First of all, the reason that I'm weeping is because of this story. The part that got me weeping was this:
"I literally see Charlotte's brain making connections that haven't been made in years," Matt said. "My thought now is, why were we the ones that had to go out and find this cure? This natural cure? How come a doctor didn't know about this? How come they didn't make me aware of this?"and this:
"I didn't hear her laugh for six months," Paige said. "I didn't hear her voice at all, just her crying. I can't imagine that I would be watching her making these gains that she's making, doing the things that she's doing (without the medical marijuana). I don't take it for granted. Every day is a blessing."
I've been in this game for nearly twenty years now, and I've been down the road of "cures" for nearly that long as well. My hopes went up and my hopes were dashed and then they went up and then they were dashed. Sophie was tested for this and tested for that, tried this and tried that. I learned to keep the hope, but I learned to shrug off the dashed hopes, sometimes bitterly but never in any sort of defensive way. If you don't have hope, you don't have anything, my old friend Tal once said, even after her own dear son had passed away. I've held the hope in the family and The Husband has, too.
These medical marijuana miracle stories are giving me hope, but they're also driving me nuts. When I log into the Pediatric Cannabis Therapy group page on Facebook, I'm overwhelmed by people's advocacy efforts for their children with seizure disorders. I see myself, but I see myself more than ten years ago. I am so tired. I'm tired of doing it. I might even be a bit tired of holding hope. I know I should rally the forces and get down to it, but I'm having a hard time doing it. I got the stuff for Sophie and gave it to her for nearly a week. There was absolutely no response. I figured out from reading other's advice, that the proportion of CBD to THC that I had was too small, insignificant actually, to impact Sophie's epilepsy. I am having a hard time figuring out where to get the right stuff, the Charlotte's Web, the Harlequin strains, as they don't seem to be available in southern California. I read about people packing up their bags and moving to Colorado or whatever state has more lenient medical marijuana laws. I feel guilty. Then I remember that I moved to California from my beloved New York City fifteen years ago for exactly the same reason: a possible better life for Sophie.
I'm not sure what the purpose is of this blog post other than to somehow hash out my conflicted feelings, try to rally myself to take another go at it. My heart is filled with happiness for the people who do, finally, find their miracles. Their children's seizures stop, they begin to laugh, their broken brains are given an opportunity to mend. Sophie? Sophie is still seizing, and my hope is like a hermit living on the top of some windy, sacred Chinese peak.
I don't have any advice...only to say, you've got a room here if you and Sophie need to come see what Colorado has to offer. Holding onto some hope for you.ReplyDelete
I have a friend in Oregon who grows medical marijuana and I'll ask her if she knows where/how to get it. Most of her property is currently burning to the ground thanks to the Douglas Complex fire, but she may know some other folks who can get either of those strains.ReplyDelete
Take what help is offered you here. And take the knowledge that you really are not alone on that windy, sacred, Chinese peak. I wish I had more than words, Elizabeth. All the time I wish that.ReplyDelete
FUCK. I was so hoping that this would work better and easier for Sophie and for you. I'll think too about what you can possibly do. There HAS to be a way, Elizabeth.ReplyDelete
I'll check around in Seattle for you.ReplyDelete
I wish I could just get it and ship it to you. No. I would fly it there myself and put it in your hands. Instead Im here praying for the miracle.ReplyDelete
thinking of you and your journey.... unfortunately here on the east coast there is little medical marijuana... sounds (again) like you know your way around this issue and expert status is what 18 years gets you...ReplyDelete
sending energy your way for whatever direction you choose.
( I wish it had worked for sophie right away)
You are not giving up hope...you are in the learning stage about this. I bet all the people who have had their "cure" didn't get it right the first time...ReplyDelete
When your hope is faint, or you don't feel it, those of us who love you can share our hope, and hold it for you, with you. We can pool our hope; you can have some of mine. Whatever the outcome of this new possibility, we will be with you, wherever you are.ReplyDelete
I have been educating myself on the chemistry of cannabinoids and how different ones help deal with different syptoms. Many have no psychoactive affect. The main one being explored beyond THC which is the main aspect that creates the marijuana "High" is CBD. This cannabinoid helps with sleep, pain relief and anti-seizure affects. We are extracting cannabis oil with a co2 extractor used to make essential oils,the purest way possible. Then we further purify the oil with a centrifuge to remove the solids, eventually ending up with the pure liquid cannabis oil. We recently did this process for another supplier of medicinal cannabis. Their formula was lab tested and has a very high CBD count, 30 mgs plus per capsule. We encapsulated the oil in a soft gel capsule, like a fish oil cap. They are marketing their product under the name endocapps CBD pill, I believe it is available in dispensaries in So. Cal.ReplyDelete
As always Elizabeth, my heart goes out to you and as others have expressed, I wish I could do something to help make this be the thing that works for Sophie. I am personally not surprised that you don't express a lack of hope much more often than you do but it is that determination and love for your beautiful child that makes your family extraordinary. I'm sending heartfelt wishes that Sophie and your family will experience some relief with the proper, higher doses of cannabis once you can get your hands on it. Sweet JoReplyDelete
I'm sorry to hear the medical marijuana hasn't worked for Sophie. Is there a chance it needs longer to take hold? In any case I hope with all my heart you find the proper mixture, or, if medical marijuana isn't the solution, that you find the correct one. You're a hero in my book!ReplyDelete
I'm picturing you as an alchemist working with some magical version of the mixer you use to make your amazing cakes. And then there is the alchemy of hope and love. Sending my hope and love to you and your family.ReplyDelete
I'm still keeping my fingers crossed for this and Karen said beautifully what I wanted to say but couldn't quite capture that there are those of us who can hold that hope for you when you get screamy many of us in fact. Also this hash out my conflicted feelings made me smile all over. There are people I can talk to in Seattle as well. Don't give up on this. Marijuana kept my bipolar disorder in check for eighteen years until my lungs said no more. I have yet to speak to my shrink about the medical form of it but I'm certainly absolutely considering it. I love you.ReplyDelete
Oh man... i don't know what to say to you. I'll carry some hope for you.ReplyDelete
oh, dear elizabeth, i think it's good to come here and rant and allow yourself to lose a little hope in order to open yourself up to this surge of caring. it's some crazy science, i think...the flow of energy shifts to those who need it most. take it in; take the offers; get your hands on the good dope; take what you and sophie need.ReplyDelete
karin said it beautifully, and i too pool my hope.ReplyDelete
I too would like to echo Karen's heartfelt message to you...."we will be with you, wherever you are."ReplyDelete
These are times when that word has made me cringe. Hope. It seems so fleeting but it is all we have.ReplyDelete
Hoping you find what Sophie needs and soon.
i have an idea in the bay area there are 2 dispensaries that i can think of that are doing target research siezures and children harborside and spark so hum seeds in humboldt and cbd project can connect . my experience is that northern callie way more versed in cbd southern callie more kush high thc hearing really excellent reports with both harborside and spark for the children you can reach me sheba love at email@example.com with all respect sheba loveReplyDelete
I hear you.ReplyDelete