Friday, June 21, 2013

Finlay the Athlete

Over the past five years our family has been helped by a huge range of individuals and groups. In time we hope to be able to give back to as many of these as possible. Recently an opportunity arose to help one of these charities. Here’s the story of how it went:

I like to run. I’m never going to break records but it keeps me fit, gets me out of the house and, since Finlay has been around has been a great source of stress-reliefrecords but it keeps me fit, gets me out of the house and, since Finlay has been around has been a great : my me time. So every year I run in the local marathon. And each year, while I’ve been pounding the local streets, my elder two sons have run in the 3K kids’ fun run. And every year Finlay has waited at the finish line to watch his brothers finish and get their medals.

But this year he turned 5 years old and it was finally his turn. He would get to line up on the start line alongside his brothers and hundreds of other local children.

Each year the marathon adopts a charity which runners can raise money for. By chance this year it was Ronald McDonald House. During Finlay’s short life he has spent many weeks in hospital far from home. While these have been difficult times for us they would have been so, so much harder without Ronald McDonald House. Having somewhere to stay right next to the hospital rather than in a cheap, ill-equipped motel a bus ride away has been invaluable. To have a place that is built and run solely for the purpose of helping families of hospitalised children just lifts a huge amount of stress from our shoulders at a time when we need it the most. We owe them a debt we can never repay, but this year’s marathon gave us the chance to give a little back.

I didn’t feel I could ask for sponsorship for running a marathon as I’ve run them before and, although each one is a huge challenge, I think to ask people to dip into their pockets I should be pushing beyond my limits to justify the sponsorship. However, although my efforts weren’t worthy of asking people to give, Finlay’s were. After all he has gone through in his short life and everything he endures on a daily basis just getting to the starting line was a victory of immense proportions.

So we set up a sponsorship page for Finlay and soon had donations stacking up from friends and family. Social media is great for this kind of endeavour as word spreads quickly around the world from friend to friend. But then things got bigger than we imagined.

Ronald McDonald House, with our permission, passed his story to a journalist from the local newspaper. Each year they have extensive coverage of the marathon the day after the race with results and reports. And they usually have a feel-good story to accompany it as there is usually a plethora of people raising money for countless great charities, running in memory of relatives or in support of friends. This year, out of all the fantastic personal stories they chose Finlay to be their main piece in the print version with a nice accompanying online version.

And there was an amazing response with complete strangers donating money and even a lady from a city in another part of the country tracking us down and phoning us to tell my wife how wonderful she was! Weeks later I am still getting people at work telling me they saw the story.

The race itself was great. We didn’t know quite how his sugar levels would react so we turned down the rate on his insulin pump before the race and gave him a much smaller bolus than usual with his feed beforehand. It turned out we over-compensated as he ran quite high throughout the race and afterwards. But rather high than low and we got him back in range later in the afternoon.

Finlay sprints toward the finishing line

He ran really well with Mum by his side, although he slowed a little half-way round as his heart struggled to get the oxygen round his body. Day to day it’s easy to forget that his heart still hasn’t been fixed properly and I dread to think what his oxygen saturation goes down to when he exerts himself – the cardiologists assure us he will stop long before his heart does and so far that’s been the case!

Thanks to the lady from the charity that offered to hold Vicky’s bag while she was running not realising that its contents were half pharmacy, half sweet shop as it contained any emergency provisions Finlay might have needed. I’m glad to report the bag was never opened!

Also thanks to the marathon runner that passed by who thought the backpack with his insulin pump was a miniature Camelbak! That’s the second time that’s happened although he was just finishing a 42K race so can probably rightly claim fatigue.

All in all it was a great day, he raised over $1200 and, thanks to the local paper, we have a great souvenir to go along with his first finisher’s medal.

The boys proudly display their medals

Tuesday, March 19, 2013

Progress


I can hardly believe it’s been over six months since I last posted here. I’m glad to report that the dearth of posting is mainly due to there being no major dramas recently. Finlay has just been getting on with life and doing what 4 year olds are supposed to do.

So this is just an overdue update for any of you that check in from time to time to see how Finlay is doing.

We’ve been struggling for a while with weight or, more precisely, lack of it. The different aspects of his disease seemed to be conspiring against us to stop him gaining the pounds: we find a solution to get round one issue just to find any positive effects are nullified by one of his other issues.

So last year we made a couple of changes to his feeding and drug regimens and at last he is steadily gaining weight. Nothing earth-shattering but real, sustained growth. He has caught up with the bottom of the growth charts again, weighing in around the 3rd percentile. Sitting here at 6’2” and just a few burgers short of 200 pounds it still amazes me that my son can be so small. But he’s never going to be a heavyweight and progress is progress. It’s really pleasing that our persistence is paying off.

So as I said in the first paragraph he is just doing what 4 year olds do. And that’s wonderful to be able to write! For the last six months or so, through the long, hot southern hemisphere summer, it has been possible to put everything about Finlay’s condition to the background. Never out of the picture completely (still multiple BG checks, quick calculations, boluses, medications: the never–ending grind of the chronic illness) but not the all-encompassing disease crisis management of the early years. We are now learning to view him as a growing, developing young boy. To look to his future with hope and excitement rather than trepidation.

And this year will see him take great strides towards that future. Our little boy is about to start school!!