* My mom’s been known to accuse me of talking like a truck driver. (Maybe even a tattoo shop owner?) So warning: this entry includes mild adult language.
About eight weeks ago I found a curious word in an unexpected place. As quickly as it caught my eye, I googled aniatos and learned that it is the Greek word for “incurable, without remedy.” I spent about a day wondering about my friend who had planted this word. Is he ok? Why this word? And then I spent about a day wondering about just that word. THAT WORD. What a terrible word. I HATE that word.
Sometimes it can take me a minute to see the obvious. It took those two days to notice that aniatos is just another fancy way of saying all the other hopeless words I’ve learned the past couple years - intractable, refractory, treatment resistant. Words that all describe my son.
I also especially hate that word because of the way it appeared. The night before finding it, my son had his first seizure in eleven and a half months. Undoubtedly a message from our favorite trickster, epilepsy. So rude.
If epilepsy had a face, it would look like this guy. Epilepsy is the meanest, most personally hurtful disease that knows just how to add insult to injury. Its timing and attention to highlighting the extra painful details in your life are always on point. I have a friend in our support group and we often observe, “Epilepsy is such a dick.”
So thanks dick! Full disclosure: my son is no longer “seizure free.” Since we’ve been so vocal about our successes it only felt fair to be transparent about our set backs too.
One week before his 1 year seizure free celebration, while talking to my son over dinner, his face fell into his soup. I was looking right at him. A drop attack. I hadn’t seen one in so long but I knew what it was. As a parent you don’t ever forget and the repeated daily trauma came back in an instant. I was wide eyed and wild. What. Is. This. Just a break through seizure or is it on? What does this mean?
Oh, right! Thanks for that reminder epilepsy. So. Rude. Because I’d almost forgotten. I’d ALMOST gotten so wrapped up in HOPE that it felt like you were 100 miles behind us.
All year I knew they could come back as quickly as they’d disappeared, the 15 to 25 seizures a day we’d never learned to accept or live with. We may be new to this disease but I pay attention. I know that seizures come and go. And come back. I’ve imagined veteran moms like Marylou Connolly and Elizabeth Aquino giving each other side ways glances across the table from me as I beamed over 4 months, 6 months, 8 months seizure freedom. But I couldn’t help it. It was hard not to hope that maybe, as each seizure free day passed, that we might actually be holding our lead.
And then last week, while his dad was on the otherside of the country (of course!), I got that dreaded call from my son’s school letting me know he’d had another seizure on the playground. So now he’s had 2. I’m not traumatized this time. I’m surprisingly resigned - what did I expect? It feels like epilepsy has officially caught up with us and it feels 10 inches away. At all times. Hovering. Just right there. So. Rude.
Its so hard to know what break through seizures mean. Is this a new pattern? Gulp . . . is the old pattern coming back? Is it from a growth spurt? A meteorological phenomenon? Is something wrong with his AED or this new batch of CBD? Is his endocannabinoid system saturated? Do we change his treatment plan or do nothing? Can my mind stop racing? Is there any remedy for this incurable disease? Does my boy have to be aniatos?
With all the unknowns, there are so many knowns that are very reassuring in moments like this. First of all, he is obviously still experiencing a huge improvement, a level of improvement he never saw until we added cannabis. Secondly, we have so much support now and so many resources. Our favorite friend Anje was with us that day, and we made it through without any more seizures. I reached out to all my ladies in our group and spoke with Ray at The Realm of Caring. I ran a sample of CBD down to Greg at SD Pharm Labs, will be taking my son into Rady’s this week to check his bloodlevels, and I already had plans to meet with our naturopathic doctor, Michelle Sexton. I received concerned phone calls, sound suggestions and plenty of nurturing.
So its not the end of the world, you know, its just our life. Trying to cure the incurable and getting so close.
Elizabeth Aquino says
Wow. What a powerful post. You’ve captured the terror perfectly. Keep breathing, woman.
Nicole aka Brettsmom says
Awesome post! Had to fight back tears ! Oh so familiar! Beautifully written! Great job friend!!!
Maria Pena says
Amazing words. I am so proud of you for taking on this cause and fighting for your son. As a pediatric nurse in an ever changing world I am really a huge fan of what you are doing and an advocate for medical cannabis in pediatric patients. You give me so much hope for my little patients that are struggling.
Thank you for sharing what I’m feeling. I feel so alone in this even though I know I’m not. But as much as I have these feelings of “hope”/yes, then no roller-coaster, I know my daughter actually is the one who has to live with seizures along with these emotions. She’s is 14 years old now. She’s the one who has been on this journey for the past 2 years as a pre-teen; she’s growing into a young lady now. It’s breaks my heart to see her having to figure out how to manage these disappointments. Yet, she makes me so proud of her. She is handling such an adult emotional situation, and keeps the strength to keep looking for positive change. In all honesty, she is my hero and gives me the strength to keep moving forward for her health, her life.
Allison Ray Benavides says
It was so great to talk to you tonight. Loved the theme of “empowerment” - definitely a beautiful side effect of this treatment too.