Lizzy was diagnosed and we were in and out of hospital nearly every week with status seizures. We found a med that worked to control the status seizures about ten months into her diagnosis and we became I suppose you would call it comfortable and more relaxed (lol who was I kidding).
And then one night I heard mumbling on Lizzy’s monitor, I walked in thinking crap they are back and walked into Kenzie having a seizure. I can’t really explain what that moment was like but I do remember saying fuck repeatedly between “it’s okay honey your okay” and I also remember ringing my husband Scott and telling him Kenzie was on the way to hospital and he also said fuck repeatedly. We felt numb and confused and well just a little bit stressed and sleepless damn there had been alot of sleepless nights in the last year.
But hey I know what to do don’t I, I know the system, I know she will go onto meds and we will get on top of this. We got two sensor baby monitors in the same room one had to be analogue and the other digital (laughed that day he he can’t have competing signal for your child’s monitor). We will get her an EEG, we will get her on to Meds and everything will be okay. And we got lucky with Kenzie that is what happened we found a med that worked she ended up being one of the 70% unlike Lizzy. Yeah we had the occasional seizure from Kenzie but things were good (mwhahaha who was I kidding).
I remember just after Kenzie had her seizure my dad telling me about a conference he had been to that day. He had talked to a counsellor and mentioned what I was going through and he told dad I was grieving. Dad replayed the conversation to me and my reply at the time was something like “I’m okay”. That was my standard line all the time, “I’m okay” “I’m okay”. In and out of hospital “I’m okay”, uncontrolled seizures with Lizzy “I’m okay”, two kids with epilepsy “I’m okay”. I didn’t even cry I just went through the motions and remained tough. Can’t work any more “I’m okay” it’s impacting on our life to much “I’m okay”. My mum and dad and husband were waiting, they knew it and could see it was coming and I didn’t.
The first time it happened I was driving the girls to school and driving back home. My heart started racing I had a feeling of overwhelming dread, I started shaking and I couldn’t breathe properly it lasted a short time but I walked inside the house and fell asleep soon after. The next time it happened I was driving to tafe I remember ringing Scott telling him something is wrong I can’t drive sitting there shaking like a leaf with tears running down my face. The third time I was standing in line at the supermarket this one was a doozy I dropped the groceries walked out and rang an ambulance something was wrong was it my heart Jesus Christ what the hell is going on. I went to the hospital and had every thing checked out, all was good they said it might have been a panic attack. It made sense but why, things were “okay” weren’t they.
About this time is when the inner tremor started I woke up in the morning with it and fell asleep with it it lived with me everyday. (This was a time when I still had a bag packed my charger and chocolate ready on the kitchen bench every night) and I was still watching the girls fall asleep every night. The tremor continued and I kept on going, I’m a mum I can do this “I’m okay”. I wasn’t sleeping much at all and I knew this was making it worse but I was going to try herbal remedies and anything else I could throw at this that was natural. But it didn’t stop and the panic attacks didn’t stop either. Golden Grove shopping centre was my nemesis every bloody time I went there I would have a panic attack. We have a good relationship now. My husband was telling me you need to go and see a doctor, my mum and dad had suggested meditation and I had started this but it wasn’t helping enough and then I started to think I was dying and things were wrong with me. I would fall asleep thinking I’m not going to wake up I’m going to die during the night (note: not helpful to induce sleep). I reached a point where I didn’t want to leave the house because of the fear of a panic attack. And I think I knew in my head I was dealing with something bigger but I didn’t know how to fix it.
My husband sat me down and said I think you need something stronger than a herbal remedy and that is when I finally caved and went to the doctors and that day I was introduced to Valium. Wow the tremor had gone it had stopped. The Valium was making me numb in a good way but I’m a fighter who doesn’t need help so I didn’t take large amounts of it. I didn’t want to become addicted but damn it was nice to relax for the first time in a long time. My doc explained “Zoe all you have been through its no surprise you are in this state. ” “You have been living on the edge for to long”. Valium and me were friends for a couple of months and gave me the headspace to start dealing with what was going on. I needed to see someone, a counsellor I got lucky and found someone who dealt with trauma yeah that’s what we deal with trauma and she was a godsend. I had run on adrenaline and negative thought processes for so long my body gave out there is only so much stress your body can take and my tipping point had been reached and run over repeatedly. I talked and I talked and I also found another more suitable long term drug to treat my anxiety and what I now recognise as mild depression. It was a shitty time in my life and our life as a family.
Looking back I recognise how it happened. Seeing your child look like a Ragdoll in a complex partial status, repeatedly holding her down with ambulance drivers to administer midaz because she still had strength in the seizures, watching your child be poked and prodded and screaming and out of control has a deep and profound affect on you its trauma fucking terrible trauma that you wouldn’t wish on your worst enemy. But it’s not just that it’s the constant constant seizures, waiting for seizures, trying to find triggers, always always being on the edge, going to work and waiting for the phone call, making decisions for your child’s health and of course again waiting for the moment that the fucking epilepsy monster strikes again. It can be all consuming relentless and not very fucking fair to your child, yourself and your family.
I still take medication and I have no plans to come off, the reason for me is I am able to function effectively on medication and the tremor I lived with for far too long is not visiting me any time soon I don’t want to go back there.
I have perspective now. I know my triggers. I know when I have pushed myself to hard. I know when to be selfish and look out for me. I know when to ask for help and when I need to talk it out or cry it out so it doesn’t get stuck and fester inside. I can feel it when the anxiety is getting bad and I know how to work through it.
Because of the counselling I received my thought processes have changed including “feel the fear and do it anyway”. Because really that’s all we can do, cherish the good times, swear and cry in the bad and just keep on moving forward.
It’s not a life I would have chosen for my daughters but the lessons I have learnt have shaped me into who I am today. Be kind to yourself and seek help if you need to its not a sign of weakness it’s a sign of being strong for to long and grieving everything epilepsy that it brings to your life.
Lots of Love
Ragdoll Mumma Zoe