Get Pixie Pedalling and the Race Around Ireland

I’d never heard of the Race Around Ireland until just after New Year this year when my husband got a very unexpected phone call from one of his cycling buddies, saying that their cycling club was putting in a team to do the race. For a couple of seconds my husband thought he was going to be asked to take part, and while he is a keen cyclist and a member of two cycling clubs, he’d be the first to admit that the Race Around Ireland is not for him. Then the reason for the call all became clear …

We are the very proud parents of a seven year old girl who has physical and intellectual disabilities. Her name is Fionnuala and we have nicknamed her Pixie from she was about a week old. Fionnuala has Dandy Walker Syndrome which was diagnosed prenatally. The impact of Dandy Walker on an individual varies hugely from person to person but in Fionnuala’s case it means that she is – as yet – unable to stand or walk without support, she has about 50 words that she uses correctly and is very vocal besides that. She has global developmental delay, which means she is delayed in every area of development. She attends a special school 26 miles away from home and gets a bus to and from school every day. She loves school and has settled in really well. Fionnuala adores music and loves to sing and be sung to. She loves books and has a number of books she can ask for – or demand! – by name.

Having a child with a significant level of disability changes your life in ways you could never have foreseen. Fionnuala is a happy bouncy very affectionate little girl and is very adaptable to change. However, her level of disability has meant that there are some things it is harder for us as parents to do with our daughter. One of these is of course cycling. My husband would love to be able to share this hobby with our little girl but she is way too big now to fit into a kiddie seat on the back of his bike.

Just before Christmas we heard of a thing that we didn’t think even possible: a wheelchair and bike combo called the Duet Plus. Now this really is the bees’ knees! My husband jokingly posted it on his Facebook page saying he’d love one and we thought no more of it. Until that phone call in the New Year. It turned out that the Virginia Triathlon & Cycling Club had decided to enter a four man team into the Race Around Ireland and had decided to raise funds to purchase one of these bikes for Fionnuala. Now anyone who knows me knows well that it takes a lot to silence me, but that did. I am still, all these months later, amazed and so moved by people’s kindness and generosity in giving of their time, energy and money to support our little girl.

Over the last few months the team – Matt, Lorne, Jimmy and Johnny – have been training hard. This is an elite challenge not for the faint hearted. They leave Trim, Co. Meath at 3pm on Sunday 31st Aug and there will be one of the team cycling at all times – yes day and night – in all weathers (although the forecast is good!) until they arrive back in Navan which will hopefully be sometime late on Wednesday 3rd Sept. Yes you read that correctly, they aim to have completed the route of 2170kms between Sunday afternoon and Wednesday night. On bikes, using just pedal power to get them along. My husband is going along as part of the support crew and is looking forward to the experience.

Virginia TCC have really gotten into this fundraising and have held all kinds of events over the last few months, from spinathons to car boot sales to barbecues to quiz nights and I really don’t have the words to express my heartfelt thanks to everyone who has helped out. I’m not going to single any one person out here but I would like to thank our sponsors Albany Home Decor and Fleetwood Paints for their very generous support.

And now the race is nearly upon us, the lads are all prepped, the support vehicles are being readied, the support crews travelling with them are getting excited, the rest of us staying at home will be glued to the Twitter account and the the Facebook page for the appeal and wishing the lads and all the crew a safe trip. By the way, these four lads all have full-time jobs and lives of their own which means they have been giving up their spare time to do this for Fionnuala – its things like that that restore my faith in human nature. Maybe you’d like our Facebook page and follow us on Twitter too?

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About museandchat

Busy woman, 45, feminist, married, one daughter, wannabe PhD, discovering new sides to myself all the time! Proud mum of a daughter with Dandy Walker Syndrome, community activist, passionate about history, love to read, write, cook, garden and craft.

Posted on August 29, 2014, in Parenting, Special Needs and tagged , , , , , , . Bookmark the permalink. 1 Comment.

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