On Saturday I joined a dozen other people with whom I share a common bond. For our sins, we support Slough Town Football Club, a team in the eighth tier of the English football pyramid plying their trade in Evostik Southern League Division One Central. For more than a decade, we have looked forward to the fixture list being released to see who we will face on our last away match of the season. Why does this fixture hold significance? Well, somebody had the bright idea some years back that the Rebels should walk to that last game and it has been a tradition that has followed ever since.
Sometimes the fixture list has been kind. A walk to Beaconsfield from Slough a couple of years ago presented nothing more than an afternoon stroll. At the extreme end, two hardy souls made an epic journey in excess of 100 miles walking to Sutton Coldfield. I've been involved in several walks along the way, making trips to East Molesey (Metropolitan Police), Harrow and Hampton, along with a quite silly 60 mile trek to Worthing on the south coast. When North Greenford Utd appeared as the last away game, a sigh of relief must have gone up from those Rebels who are mad enough to have considered the possibility of a long trek to places like Daventry or Rugby. As it turned out, postponements during the season has meant that an away game to Thatcham needed to be rearranged for 23 April. Two of the more hardcore walkers from our group decided to undertake walks to both North Greenford and Thatcham. That's dedication for you!
The end of season walks have always been more than just taking a long winded route to a football match. We've used them to raise money for a number of charities over the years and this year was no different. Back in the middle of February I was sat in the Special Baby Care Unit at Kings College Hospital. My son Jacob was 6 days old and making good progress in recovering from the surgery he had undergone within hours of his birth. At that time I received a message from the General Secretary of Slough Town to say that they wanted to designate Shine as one of the charities that the walk would be raising money for this year. To say I was touched is an understatement.
Jacob was diagnosed with Spina Bifida during the pregnancy and was born with myelomeningocele, which is layman terms means his spinal cord came outside his back due to an incomplete spinal canal. Two and a half months later and the only evidence of this is a small scar on his lower back, with ongoing hospital appointments to monitor his health. To the naked eye he is perfectly normal, happy, bouncing baby boy, but we know that as the months and years go by, we will gain a better understanding of his ongoing needs. Fortunately we know that the Shine charity will be there to support us along the way, providing invaluable advice and information about living with Spina Bifida.
Following the initial shock of the diagnosis at the 20 week scan, my wife and I had lots of questions. They say that ignorance is bliss and it is fair to say that prior to that ultrasound we had no previous knowledge of Spina Bifida. We asked questions to the doctors but most were padded off with a 'wait and see' response which became increasingly frustrating. While we understood they wanted to deal with facts and not offer information that may later turn out to be incorrect, as expectant parents, we needed to look beyond the black and white to build a greater understanding of our son's condition and the effects it would have both on his life and ours.
While the doctors at times wanted to make us as parents aware of the worst case scenario, and remind us we had 'options', we found a lot more answers by talking to Shine. They are a charity who provide support and information to families like mine who were coming to terms with a Spina Bifida diagnosis. From talking to them and tapping into their knowledge, we came to learn more about SB, the implications it may have for our baby and how it would effect his life. We also were greatly encouraged by reading stories of other children born with the same condition and of adults who have grown up enjoying normal fulfilling lives. We were under no illusion that raising a child with Spina Bifida would present challenges, but based upon what we knew, there was only one plausible option for us which was to continue with the pregnancy.
And we are so glad that we did. Jacob is amazing and brings the same levels of joy as our elder son. We have perhaps been fortunate that his spinal lesion was at the lower end of his back and to date he has not required a shunt installed on his brain to alleviate hydrocephalus, but we are acutely aware that it is early days yet and the full extent of his bladder and bowel function are unknown as is his future mobility, though the early indication from his physiotherapist is that he will be able to walk. Come what may, he will be our little superstar and when you read
utterly inspiring stories of other people with Spina Bifida, you can't help but feel confident about the future, not least as we know Shine will be there to support Jacob along the way.
Back to the walk, and it was a glorious day for a stroll. Sunshine overhead and taking a path alongside the Grand Union Canal, a 15 mile walk from Slough to North Greenford was pretty straightforward. A few blisters were acquired along the way, but with all things relative, a little bit of discomfort for a couple of days pales into insignificance. I've personally raised in excess of £300 for Shine, thanks to the generosity of family, friends and colleagues. Combined with money raised by my fellow walkers, there should be a tidy sum making its way to Shine in due course.
