In the emergency room after Haley’s first distinct convulsive, no doubts left, that was definitely a seizure they gave her medicine through an IV. I was naively relieved. My baby girl who had at that point had 5 witnessed seizures that we weren’t sure were seizures until that moment, was now, again, going to be ok. There’s a medicine for this. I thought that those seizures might sneak in from time to time but I thought that medicine was the silver bullet that would heal her.
But it didn’t. Nor did any of the other pharmaceuticals available here in the US. Not only did they not help but many of them hurt. We turned to alternative medicine. Reiki, supplements, diet therapy, chiropractic, chelation, essential oils… You get the picture. And yet among those there was still no silver bullet.
13 months ago we were invited into a study for a pharmaceutical derivative of CBD oil. Despite my moral objections to this plant being dispensed by a pharmaceutical company and the science that says whole plant full spectrum cannabinoid (say THAT three times fast) medicine is better, more effective medicine I set those objections aside because it was our only chance at access. It was no silver bullet.
We finally gave in and had the surgery to implant a VNS device. It has only been a week but it is not a silver bullet either. I swipe and swipe and she seizes and seizes and eventually we both collapse in an exhausted heap.
When I talk about how much hope I have that cannabis could be her answer I hear a lot of “Be realistic”. “Don’t get your hopes up too high”(pun intended) Etc. I know families that have moved across the country for access and are surrounded by cannabis products that still have not found their right combination. However many are seeing some improvement. I don’t think any of us parents needs a reminder that this is not a silver bullet. We have bit down on despair and choked on sorrow too many times to believe in silver bullets. Even as we never give up hope that some day we’ll find one.
What I do really believe in is opportunity. The chance that even if it’s not a silver bullet it will ease at least some of this burden from her.
What I have learned in the past 5 years since Haley’s diagnosis is that for most there are no silver bullets.
No silver bullets but plenty of lessons. I am learning. I have learned…
That legal medicines are far more harmful than an illegal plant.
That I have a voice even if I’m sometimes too weak to use it.
That Haley is never too young to self advocate.
That insurance companies are evil.
That doctors and their opinions are important but not more so than yours.
That I can break down and it’s ok.
That I can be vulnerable and open and lose people because of that but that the right people will step up.
That the ones you think will be there won’t, but others will surprise the hell out of you.
That there is no straight path and no one else is going to forge it for you.
That no one minds if my child gets high on a little white pill but everyone wants to know if she’ll be high on a plant.
That my child and her struggle are not a burden. I can’t bring myself to call it a blessing but nothing about her is a burden.
That hope can be hard to find on the darkest days but it is always there. I can find it in the light of her smile or sparkle in her eye or the way she wraps her arm around my neck in a headlock telling me she loves me without needing words.
Her love is my silver bullet. And the people who surround us and support us and encourage us are my hope for a better, brighter day.
The sun will come out tomorrow, but it’s here today as well. Don’t forget to notice it.
13 thoughts on “No silver bullets”
omg I could have written this word for word, I have said this ALL word for word. Thankyou for sharing
Thank you for reading and relating.
Thank you for sharing mama. Sending you all the comfort in the world.
Thank you! Sending some back.
You inspire me with every word. Every blog. Not just because you are brave and honest and kind but also because your writing is enviable. “…we collapse in a heap of exhaustion” and “We have bit down on despair and choked on sorrow too many times “. Wow. That is strong, visual language that brings me so much deeper into your world. And that’s a good place to be.
That means so much to me coming from you since your words touch me regularly.
This was beautiful AnD So Relatable. ThanK You For Sharing! (Sorry For The Obnoxious Caps…My Phone Isnt Typing What Ive Asked!)
You took the words right out out of my mouth. Thanks for this beautiful and eloquent essay. It sums up my feelings and experiences as a parent of a child with intractable seizures perfectly.
This is a very inspiring and heart felt piece. May I have your permission to print this and read it aloud at an upcoming medical cannabis advocacy event in my area? I find as an advocate myself (in the same situation as you and having a child with intractable epilepsy) sometimes the message is more powerful when I share how the struggles of others and their sentiments move me. It reinforces the importance of us all being moved by others. Empathy is a powerful tool. With your permission of course I would love to share this message.
Please do. Wishing you the best on your journey.
I feel like I was reading my own thoughts about my own journey! Thanks for sharing it!