I have experienced grief before, I have lost family members and I have miscarried babies but this was different. This was grieving for someone who was living it was grieving for my daughter who was lying right next to me falling asleep. I never understood that you could have grief like this, it was new and it stung deeply. I realised that this grief was not going to go away quickly and I would have to learn to live with it.
Over the last 7 years I have grieved Lizzy’s Epilepsy and other diagnosis’s quietly, noisily, aggressively and funnily.
By funnily I mean getting on the phone to my fellow Ragdoll Mumma and chatting about a new diagnosis. Then plotting on how we would escape to a deserted island with unlimited chocolate, wooden spoons and personal massages from Sven the 6 foot tall masseuse. I must remember to pack some toilet paper in my bag in case we eventually do get to do that one.
Aggressively, well it’s okay to break a plastic cup or wreck the odd wooden spoon when you are so frustrated and sad that physical violence to kitchenware seems the better option than taking it out on your family. I have often contemplated starting up an epilepsy carer’s plate breaking service but I have a feeling that I’m going to run out of plates. And I may also embed plate shrapnel into my leg and then I would have an outside reminder of my grief and I don’t want that.
Okay next on the list quietly, when I say quietly I mean sobbing so hard no sound comes out of your mouth and you have snot dribbling down your face. The other quietly option is to ignore the grief and bottle it all in. Bottling it in works well in the short term but it is the one that could see you end up in a shopping centre crying inconsolably while picking out socks for the kids at BIG W.
And then there is the NOISILY grieving in the car with a Pearl Jam song on the stereo “Oh I, oh, I’m still alive, Hey, I, oh, I’m still alive”…. Singing and crying with the windows up and my sunglasses on. Hey maybe I start writing song lyrics.
Epilepsy you’re a turd
All I want to do is kick you to the curb
And shit all over you like a bird
And if all else fails I will end up with GERD
Okay maybe song writing is not my thing I will stick to singing while I grieve.
But seriously this uncontrolled epilepsy journey is full of grief. I’m sure some of you may have heard of the term the “little death” relating to orgasm. Well I think lots of epilepsy carers see what feels like “little deaths” each time they see a seizure. Each time they watch their loved one have difficulty breathing or convulsing or dropping to the ground. They experience the adrenalin and the heart in your throat moment plus the instant urge to go to the toilet and release their bowels (yeah that’s gross but it’s true).
Each time we learn something else about what epilepsy has done to our child’s health or development we grieve and it’s normal, bloody perfectly normal. It’s not fair what we go through and it would be wonderful to go into a two year old tantrum position and lie on the ground and yell “I DON’T WANT TO DO THIS ANYMORE” while stamping our legs and arms.
We all need to remember we are doing a great job and that includes the days we threaten to leave our child outside because we have had enough of the med side effects affecting their behaviour. It’s a hard gig but we are doing it well and we have to remind ourselves of that.
Grief is part of living and to cherish life you have to embrace death. Death of a dream for your child’s perfect health and the realisation that things will not be what you expected or planned but that thing will be okay. Life moves along and we learn our own coping techniques. (Meditation good drinking alcohol bad)