The spoon was being shaken vigorously and the cream dropped off into the bowl. She grabbed the egg and cracked it into another bowl and whisked and then poured and swore under her breath as the whole egg dropped in and sent the scale numbers flying up. She felt like crying but she knew that this was not something she could give up on. She threw the bowls contents into the sink and started again.
Would her child eat the meal? Would she have to bribe her child to eat everything on her plate? Would this work? Please let this work. She peered over at the sink full of spoons, silicone muffin trays, bowls and scrapers and knew that after cooking came the dishes, the massive pile of dishes that never seemed to end. She thought about how things had changed but this had to work, it must work.
She realised people must look at her weirdly when she was in the grocery store as she picked up item, after item, after item and read the nutritional labels. Carb too high, fat too low and occasionally yes the perfect item would be found.
She felt like when her child was a baby, always planning ahead, always thinking about what food she was about to run out of “oh god don’t run out of cream” it happened once and it left her with anxiety every time the cream got low. What if her child decided she didn’t want to eat the same meal again on a Sunday night when food was low and the shops were closed it sent her stress levels high waiting for her child to say “No I won’t eat this”.
Her child screaming how she hated this, how she just wanted to be normal. She would soothe her child and hold her and tell her she had no choice, this was it, this was her last option. Her child would scream at her “I would rather be on medication” but she knew it had to work she had put too much effort in for it not to work, this must work.
She watched her child see things and hide and sleep after and knew that this had to work.
And then it happened, a little bright light started to shine and she realised that this was working, this was going to work. She waited for the shoe to drop and the only thing that was dropping was the cream. The hard work was giving her, her child back, the weight of the responsibility of doing this was paying off and the weight of things was what was making this possible.
Then her child told her one last time when things had been calm for a good length of time that she just wanted to be normal, if only the child realised how normal she had become because of the strength and determination that she shared with her mother to get through this. But that “wanting to be normal” from her child came with a single tear rolling down her cheek and a stillness and steeliness that showed her that her child meant business. Her child was done and she cried with her child and then cried alone.
A gut wrenching cry of the unknown ahead but with an understanding of how far they had come and whatever may happen in the future that she knew that she had tried her best and the rest was up to the Gods.
She cried for what Keto had given them, for the stress that had been taken away by doing it and for finally understanding that perseverance and never underestimating herself or her child is what have given them what they had today.
Never Ever Give Up.
My Daughter Elizabeth has tried multiple meds over six years with either no real improvement of her seizures or short lived honeymoon periods or horrible side effects. I watched the movie “First Do No Harm” cried like a baby and decided that day after talking to my husband and more tears flowing that we had to try the Ketogenic Diet.
We were lucky enough to be able to start Keto four months later. Due to Elizabeth’s seizure type, which were mainly simple partial status visual hallucination seizures happening on average anywhere from 8-12 a month at the time, our neurologist allowed us to come off medication as we started Keto a rare thing that we are eternally thankful for. No medication gave us the chance to see our girl improve very quickly on a behavioural and cognitive front as the meds left her system but we still had a long way to go as the seizures got better and then worse and then finally better.
The Ketogenic diet was one of the hardest things I ever did and for my daughter I know it was the hardest thing that she will ever do.
A year after starting Keto we started to see her visual hallucination seizures go and be replaced with other simple partials but for us the visuals were minimal if they occurred they were quick. Instead of 45minute-1hr they were going for 15 minutes and then they became shorter and less intense and then they stopped.
We continued to have small simple partials and at the start of this year they started to calm as well.
We finished diet three months ago and we are currently medication and Ketogenic diet free. Lizzy is still having occasional simple partials which are quick and manageable and we just recently got through our first illness off Keto with no seizures which was huge. Lizzy’s EEG is not perfect but so so so much better and we hope that continues to improve.
We don’t know if things will stay like this or if they will go backwards.
To give you an understanding of this Elizabeth said a couple of weeks ago “Mum I think they will come back later this year” which was terrible to hear but also shows how she is both remaining hopeful but is also very realistic that it may not be our cure but something which gave us breathing space.
The psychological effect of her seizures has taken time to be able to work through and the break from big seizures has allowed her to explore, develop and grow as a young lady and for Keto we will be forever grateful to see the girl we have today.
I say it a lot “Never give up” and I mean it. Never ever give up, when everything seems pointless and a dead end we must keep fighting.
I also appreciate that our lot in life is so much easier than other families and my fight is easy compared to many but please know I am behind you all 200% – keep fighting. 💜💜💜
Ragdoll Mumma Zoe
For information about the Ketogenic Diet please find below some links to the two sites that helped me.
Here is a link to a great book that helped me understand the ins and out of the Ketogenic diet. (not for recipes purely the medical and commitment side)