99 Pink Balloons

Every few months, a blog comes along that’s almost impossible to write. This is one of them.

Yesterday I went to a funeral. I went, knowing upfront that I knew no one: I was an outsider. I didn’t know the person who had died, I didn’t know the family, I didn’t know any of the friends of the family, but I had an overpowering sense of needing to be there.

This was a funeral that sent shivers down my spine. That same extreme sadness that I felt seven months ago was rekindled, and some, by just being there.

A stranger, who cried.

This wasn’t about supporting Solving Kids Cancer, nor it was about supporting Neuroblastoma Australia. This was simply about being there for a family and a community who had just lost a precious princess to neuroblastoma.

Layla was diagnosed about a year ago, when I was already trying to prepare myself from the fallout should Eileidh pass away. I’m not very good in the aftermath: I will work my socks off in support of a warrior, and I will work even my boots off in support of an army of anonymous warriors. But when you’ve lost someone so precious as when Gail lost Eileidh, I couldn’t let go: I couldn’t walk away and ride another runaway neuroblastoma train. All I could do last summer was look inwardly and focus on the things that got me to that point.

Eileidh’s passing inspired both August and September. I thought she was done with the inspirational stuff when she dragged me back onto the bike to deliver 1046 miles in August. Without checking back in the records, I think that might have been the second highest number of miles since I started. I was away with my work on the 1st September and bagged zilch before Puddles turned up the turbo boost for the rest of the month: 1353 with only a single day below 40 miles. That was the power of Eileidh.

Cue Layla…

Three years old and gorgeous. I only have boys, three of them, all grown up, and so I guess I’ve escaped having to be softer and more understanding: tough love and TCP has always been my way. But there was a photo I saw on Layla’s Facebook page just a few weeks ago and it made me think, in the blink of an eye, that if I’d ever had a daughter, I’d have wanted her to be as gorgeous as that wee girl. Heaven has truly taken an angel.

Cue January, cue the weather and cue this week…

I knew some weeks ago that Layla was terminally ill. And I also knew what Eileidh’s passing had done to LCFN once I got my head back in gear. I wanted to be ready, and if you like in a position to allow Layla’s battle against neuroblastoma to mirror what had happened six months before. That’s what fuelled the risk taking and the mile bagging of early January. I was on such a good roll before last Friday came along, and Stewarton was cut off from the rest of civilisation by a mad snowfall in the space of a couple of hours. I circumvented that on Saturday by dumping the Gold bike in the back of the motor and heading out to the coast so I could catch black roads and nae ice. It worked a treat: until the engine fault light appeared on the dashboard on the way back, which meant I couldn’t repeat the trick the next day. I woke on Sunday morning to a threatening sky, and as some of my friends already knew, more snow was already on the way. The bike stayed in the shed and I lost a snow day. As it turned out, it was a wise decision, because for three hours, the snow came down. But if you’re me, that’s no consolation: I don’t accept taking a timeout when the going gets tough.

With one car off the road and Jane working in Edinburgh, that left me with a bit of a dilemma: I was going to Layla’s funeral come hell or high water. If Jane needed the car, then I planned to take the Gold bike to the funeral: in many ways it fitted my persona because it’s gold for a good reason. It’s just that people don’t normally go to funerals on two wheels (Gail, tell Louise that this guy doesn’t do normal). I’m not ‘people’ so those rules don’t apply: I much prefer to do what feels right rather than what’s pure etiquette. But in the end up, Jane didn’t need the car, she was on the train. So I just needed to sort my head…

That meant a 6am start yesterday: no big deal because I did almost three years of 5am starts back in the old days: early starts focus the mind: they make you appreciate that you’re different, doing something that no normal person on the planet is equipped to do, either physically or mentally. Being out in the dark on a bike on unlit country roads is an exhilarating experience (so long as there’s no black ice about), take my word for it.

I got back off a 31 miler at 9:05am. Layla’s funeral was in Renfrew, almost twenty miles away, at eleven. And our other car, the working one, was at the train station ten minutes walk away. Still to get cleaned up: still to get fed and watered. And when I got in the car: it was still to be fed too… nae fuel!!!

It was ten past ten when I finally left Stewarton: but you don’t cycle the back roads of Ayrshire and Renfrewshire without knowing some of the wee short cuts, all the wee roads where the traffic doesnae go.

I was parked up by ten to.

But as I said at the beginning, I knew no one. Louise had asked for bright colours, so I wore the brightest bike top I have: and I purposefully didn’t wear it on the road that morning: high viz wi’ logos, you can see it coming a mile off. I was there after all as the LifeCycle Man to pay homage to a wee soul who gave her all to life before neuroblastoma cut it tragically short.

As the horse drawn carriage pulled up in front of the Normandy Hotel, a guy ages wi’ masel’ broke down to my right. I just hugged him, and hugged him for what seemed like an eternity: couldn’t let him go. Don’t know whether he was family, friend or just like me. It doesn’t matter, he was there.

I heard later on social media that the streets leading from the Normandy to the cemetery on the other side of Paisley were lined wi’ folk, all there to pay their respects to their wee lassie. This wasn’t just a family funeral: this was a community coming together for one of their own, just as it had been in the north east seven months previously.

I’m sat here writing this, and the order of service is right there in front of me. I still can’t get how someone so perfect, as it was with Eileidh, can be taken from us by this awful disease. Life is not fair.

I felt many emotions yesterday: I did the numbers on the seats and I reckoned there must have been 400 there: and twice as many on the streets. A thousand people awakened to the deadly reality that is neuroblastoma. I know many people with young kids: family and friends. And those friends will have friends. Since I started out on LCFN, something like five hundred kids have been diagnosed in the UK: another two hundred in Australia. And one prominent child in America: Devon Still, who played NFL for the Bengals, the Texans and the Jets, has a daughter Leah who was diagnosed with neuroblastoma in 2014. Devon put his career on hold: Leah survived and in December of 2017, Devon announced his retirement from the NFL in order to pursue a new career as a childhood cancer awareness advocate in the United States. Sometimes, just sometimes, you come to realise that life is worth more than a career, and once you step over that threshold, there is no going back.

From hugging and crying with a complete stranger, to standing at the graveside as a three year old princess was laid to rest on a cold winter’s day, I will tell you this: I am not letting go. The funds may have stopped flowing into LCFN a long time ago but I kept going while the money drifted away: I have learned since that awareness of this dreadful disease is both king and queen: it takes no prisoners: and I will never give up while precious kids like Eileidh and Layla are laid to rest.

One final thing about yesterday: and it shows just how important Layla’s life was: they stopped the planes at Glasgow Airport just so the family could release balloons into the winter sky:

99 pink balloons.

Author: Von Schiehallion

I'm an old endurance athlete who's pulled a few tricks in his time. I ran my first marathon at 19 round a grass athletics track, ran/hobbled 100 miles in a day at 30, cycled from Manchester to Glasgow in a day at 40, kickstarted the Highland March at 50 and now, at 60, I'm doing LifeCycle. Life's too short to sit still for long. I like doing stuff that just seems impossible...

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