He's had them at dinnertime, in the bathtub and in the johnny-jump up. He's had them in the hospital, at school, at the doctor's office, on the highway, in the grocery store and on an airplane 30,000 miles high. He's had them while walking and crawling and napping and eating. He's had them all day long and into the night. He's had them on Christmas day and Thanksgiving and on my birthday and Michael's birthday and probably on his own birthday. For almost two years he had these seizures exclusively between 5:00 and 6:30 pm. Now he's having them at 8:30 p.m. and 3:30 a.m. and, since yesterday, upon waking at 6:00 a.m.
They're silent these days, Calvin's convulsions barely perceptible, just the subtle click and swallow of a gag followed by a few constricted gasps for air. During the first half of all of them he stops breathing and his lips, fingers and toes turn blue. They last upwards of three to five minutes. It's hard to tell when they are over. His eyes roll then lock and then search the big black nothingness of the seizure. He looks frightened, lost.
He's had hundreds of them, likely thousands. Perhaps his hysterical laughter is a seizure; they call those gelastic seizures. Maybe when he is poking his eye he is having a seizure, or when his hands and ears turn crimson red or when he whines or cries or falls off balance or shrieks or stares incessantly at his fingers. We don't know for sure.
In all he's tried ten antiepileptic drugs plus two rigorous dietary therapies; none has stopped them from coming. The fact that puberty is on its way in a few years scares me. I fear his seizures will burn out of control like a wildfire unless we dampen them down now. Statistically, the chance another pharmaceutical will stop his seizures has dwindled to almost nothing, which is why I am trying to go green, hoping medical marijuana, which has helped so many other children with uncontrolled epilepsy, will work for him. It is legal in the state of Maine. I've got my card and I'm this close to getting the right strain and/or tincture for my boy, the kind very low or absent of any psychoactive qualities. But when I do, and if it works, we'll be incarcerated in this state, unable to travel legally with Calvin and his medical marijuana tincture without fear of being arrested for possession.
So, a small group of moms in Maine, we dragon moms, we moms de guerre—a term my friend Charlie came up with—have a friend who started a petition to legalize marijuana, to take it off of the list of schedule 1 drugs so it can be researched and readily available to our children, some of who need it—literally—to save their lives because nothing else works. We want it to be researched, to be able to receive the appropriate strains and tinctures in the mail and not have to uproot our families and become refugees in states where it is legal.
Please help us by signing this petition, then share it for others to sign. We need 100,000 signatures by January 28th, 2014 for it to be considered. That's nearly 3,400 signatures for every day in this month. Please click below and sign up. You could be saving a child's life, and you never know if that child just might be yours.
They're silent these days, Calvin's convulsions barely perceptible, just the subtle click and swallow of a gag followed by a few constricted gasps for air. During the first half of all of them he stops breathing and his lips, fingers and toes turn blue. They last upwards of three to five minutes. It's hard to tell when they are over. His eyes roll then lock and then search the big black nothingness of the seizure. He looks frightened, lost.
He's had hundreds of them, likely thousands. Perhaps his hysterical laughter is a seizure; they call those gelastic seizures. Maybe when he is poking his eye he is having a seizure, or when his hands and ears turn crimson red or when he whines or cries or falls off balance or shrieks or stares incessantly at his fingers. We don't know for sure.
In all he's tried ten antiepileptic drugs plus two rigorous dietary therapies; none has stopped them from coming. The fact that puberty is on its way in a few years scares me. I fear his seizures will burn out of control like a wildfire unless we dampen them down now. Statistically, the chance another pharmaceutical will stop his seizures has dwindled to almost nothing, which is why I am trying to go green, hoping medical marijuana, which has helped so many other children with uncontrolled epilepsy, will work for him. It is legal in the state of Maine. I've got my card and I'm this close to getting the right strain and/or tincture for my boy, the kind very low or absent of any psychoactive qualities. But when I do, and if it works, we'll be incarcerated in this state, unable to travel legally with Calvin and his medical marijuana tincture without fear of being arrested for possession.
So, a small group of moms in Maine, we dragon moms, we moms de guerre—a term my friend Charlie came up with—have a friend who started a petition to legalize marijuana, to take it off of the list of schedule 1 drugs so it can be researched and readily available to our children, some of who need it—literally—to save their lives because nothing else works. We want it to be researched, to be able to receive the appropriate strains and tinctures in the mail and not have to uproot our families and become refugees in states where it is legal.
Please help us by signing this petition, then share it for others to sign. We need 100,000 signatures by January 28th, 2014 for it to be considered. That's nearly 3,400 signatures for every day in this month. Please click below and sign up. You could be saving a child's life, and you never know if that child just might be yours.
We petition the Obama administration to end the prohibition of marijuana by removing it from the list of controlled substances in the Controlled Substances Act. |
Signed and forwarded... but I was only number 277 :-(
ReplyDeletethanks, ted. i know. it doesn't look good at this point. : (
DeleteCan non-US citizen sign it?
ReplyDeletenot sure. give it a try! i think someone from australia was successful. thanks!
DeleteWe've joined your war....sent the petition on to a jillion people. Didn't hear of it until this morning....These things can spread like wildfire once they get going, so like the boy scouts used to say "Each one teach one" and we'll get the job done!
ReplyDeleteI signed the petition. I was wondering if you might blog about the steps to getting your "green" card and the whole process of finally obtaining the right tincture actually. I'm a firm believer in learning from those who go before you! Hoping it becomes legal in NY soon, though I'm thinking it will be more difficult for us since a medication has finally controlled Bethany's seizures.
ReplyDelete