2018
Our son’s epilepsy started when he was about 13, initially as absences and then full blown seizures. There often isn’t a reason as to why epilepsy should start, and it is quite common for children to develop it for a few years at puberty. My observation though, is that any major shock, whether it be physical (bang on the head/car accident etc.) or psychological (some sort of trauma) could trigger epilepsy. Sadly in our son’s case he definitely fell into the latter bracket, having watched his only sibling lose her life to leukaemia when she was 8 and he was 10. His boat was rocked in a way none of us could imagine. Life is cruel.
To cut a long story short, for the next seven years our son’s epilepsy proved to be of the very poorly controlled variety, and invaded every aspect of his life… and most of ours! At its peak we went to A&E on 64 occasions within a two year period. However, when he was twenty he finally had an VNS – vagus nerve stimulator implant fitted and since the then he has gradually crawled, climbed, staggered back to a more normal life.
We could give you a list of the disability employment organisations who failed him in his futile attempts to get work. His CV was quite lengthy due to mountains of voluntary work and work experience, but all to no avail, and living in a semi-rural area relying on the ever decreasing local bus service, didn’t help.
However, last year he secured a part-time job with a local well respected supermarket. I won’t mention the name, but suffice to say he could now fetch you quails eggs in vinegar, or aubergine and feta pate with pink peppercorns at the drop of a hat! Understandably the managers have had to get over their apprehension about his condition, but now they’ve realised he’s not dropping over the bakery counter or blocking up the special offers aisle every day, most are chilling out.
His employers have had to assess his capability, and yes, there are tasks he can’t or might not be capable of….yet. At least everyone has now noticed how his confidence has grown, how this tall striking young man (sorry a Mummy speaks!) is desperate to work, to contribute, to make suggestions, to learn, to have fun, to have a voice, indeed, to have …..a normal life.
Our tenants in our buy to let have finally moved out. I think when two became 2.5 it became bit of a squeeze! Our son’s 27 now and desperate to escape the clutches of his well meaning, but probably over protective parents! To live in this little house nearby, seems like spoiling him terribly, when my husband and I consider the grim mice infested places we inhabited before we managed to scrape together enough money for a roof over our heads. However, it is a different world now, and our son would never be able to afford his own home, even if he worked full time. So we are taking the bull by horns. Initially we’ll probably be around most of the time, until cooking, budgeting and domestic skills are moderately in hand. Long term, the intention would be to get someone to share with him, not as a carer, but just to be around. However, this move doesn’t come without risk. Indeed Epilepsy Action has recently reminded us that you are three times more likely to die young if you have epilepsy … not very reassuring, so currently we’re looking into alarms, gizmos and gadgets that might help us sleep better.
We’re just aiming for one word. It has 12 letters and in Scrabble, it would score 18 or 54 if on the triple. The definition is “The ability to live your life without help or influence by other people”…….Independence here I come!
