Seizing Hope is my journey as a divorced Mom, learning to navigate the bumpy waters of parenting in general, and sometimes losing my paddles in the world of special needs parenting.
I lay it all out there. Raw, unfiltered emotions from the life that we are gifted. And while I would sacrifice myself, give anything to see my children happy and healthy, I love them imperfectly for the perfect way that they just are.
I am an advocate. A passionate believer in the power of hope. Especially the hope found in a stigmatized plant. Also…A lover of dance and words and love. But above all else, a Mom.
I hope here in this space that you will grab a coffee, read the words and feel just a little less alone in the world.
seizinghopedotcom 
Great post. I know a family who is using medical marijuana for their son’s previously uncontrollable seizures and going through much of what you describe. It has been a complete miracle–his seizures have completely stopped. I can put you in contact with them if you want (maybe you already know them as they are also activists in this area).
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I cannot thank you enough for this. I read through a number of posts and have been in full body tears. Some sentences and observations were equally gut punches of recognition and the relief at hearing someone else state what I am now just learning to live with.
I am the epileptic due getting hit by a car a few years ago. I am the [previously] extremely independent, world traveling, writer, and crafter of adventures who now, at any given moment, can expect to wake up in the ICU with its awful stench and constant din but wonderful nurses. I had to and sometimes still have to rebuild my ability to find words and walk steadily. I am the one who loses days to recovery sleep after GMs or rolling breakthrough seizures. Trying to explain it to people sounds like something out of bad pulp fiction, but that’s my life now. Maybe not forever, but the person / capabilities that once were my identity were stolen in seconds on an otherwise standard Tuesday night as I crossed the street.
I try not to focus on before, but on now and the present. I’ve honed my gallows humor and use it, equally, as armour and a softening agent for the ever expanding file of “You Just Cannot Make This Stuff Up”. It surprises people, but it’s the only way I know how to pull myself out of the “REALLY?!” of the situation and build greater compassion and maintain a sense of wonder that I keep waking up not dead.
It’s only now that I’ve begun to really talk about my epilepsy and hearing others, caregivers especially, discuss the reality of it is very refreshing. As the one with the condition, it is hard not feel as though you are a burden, but it’s a burden to hide your frustrations and struggles in the effort to be strong and positive. It’s harder when you just can’t be strong and have to take yet another pass on a great day because your body and brain just need the hard reset of a 12 hour practice run of a “nap”.
Talking / writing and reading helps because I felt so very lost and alone and unprepared for this and I’m a Tigger in real life, so blunt force optimism has been weapon of choice – it’s nice to hear and see that I’m truly not alone in that journey.
Thank you, again, and warmest of regards,
Jacki
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Thank you! I have my cup of coffee, but I am too choked-up to drink it. — Two months ago we adopted an 8 year-old with epilepsy. Her epilepsy has turned out to be drug-resistant. As I write this, she is in the hospital (with my wonderful husband), being administered IV rescue medication. We have started a Modified Atkins Diet (still waiting for an appointment with a keto team), and I am researching MMJ, even though it is not clear whether it will be possible for us in the U.K. Someone shared one of your posts on FB, and I am so grateful to have found you.
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I saw you and your daughter on SBSK. I was moved by your stories and by her spirit. Thanks for sharing more about your experience through this blog. Your writing is important. ❤
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