A Year

Six years ago to the day Sally and I were spending Christmas Eve in Queen Charlotte’s maternity hospital. Close to 2 months after being born Rhys was still in the special care unit of the hospital.

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We’d hoped he’d be home by Christmas but it wasn’t to be. Though in many ways it would appear that it wasn’t a great Christmas I realised afterwards that in some ways it was almost a privilege. That’s not because lavish gifts were being exchanged in the hospital – more that the adversity of the situation that many families were in was galvanising.

The hospital staff made so much effort to be cheerful and make Christmas day different there was a very special atmosphere on the unit. It felt like you were being given the chance to share in a purer form of goodwill than you would ever normally experience. And as the decorations were cleared away in early January Rhys was well enough to come home.

Another 4 years to the day we were back in the same hospital welcoming Owen to the world on Christmas Eve. Though he was a few weeks early it was a lot more straight forward.

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Fast forward a bit to the decorations being cleared away at the start of 2012 and my head was quickly filling with trying to work out how we’d pick our way through this year.

There seemed to be an implausible number of things that had to fall into place for Rhys to have his implant and SDR surgery and recover from both within the year. It still bends my mind that within weeks of a surgeon drilling through his skull to insert his cochlear implant he was back in theatre having nerves irreversibly cut in his spine.

If you added in the possible risks associated with the surgeries I came to thinking that if we got to Christmas this year and we were all just alright, and nothing had gone wrong, then that in itself would be worth celebrating.

And if we were to get to this Christmas and all the surgeries had been successful – well, I’d have taken that in a heart beat. So I have to keep reminding myself that that is what has happened. It feels like we’re ending the year in a pretty good place.

Whilst we’ve been the ones stood in the middle of all of this, it’s pretty clear to me that we didn’t do it on our own. It’s not possible to list the names of everyone that has contributed to this happening. There’s just too many doctors, nurses, therapists, co-ordinators, teachers, family members and friends that have helped along the way to get Rhys to where he is.

As I’ve said on here before, no amount of progress is too much and Rhys’ recovery is an ongoing process. For example, weaning Rhys out of his splints is going to take more time and Rhys and he still takes a fair few tumbles. That’s all balanced off though by Rhys doing his 25m swimming badge last week and having moments where he surprises me with his ability. Here he is walking down a few steps at his school unaided.

If you’ve read any other pages of this blog you’ll know I like a quote and whilst sport can often provide memorable ones, politics is a rich seam as well.

Here’s a quote that’s often attributed to one of my heroes, Nelson Mandela. Whether he did or didn’t say it in his early speeches as South Africa’s President doesn’t matter too much. It’s a good line regardless. The sentiment of it makes me think about Rhys, his place in the world and the way that his progress might impact on others. Here it is.

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us.

We ask ourselves, Who am I to be brilliant, gorgeous, talented, and fabulous? Actually, who are you not to be? Your playing small does not serve the world.

There’s nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. And as we let our own light shine, we unconsciously give others permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.”

Merry Christmas everyone. Here’s to a good new year as well.

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The Tipping Point

A few years ago there was a book written by Malcolm Gladwell called ‘The Tipping Point’. I kept hearing about it and wanted to know what the fuss was about so I got a copy.

The book sets out his theory as to why some ideas catch on – whether that’s in fashion, business, music or health – and why other ideas splutter and fail. What is it that takes things to ‘The Tipping Point’ where a trend suddenly explodes in popularity?

Reading the book my mind would flip from thinking ‘this book is bloody brilliant’ to feeling Basil Fawlty would call it ‘Specialist Subject : The bleeding obvious.’

Either way the term tipping point started to crop up in articles about sport, politics, business, everywhere really, to describe situations where after a certain (tipping) point things get easier.

Since Rhys had his SDR in the summer I’ve thought several stages might be the tipping point – that things would suddenly get easier for him and flow a bit more.

As the autumn has progressed I’ve started to think that there probably isn’t one. That’s not because things have gone wrong, more the realisation that the recovery from SDR is a gradual process achieved day by day, inch by inch.

The temptation when posting on here is always to just post video clips of Rhys doing well. Whilst I’m the first to celebrate his triumphs doing that might give the impression that the recovery just happens, which isn’t really the case. There’s a fair bit of grind to it which largely explains the absence of posts.

It’s now 8 weeks since Rhys had surgery in St Louis on his heel cords to lengthen them and it seems very, very distant. In fact, if it wasn’t for the scars on his calves I’d swear it hadn’t happened at all.

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We flew home just a few days after this round of surgery and whilst it was good to be back at home it did have it’s drawbacks. Rhys was once again less able than he had been and being in familiar surroundings seemed to exaggerate that lack of ability. Not being able to climb the stairs at home was much more frustrating than being in a wheelchair in St Louis.

That, combined with the tiredness of travelling, wearing ankle splints and the mood swings the pain medicine caused meant that he wasn’t very happy – especially with me.

It made me realise that all this frustration had happened on our first trip to St Louis but it had largely passed by the time we returned a month later – in a way we’d left all the frustration in St Louis – whereas this time we’d brought it all home with us.

Another similarity with our last trip was that as Rhys’ pain passed, his ability came back up and with that his confidence began to return. That confidence combined with treadmill walking, stretching, splinting, cycling, horse riding, swimming and 3 or 4 physio sessions a week has had an impact. Here’s a video clip of him on the treadmill last week.

Out of that list of activities it’s hard to know which is having the most impact on his recovery. All I know is that if you try and do all of them Rhys improves – do nothing and his old walking patterns will start to emerge.

Listing all the therapies we’re doing reminds me of a quote I read over the summer from David Brailsford. He’s the head of the British Olympic cycling team and put their success down to ‘the aggregation of marginal gains’. Though it’s a nerdy phrase I quite like it.

The idea is that lots of small improvements (such as the electrically heated “hot pants” that kept the leg muscles of Chris Hoy warm between the races, inspired by Formula One’s tyre warmers) add up to give you an advantage.

Now even though Rhys isn’t wearing electrically heated underpants to school (not yet anyway) that idea of making ‘marginal gains’ seems closer to what we’re doing than any ‘tipping point’. Day by day we make tiny notches of progress which over weeks and months should add up to something.

Every now and again Rhys unconsciously puts everything from his physio sessions together. He’ll walk out of a shop and his arms will drop to his sides, his posture improves, there will be little in toeing, a nice ‘heel toe’ gait and you think ‘that’s it, that’s it, keep it, keep it’ and then 10 seconds later it’s gone again. You kind of get a glimpse of how well he can make his body move before the old habits return (but still better than pre surgery). Have a look at this clip of him walking in the gym last week.

I hope that this post doesn’t sound like whinging – it’s not intended to – it just feels like only posting a clip of Rhys walking nicely without an explanation would be a bit deceiving. I feel like I have to acknowledge that the rehab process is every bit as hard as I thought it might be. In order to do all the physio sessions we’ve had to call in a lot of favours from friends and family to help look after Owen. There’s also been countless times I could have chewed the steering wheel off the car when stuck in traffic on the way to and from sessions. And there’s the off days where Rhys will fall several times between getting out of the car and walking through the school gate. So while you know you chose to go for the surgery the repetition of the recovery can be quite tedious – I know other SDR families feel the same.

In all the guidance notes given to us about SDR we always knew that the recovery happens over a 2 year period, with the first 6 months the most difficult. Maybe you unconsciously hope that you might find a shortcut or a loophole to jump through so you can accelerate the process. In truth, the timeframe given by St Louis is proving to be pretty accurate and Rhys is doing well. Here’s a video clip of him on his scooter.

So for all the tiredness, frustration and traffic jams we haven’t lost sight of the fact that Rhys is making rewarding, steady progress. And for that we are very, very grateful.