Up on the balcony I look at how far we have come. I feel lucky that I have the time to sit on the balcony and look at Lizzy’s health but it’s not the first time on the balcony and it won’t be the last. See for many years I was always on the dance floor always in the thick of it seizures, meds, doctors, research.
The music I would play on the dance floor well it’s fast and furious and makes you dizzy and it pulls you off centre and thrashes you around and exhausts you but you can’t seem to step off the floor incase you miss something or maybe incase your little bit of sanity will crack if you step away. I never gave myself time to be on the balcony I just kept on moving like in a big arsed scary haunted house amusement with things coming out from all angles and mirrors distorting my view of our life.
When Lizzy was having 45 minute simple partial status seizures nearly every night I just went through the motions our whole family did. Lizzy has seizure, I support Lizzy, Scott supports me and Kenzie tries to support all of us and ultimately feels left out but that was life. What I failed to recognise at the time is that I needed to step away from our situation and take time to look at what was going on.
When I stepped away I could start to see patterns and triggers that I wasn’t aware of, I could see how triggers were setting her off and then look at ways that we could work around them, I could see when we had done too much and the fall out that would ensue, I could see how food was playing a role, I could see how school was affecting her and also how the seizures were affecting her schooling. I did all of this on the balcony. I did a hell of a lot on the balcony when I realised I had to be on the balcony each day even if it was only for a five minute look around.
By now I hope you know I don’t have a two storey house with a large balcony overlooking a rainforest where I sip on wine in a sarong with my lithe tanned body on display ( damn that last part would be nice) Nope I have a three bedroom house which is little and cosy and I eat chocolate and I can’t wait to get my bra off at the end of the day and get into cosy clothes and lithe hmm yeah well the wrinkle lines might be lithe that’s about it.
The balcony and the dance floor are metaphors that I learnt about in an adaptive leadership conference and although they do relate to my work they resonated with me more in how as carers we are also managers, bloody fantastic managers too. But just like in work sometimes we micromanage things and we can’t see our arse from the trees. We don’t delegate or ask questions to people around us including our own partners and family, we don’t realise that we may be doing more harm than good, we don’t realise that by wanting things our way all the time sometimes even discounting our kids opinions (this one is easy to do because we need control when our lives are so out of control, but we forget that our decisions affect our minions I mean children too) we don’t see that by micromanaging things that we don’t allow the professionals around us to do their jobs well. We become frustrated, angry, stressed (even more so than the usual), teary and disillusioned.
So STOP right now and look at your child’s health. I want you to look at every facet of it. You know you may do this and find that you are doing everything you can do and things still aren’t going to change and that’s okay at least you have given yourself the time to validate what you are doing and you give yourself time to let it sink in. It could be just saying “I am doing the best I can with what our situation is” But you may find that when you STOP and breathe and look around that there is something you have missed and it could be totally unrelated to your child’s health it may in fact be realising you need to spend more quality time with your oldest child who misses our or it may mean realising that your health is a mess because you haven’t looked after yourself for so long because your a carer.
For our family me stepping away from the dance floor was what led us to trying Keto and reducing Meds and its given me more room on the balcony and for that I am thankful. I had to work hard on the dance floor with Keto. This is where you can make a mental picture of me on the dance floor covered in cream and butter shaking egg off a spoon while the DJ plays the scales.
We all need to give ourself time away from the hump and grind of the dance floor and get up on the balcony and take a good long hard look around and then as always slide down the bannister with pizzazz and flare and smash into the dancers around us and keep on dancing.