A tricky week in our household has just been survived – little man hasn’t been well (cue increase in seizures/seizure activity = generally unhappy little chap), as a result life has become rather more complicated.
It’s not easy to keep on top of mundane things like housework when you’re constantly cleaning up after said poorly child, comforting after seizures, and waiting for the next one to hit. When Sam’s poorly it’s a bit like seeing a volcano just prior to eruption – the pressure builds and builds until it can’t take anymore.
In Sam's case, activity from the abnormal brain activity builds up causing him to be very twitchy, unsettled and increasingly agitated until the pressure gets to a threshold level and tips him into a seizure. Inevitably, the resulting seizure will be a big one, almost always resulting in Sam stopping breathing and needing oxygen…but on this occasion the feared event didn’t happen.
In many ways that’s even WORSE. You’re waiting for the wave to break, but it just doesn’t… so you never quite manage to relax knowing the worst is over. This time, despite a lot of vomiting (sorry) and generalised crankiness, Sam didn’t tip into the Big Bad Seizure. Lots of little ones yes, but nothing needing more intervention than cuddles with Mummy/Daddy after the event.
Less than a year ago we’d have been in hospital by now, our boy fighting yet another battle. But not today. My boy is so much stronger than he was, thanks to his wonderful feeding tube dehydration is no longer such a massive worry. His strength and will to beat epilepsy down totally blows me away.
This boy is my hero.
It hasn’t all been good however – three grant applications have come back saying sorry, we can’t help. Each one explaining that it’s not that Sam isn’t eligible, he absolutely is, just that they simply don’t have enough funds to go around. So, we sighed, accepted that we either have to approach another charity for help or that we do without until we have saved enough money to self-fund. It’s a tough call, so many families like ours don’t have the option to self-fund as they barely have enough to keep themselves afloat… they need the help more than we do.
Fundraising is a never ending battle to rally support and raise money for equipment that will help our kids. We are currently on the waiting list for an assessment for adaptations, the list stands at 18 months long. By that time, Sam will be almost 6 years old. It’s a scary prospect, having to wait that long, knowing that we aren’t getting younger and our boy is growing faster than his abilities are developing. Yet if you have money saved up to go towards adaptations, you can’t get charity support for equipment and so on.
So you end up using those funds to cover essentials, then when it’s time for the major adaptations there isn’t anything spare to add to the disability facilities grant. We are pretty sure that an extension will be our only option, to accommodate a downstairs bedroom and bathroom, plus hoisting etc., and we also know that will probably come in an awful lot more money than the current DFG amount. It's catch 22.
However, today is a beautiful sunny day.
This morning was glorious, the mists of late summer/early autumn arriving early in our part of the world, the golden rays of the sun gently burning off the mist. Our chickens were out foraging, Max our cockerel throwing his head back and making sure that everybody knew that this was his territory, and that these were his hens.
Sam was sleeping, peacefully for once, the worst of the morning’s seizures over for now – seeing his face so gentle and relaxed just made me smile. Despite our challenges, I wouldn’t change this life for anything. Because to change it would mean Sam wouldn’t be who he is.
So, bring on the next battle – I’m ready for you.
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