How ok is it to moan? I was told last week that I’m ‘so positive despite everything’. Great, I hope that’s how it appears, because for 5 years I’ve been trying hard to not look like I’m beaten down. I laugh, joke, keep busy and keep going.
The point is, positivity is not a given. If anything, positivity is bloody hard work faced with the day in, day out crap that goes with being unable to solve the problems that Isaac faces.
Sometimes, like today, it feels bleak. To be told last Friday by his GP that one of his drugs (trihexyphenadyl in solution) is no longer commercially available, when he has about 4 days supply left causes me and Lynsey’s hearts to sink. Why? Because it’ll be up to us to start making calls to outreach nurses, paeds, neurology (so far) to try and get an answer to ‘so what next’? The GP says they can only get it special order ie made up to order rather than in a pre produced commercial format and they’re clearly reluctant to do that. Why? I couldn’t possibly say.
So, Lynsey has spent today chasing ANYONE for an answer. All the time the clock is ticking. If it’s a special order item it will take 24 hours to order in, at least. But there’s no connection between GP giving a ‘no can do’ and the neurologist who originally prescribed it. It’s left to us to solve. For Isaac.
Ok there’s a lot of stuff I think fall into our ‘mum and dad’ jobs us immersing ourselves into medicines planning between acute trust, GP and CCG and expenditure on special order items is’nt really in our skill sets. Let me stick to making paper aeroplanes and Lynsey to decorating the xmas tree with the help of a rather over excited 5 yr old and 10 yr old.
So, it’s that old communication chestnut again at play. I don’t mind that it’s not flawless – I’ve spent 3 years talking to lots of people who have had to sit and listen to me rabbit on about how to get it better in a 6Cs’y way and how, when communication goes well, it’s produced some outstanding results for Isaac. I know it’ll never be perfect when there’s so many people involved in the network around Isaac. But, without using expletives it’s difficult to convey how annoying it is when it totally falls over like it has on this one little medicine issue and we, as mum and dad, are left to sort it out. It shouldn’t happen, surely?
You might think ‘come on Rick, it’s only a prescription’ but it’s a bit like when Michael Douglas gets told he’s missed the breakfast menu by three minutes in Falling Down ; it’s another little straw breaking and you never know which one will cause you to spiral. I mean spiral as in thinking ‘what is the point of trying’. It’s a grind. We’ve had dozens of these types of things, from having to argue to get a sun canopy / rain cover for Isaacs specialist buggy, to arguing for him to get an SLT feeding provision when he had his PEG fitted and there was no follow up service commissioned, to having to argue about Isaac’s EHCP provision. Everything is an argument.
Proving that Isaac needs things, in a way that makes you feel like you’re audacious to ask. Giving Isaac a voice in decisions where people are happy to do ‘to’ and not ‘with’. Never a month goes by without something. 18 months up to this point to get house adaptations underway so Isaac can have a bedroom and move out of our bedroom for the first time in 5 years. Honestly, I could write a book of the problems, challenges and arguments but you’d be bored and I’d just be banging my head on the table.
So…positivity, yeah, I try. To be negative all the time would feed the black dog of depression that lies within me, and that I’m terrified of coming out. I need to keep my chin(s) up. But please, please don’t think I’m some kind of weird anomaly – there’s hundreds, thousands of parents of children with complex needs who are having to do this day in day out just to function. It’s not so much choice, as necessity.
Sometimes I sit here and think ‘b*llocks to it’ but then, well, tomorrow’s another day. It’ll bring with it a load more crap but nothing compared to what we, collectively as a family (and I mean that, me, lynsey and all three boys) have not already conquered previously.
As Dory in Finding Nemo sang ‘just keep swimming, just keep swimming…..’