Relight My Fire

Four weeks of hell came to an end on Monday. Two weddings and two funerals culminated in Eileidh’s spirit relighting my fire. Before I left the house for the 350 mile round trip to Aberdeen, Jane reminded me that children’s funerals are the worst. With the state I was in, that was the last thing I needed to hear. But I worried for nothing…

Eileidh’s funeral reflected her life. Sure there were floods of tears when a group of primary school pall bearers carried her wee pink coffin into the chapel, it having arrived at the crematorium in a horse drawn carriage, but from that moment on, the day was a celebration of a short life lived smiles better. The city of Glasgow may have created the brand, but Puddles made it her own: Eileidh Smiles Better.

The service was a celebration of her life, with stories being recounted from family and friends, about how a strong willed wee rascal defied everyone, and her disease, with a smile on her face. And Cerys delivered a beautiful poem about her best friend, word perfect. In that moment, Cerys showed maturity way beyond her years. No child should ever have to go through what she has endured these last few years, but Cerys will emerge a stronger, more empathetic young woman through having loved her wee sister.

The service finished with three minutes that brought home with sledgehammer effect that LCFN has made a difference. At our mam’s funeral just two weeks ago to the day, the final act was the singing of The Lord’s My Shepherd. At Eileidh’s funeral, the final hymn, if I dare use that term, was Puddles, played out to the backdrop of the video of her fight on two big screens. I was sat with Claire from Solving Kids Cancer, who I’d previously met at the SKC fun day in Richmond two years ago. We got each other through those three minutes holding hands: but the tears still flowed. Amelie, who wrote and recorded the song in Adelaide just fifteen months ago, got a late pass and stayed up specially on the other side of the world. The photo she sent over of her wee pink party dress lit up in candlelight in memory of the Princess was itself was a touching moment, an LCFN will never forget Eileidh kind of a moment.

I’d set off for Aberdeen with two outfits. I’ve only ever been to funerals in traditional black, but I knew that Gail was planning a Princesses and Superheroes after party as a celebration of Eileidh’s love of fun. When I got there, and followed a giant pink dumper truck into the crematorium, I knew I was overdressed. My other outfit was LCFN, the brightest I’ve got: not a lot of pink on show right enough, but 25 year old branded lycra nonetheless. I bought that shirt in 1992. I did a quick change in the back seat of the motor in the far corner of the car park.

The party lifted my depression and I didn’t expect it. I met friends, old and new, some who read this stuff week in and week out, and some who didn’t even know it existed. But perhaps my most treasured memory was when one of the beautiful Love Rara princesses told me that she reads the LCFN blog every week. Just like when Puddles was played in the service, it was a moment when I thought “maybe this stuff makes a difference after all”. Thank you.

While I was sat downing the coffees to make sure I was wide awake enough to drive home, I explained to Claire that from this point forward, LCFN fundraising is going to take a new direction. I’ve come to realise, painfully, that the only way to prevent more days like Monday is to invest in more research. Funding bucket lists and wishes is nice but it’s only papering over the cracks of more children being diagnosed and ultimately passing away. That has to stop. As I’m writing this 201st chapter of the story, 1700 miles from home in southern Italy, I caught a news feed of Bradley Lowery’s funeral on social media. It set me off again. These days have to stop, and only research is going to do it. We have to stop being reactive and start being proactive. If you haven’t already seen it, please watch this:

As a thank you to LCFN’s followers in Australia, and especially to Amelie (and Ben) for their ongoing love of Eileidh, I’m going to start fundraising for Neuroblastoma Australia. I’m not going to abandon Solving Kids Cancer, but I am planning to offer support to the research that’s taking place down under: ultimately, that will help children worldwide through the breakthroughs that are being made.

Driving home on Monday night, it was like a great weight had been lifted from my shoulders. Seven days earlier, on Jane and I’s return from London, miles were furthest from my mind. That’s where #ForeverFive was born and it’s a spiritual place that I know I can return to if ever the need arises. #ForeverFive is a sanctuary where recovery miles exist: where there’s no pressure to break your body. In truth the last two weeks have been utterly slothful. But fortunately Gail’s got some ideas up her sleeve to support the memory of our wee Princess and I have more than an inkling that I’m gonna roped in. Show me where to sign. I’m happy to be used as a cash cow in the time that’s left.

No sooner was I back from Aberdeen than our whole family headed 250 miles south to catch a big bird into the sky: this week has been the final piece in the jigsaw of my renaissance: ridiculous heat, beer, wine, sightseeing and zero miles. There’s no way I’m coming home free of the thigh injury that’s plagued me for eleven months now, but at least it’s had a wee rest. Next week kickstarts the next phase of the adventure, starting with 32,000 miles: that’s only days away: pencil it in for next weekend.

I’m also planning some new kit. Four years into the journey, I’m gonna promote LCFN through the look: a yellow bike with yellow tyres and yellow handle bar tape. And a new yellow helmet. I’d like it by September for Go Gold month but that may be a bit of a long shot: nothing’s been ordered yet. The new bike’s also going to have hub gears instead of derailleurs because the dirt wrecks them on the shit country roads of Ayrshire. This will probably be the final bike: the sixth of the series. But with a bit of luck it’ll do me for two more years and by then LCFN will be looking down the barrel at 50,000 miles. It’s starting to look like 25K was just the warmup act…

The next few weeks will be fragile: I know that. But I’ve got the four year anniversary coming up on the 19th August and it would be nice to try and get close to 33K miles by then. That’s the springboard for next year: Australia beckons in 2018 and despite my thinking that it would be nice to ride into Adelaide for 40K, I suspect that landmark will fall long before then.

If you’ve read the last couple of blogs, you’ll also know that I’ve been trying to play catch up/keep up with the SNOMED course that I started at the turn of the year. I bought the laptop on holiday because I’ve got an assignment due, and an exam coming up at the end of next week. The pace of that is as relentless as LCFN has been these last three years. But the homework’s done, it’s in and I’ve scored enough marks to keep the wolf from the door. I’m not a doctor and I’m not expecting to ever know enough of this stuff to make a diagnosis: that’s not my job. I’m a data man and my objective is create software that will allow my people to make those same diagnoses. Horses for courses.

But back to the future…

Two weddings and two funerals may have taken their toll. But Eileidh inevitably has had the last word…

Relight my fire: Take That!

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