‘I love you, you love me, we’re a happy family. With a great big hug and a kiss from me to you, won’t you say you love me too?’ Barney
It’s official: I have my entry for the Lake Vyrnwy Half Marathon on 10th September. I’m feeling slightly hysterical and don’t know whether to laugh or cry. Maybe I should do a bit of both? It’s all very well having twittered about running a half marathon to mark my half century but now it’s for real and there’s no going back. Yikes! Quite honestly, I think it is complete madness: I am a truly terrible runner – let’s face it, I don’t even like running – so why on earth am I doing it? Well, let me tell you about Lewis.
Lewis was the precious son of our oldest (!) friends Gordon and Norma and big brother to Megan. He was a beautiful baby and mischievous toddler and we were devastated when, at the age of four, he was diagnosed with Sanfilippo syndrome. Sanfilippo is a rare genetic disorder which causes gradual mental and physical deterioration and eventually premature death, normally in the teenage years. Over the next few years Lewis lost his mobility, becoming confined to a wheelchair. He began having severe seizures. He lost the ability to eat or drink and was fed via a gastrostomy peg. He also lost the limited speech he had and general awareness of the world around him. He began developing serious chest infections and eventually succumbed to these in February 2015, aged 17.
The immense sadness of this story can’t be put adequately into words, and yet despite everything, Gordon, Norma and Megan ensured that during his lifetime, Lewis really lived life to the full. They exposed him to so many wonderful experiences, travelling abroad where many would have feared to tread, even enjoying family holidays in Spain in latter years when flying was no longer an option.
We have so many happy memories of our times together, whether at family events like Sarah’s 18th birthday, Sam’s 14th birthday ‘princess’ party and Vicky and Tom’s wedding (Lewis dapper with his rosebud buttonhole, Megan sparkling as bridesmaid) or just weekend visits when we all relaxed together and had a good time. These included a couple of ‘tacky Christmases’ where we went completely overboard and laughed ourselves silly. Lewis was always such a big part of those times, chilled out on his beanbag enjoying his favourite ‘Barney’ videos or ‘The Singing Kettle (which left a lasting impression on Sam!) while much fun and merriment went on around him. We all loved him very, very much.
CHAS ( Children’s Hospice Association Scotland) CHAS became a huge part of the family’s life from June 2004. For the next eleven years, Rachel House Children’s Hospice in Kinross provided them with a safe haven, a place of warmth and fun where they could go for 3-4 day breaks which allowed Gordon and Norma to be mum and dad again, and not the carers that they had become in their own home. They were also able to meet with other families who were in the same position and to share their stories and experiences. At the house, there was always someone available to talk to Gordon and Norma, and to support Megan. The staff knew Lewis very well, and supported the whole family through the tough times when he was very ill and in the days and weeks that followed his passing. As the family put it, ‘If it wasn’t for the love, care and support of everyone at Rachel House we, as a family, would never have been able to come to terms with the loss of Lewis.’
When Roger and I visited Rachel House in 2015, we were completely blown away: this was no clinical place full of sadness and despair, but a house that felt like a home, full of colour, warmth, laughter, fun and – overwhelmingly – love. It is a very special place and I am setting out to raise money to support the wonderful work that is done there in memory of a very special boy. This is my way of saying thank you to Lewis for all the joy he brought to our lives and a celebration of a long and very special friendship with his family.
This is a massive personal challenge, believe me: 5K is more than far enough for me, 21k is completely bonkers. However, I am determined to do it and hope to finish on my feet (although crawling may have to be an option!). When I reach a point where I feel I can’t go on – and that will happen, possibly several times! – I shall remember those sparkling eyes and sunny smile.
There’s nothing to say that if Lewis had lived to fifty, he would have ever wanted to run a half marathon; the point is, he never had that chance. I’m going to do it for him. Wish me luck! 🙂