He was probably not a lot older than 5 or 6 and Gulliver’s caters perfectly to that age, with a large selection of Alton Towers-lite rides that are fun and a little scary but largely all appropriate for the post-toddler age group.

Now pushing 11 and with me lolloping up through my 20s it occurred to me that it might not be as intensely amusing as the last time we went, but if anything we had more fun today than we had last time, despite the larger half of the park being closed off due either to the wintry weather conditions or the low levels of staffing.

We managed to amble around the park for a few hours of festive fun, queuing for almost nothing and having a whale of a time on just about everything (altough the Might Mouse roller coaster was neither mighty nor really a roller coaster so much as a large figure of 8 with a train on it). In fact, many of the rides were incredibly dull, but I haven’t laughed so much and so solidly for quite a while.

Dodgems with only two people is an interesting experience, as is riding the same mini-whirly-pirate ship four times in a row, although ride of the day has to go to the back-to-back teacup rides which left us both staggering around the park like Santa getting off his sleigh at the end of a globe-trotting 24 hours of non-stop sherry and pies. Mind you, if we’d had the pies they wouldn’t have been safe in our stomachs (images of the Red Dwarf “food escape!” slipping into my head…).

And, ironically for a theme park – which are, at the best of times, renowned for their escalated prices within the boundary walls – we actually found the city’s cheapest pick-n-mix, which delighted not only the two of us, but also K when we arrived to pick her up from work with her own little bag of goodies.

After a quick cuppa back home, we then assaulted the arcades in the snow dome and whittled away even more time and pocket-heavy change doing everything from shooting zombies to playing mock-basketball before running Li’l R home.

We made a quick dash to Tesco for a few last Chrimbo bits before heading across the road from ours to see a friend and her mum for a little festive cheer with mulled wine and assorted Christmas treats (pigs in blankets, anyone?) and to have cuddles with not-so-little Baby E.

Having wedged herself in for firsties on E this evening, I have taken the executive decision that K has forfeited her rights to first cuddles with Sebby G, my cousin’s newborn, when we see them tomorrow. Although I suspect I may end up in a fist-fight with my mum over him, I know that I have dibs on first cuddles between us to at least.

I can’t wait!

PS – today also saw the internet debut of Live Life Then Give Life’s latest video piece, which I directed, shot and edited to highlight the varying attitudes to Christmas from different transplant perspectives. You can check it out here.

It’s been a really strange day today, giving me a surreal, 3rd-person insight into how my life has changed in the last 13 months.

I was out for the day filming with Emily for the Live Life Then Give Life website – part of our new media project to add even more impact to our life stories by getting the people in question on film.

First port of call was our fabulous advocate (or Fabocate, if you will) Jess, who has been waiting nearly 3-and-a-half years for a double-lung transplant and is now way beyond the “worrying” stage of the wait and headed rapidly downhill. Sitting an interviewing her at her home in Kent, I remember how similar I was last year just weeks before my call – I couldn’t really move around, everything was a struggle and, mentally, I was right on the verge of giving it all up.

She also made me realise, however, just why people find people with CF so inspiring. As I sat and watched her making light of her situation while pausing for enormous, breath-stealing coughing fits, I saw in her something which I suppose many people once saw in me – a determination not to be beaten by something we’d battled for years. More than that, though, I sat there and wondered to myself how on earth I did it.

At the time, you don’t really have a choice, you just get on with it, but looking at it from the outside yesterday I could see just how much hard work it is to stay alive and keep fighting and I was blown away by Jess’s willpower. She’s a phenomenal girl and I hope and pray that she gets the call she so desperately needs now.

By way of total contrast, we left Jess in the mid-afternoon and traveled to Epsom in Surrey to talk to another one of our advocates, Lisa, who is celebrating, like Emily and I, her second Christmas post-transplant. In fact, Lisa, Emily and I were all transplanted in 2007, spreading ourselves through the year – Emily first, in January, Lisa later on and then I brought up the rear in November.

Talking to Lisa I was given chance to reflect on the changes that happen between the state we were all in pre-transplant and the freedom and joy we all feel now it’s behind us. We’re all incredibly lucky people, but it made me realised even more strongly than usual just why we all work so hard to raise the profile of organ donation – this life we’re living now is amazing, remarkable and truly miraculous, but we still lose over a 1000 people who need a transplant every year. That’s more than 10% of the people who are on the waiting list.

It doesn’t have to be like that – we can all help to change it by talking to our loved ones about our wishes and making them talk to their friends and their families and to let everyone know that giving someone the gift of life when you no longer have yours is the greatest thing anyone can do for another human being.

Sign up. And Talk.

Today’s been a productive day (alongside yesterday) in getting started on a new writing project whilst polishing an old one.

A previous screenplay of mine on which I’ve been sitting for a while has come back out of the draw for a once-over.  I’m impressed actually with how good it is, but far too aware of it’s limitations.  When K first read it, she gave me some great notes on it, which I’m now about to implement, along with a whole raft of changes I’ve identified for myself in my latest read through.

At the same time, I’ve been hit by one of those rare ideas that comes into your head almost fully-formed.  It’s a complicated story (or rather group of stories) that will take some time to work into a coherent structure, but I’m really pleased with the concept, which I think could be really powerful.  And, without being too pessimistic, cheap to shoot as well.

On top of those, I also wrote a short film script this morning as well, which has been floating around in my head for far too long and finally found itself a place on the hard-drive of my computer.  It’s actually a really simple story and a really easy shoot, so I’m in the process of working out if there’s any way I can fit it in before Christmas.  I guess as a little present to myself or something.  It would be nice, but it does involve finding a cast of one guy and one girl who are free for a day to shoot in MK sometime next week (possibly Thursday 18th), so we’ll see what happens.  I’m not getting over-excited about it yet, but it could be cool if it comes off.

Don’t worry – I’m not about to spend another 500 words harping on about how brilliant the world is and everything that’s in it and how great my life is and how I love everything I can do that I couldn’t do before (I’ll probably get back to that tomorrow…).

No, this post is about the movie of the same name, the 1947 Frank Capra classic with James Stewart and that lady that K tells me went on to be in Oklahoma!

Our local Cineworld, despite having been kitted out with state-of-the-art digital technology as part of a Government scheme which was supposed to see more and more independent films hit the high-street, has a pretty poor record on showing anything that’s not a blockbuster.  So it was not only very refreshing, but also amazingly fulfilling to be able to go and see – for my first every viewing of the film – It’s A Wonderful Life on the big screen.

The flick is one that K likes to watch every Christmas without fail – it’s a perennial favourite of hers.  Last year she introduced it to my family, but over-dosing on immuno-suppressants as I was this time last year, I was upstairs trying to sleep and not throw up at the time.

So when we both heard that Cineworld was screening it, we knew we had to go.

The delightful thing about old films is how they take their time in telling their story.  They’re happy to wander and meander and see where they get to before the main bits kick in and they’re happy to settle for periods on minor details which nowadays would be incredibly plot-specific, but then were simply interesting things they wanted to show.

That’s also partially their downfall, though, too.  For no matter how much I want to watch some classic movies, I still find myself getting fidgety if I’m in an environment with lots of other things going on.  If I’m going to watch an old film, I need to be able to turn off my phone, close the curtains, turn the lights off and focus 100% on the screen and let myself get sucked right in.  It’s increasingly hard to do so in the modern world, though, so I fear I’ve not seen as many classics as I should have for such a profound movie lover.

It’s A Wonderful Life had all the elements to be a really disappointing film.  After all, how often have you heard someone rave about a movie for days on end and then when you see it there’s nothing there to back it up, or maybe it’s just been over-hyped in your mind.  This, however, was everything K said it was and more.  Clever, funny, emotional and kind-hearted, it’s the very definition of a feel-good Christmas movie, but not in the modern sense of garish colours and broad comedy – this is a movie to get swallowed up in and one which leaves you wishing you lived in the age when a man wouldn’t dream of leaving the house without a hat to tip to the ladies.  When women wore nothing that wasn’t immaculate and beautiful and when Hollywood was unafraid of the soft-focus close-up.

If Cineworld don’t have it back again next year, I swear I’m going to launch a sit-down protest in their popcorn machine.

Today was both an emminently enjoyable day and a massively frsutrating one.

A while back, as you’ll no doubt have noticed from the banner on the right of the page here (unless you’re reading this through in the archives in the middle of 2011), I signed myself up to take on this years doitforcharity.com Santa Run through Greenwich park.

At the time – about 7 weeks before the run – I thought that a small, fun 5k could be just the right way to ease myself into the physical challenges I’ve set myself for the next couple of years.  I’ve developed a bit of a master plan that I’m not going to la out on here because I’ll only fall foul of it at some point and feel lousy, but suffice to say that a 5k before Christmas seemed to be a good way of easing myself in.

Then came my port op at the end of last month and truly knocked me back.  Not physically – or at least not in my chest – but the pain in my shoulder and the general disablement it brought caused me to have to stop running.  I figured that even having missed a week’s training I’d still be good for the run, but it appears that my shoulder protests too much.

Any kind of movement of the shoulder, particularly harsh, juddering, running-style movement, has been really painful and – mindful of the fact that I’d have to operate a car all the way home after the event – I had to take the disappointing decision to “drop out” of the run.  I say drop out, but that’s really not true, I just ended up walking it instead of running it.

I was, frankly, really bummed about it the week leading up to it – the whole point of the exercise had been to give myself a physical challenge to round of what’s been an amazing twelve months – but as people kept pointing out to me, it’s a big step forward.  I just wasn’t so sure it was, after all, I’ve done a lot of walking since my op, not least back in October when I not only walked 5k, but did it with a video camera on my shoulder to shoot Nelly’s World’s Biggest Walk.

It was only once I was actually walking around the park, breathing in the freezing cold but deliciously crisp winter morning’s air that I realised what a difference the last year has made.  At this point 12 months ago, I was just learning to wobble around the ward on two very over-sized legs in between bouts of dialysis to keep everything under control and on course for a Christmas release, a date which seemed to be looming without signs of improvement.  To be wandering freely through the park today, holding conversations and pushing Nelly up a really steep hill (until her family came to a perfectly-timed rescue) is a miracle beyond words.

I feel like I spend every post on here at the moment in a moment of thanks to my donor and their family, but if it wasn’t for them I’d never have had the chance to do all of that.  And I’d never have seen my Great Cousin born last night, either – so thank you all, whoever you are.

Haven’t been up to a whole heap today, but got incredibly excited this evening when I got a reply to an enquiry on my cousin’s health introducing Sebastian George Phillips to the world.

(That’s not to say I didn’t know he was due, which is kind of how the above sentence reads back, actually.  In fact, the text was checking on Baby Mama’s state of annoyance/concern/frustration/happiness at being nearly 2 weeks overdue).

7lbs 14oz at just before 9pm this evening I became another Great Cousin.  Obviously I’m already great, but now I’m Great again!

Congrats, guys – many happy years of fun and frolics with the littl’un.