Sudden. She played today. She colored today. She died today.
Unexplained. The switch just went off. Death. Final. Epilepsy. Caused by
her 3rd vaccination set. She wasn't seizing, just sleeping on daddy's
chest in the light of day on her couch, her favorite place in the world.
SUDEP kills.
This, the second message my friend Susan posted yesterday on Facebook, is about her precious teenage daughter, Cyndimae. Susan's first message earlier yesterday morning read:
My angel Cyndimae died SUDEP in her daddy's arms after 3 short no meds seizures.
I told Susan in a message that I was sending her love and would soon be in touch. All night long I thought about the girl—every time I woke to reposition my semi-restless, yet slumbering boy. At midnight I peered out a window to see a bright star shrouded in mist. I named it after sweet Mae.
I first met Susan and Cyndimae in early February of 2014, just before making my first batch of homemade THCA cannabis oil to treat Calvin's seizures. While Cyndimae sat on the couch with a coloring book, crayons and a blanket in her lap, Susan showed me a few tricks to making the oil. She'd already made at least one batch for her daughter, who was suffering from Dravet syndrome, one of the catastrophic forms of epilepsy which is infamously resistant to traditional medication. In quest of the right kind of cannabis to treat Cyndimae's epilepsy, the two of them had splintered their family by moving to Maine from Connecticut, sadly leaving Cyndimae's father and sisters behind.
With the help of cannabis oils, Mae, as she was often called, eventually came off of her pharmaceutical meds, which included the powerful sedative phenobarbitol. Her seizures were fairly well controlled with a daily mix of cannabis: THCA and THC, perhaps a little CBD, though I can't be sure, and a rescue med of highly concentrated THC. Mae continued to suffer transient seizures, particularly when she was sick, but overall became much brighter and more capable in the absence of the pharmaceutical monsters.
Though I've known of children who've died from Sudden Unexplained Death in Epilepsy (SUDEP), I never really thought it would take Cyndimae. But it seems the ravaging that years of seizures and powerful antiepileptic drugs may have been too much for her little heart to bear, and it makes me wonder how much more of that same stress Calvin can endure.
Throughout the day I thought of Mae and of the palpable adoration between her and her mother. After hearing of Cyndimae's death, everything Calvin did took on a new quality and meaning; my frustration with his antics was tempered and my patience lengthened because Mae's death hit so close to home. I tried harder than ever to live in the moment because, really, that's all we've got.
Yesterday, in Michael's absence, a string of friends showed up to keep me company and help out. Sarah stopped by with her son Jacob, Anne came to chat and stroll with me and Calvin, Lauren swung by to return my movie, Heather took Nellie for a run in the fields, then Matt and Connie showed up with their kids, plus chips and pita and a bowl of hummus. The stream of friends appearing throughout the day felt like a kind of celebration, and I was consciously aware that Susan and her family were being embraced by friends, family, and even relative strangers in the pediatric epilepsy community and the medicinal cannabis world. The outpouring of support for them has been tremendous, but no more so than the love and concern they've shown toward others all these years. Like a spark, it started with them.
Thank you, Susan, for being the indefatigable warrior mom you are. Thank you, Cyndimae, for being the bright star that you were and still are. You'll forever shine in our hearts and minds and remind us how to be our very best selves.
This, the second message my friend Susan posted yesterday on Facebook, is about her precious teenage daughter, Cyndimae. Susan's first message earlier yesterday morning read:
My angel Cyndimae died SUDEP in her daddy's arms after 3 short no meds seizures.
I told Susan in a message that I was sending her love and would soon be in touch. All night long I thought about the girl—every time I woke to reposition my semi-restless, yet slumbering boy. At midnight I peered out a window to see a bright star shrouded in mist. I named it after sweet Mae.
I first met Susan and Cyndimae in early February of 2014, just before making my first batch of homemade THCA cannabis oil to treat Calvin's seizures. While Cyndimae sat on the couch with a coloring book, crayons and a blanket in her lap, Susan showed me a few tricks to making the oil. She'd already made at least one batch for her daughter, who was suffering from Dravet syndrome, one of the catastrophic forms of epilepsy which is infamously resistant to traditional medication. In quest of the right kind of cannabis to treat Cyndimae's epilepsy, the two of them had splintered their family by moving to Maine from Connecticut, sadly leaving Cyndimae's father and sisters behind.
With the help of cannabis oils, Mae, as she was often called, eventually came off of her pharmaceutical meds, which included the powerful sedative phenobarbitol. Her seizures were fairly well controlled with a daily mix of cannabis: THCA and THC, perhaps a little CBD, though I can't be sure, and a rescue med of highly concentrated THC. Mae continued to suffer transient seizures, particularly when she was sick, but overall became much brighter and more capable in the absence of the pharmaceutical monsters.
Though I've known of children who've died from Sudden Unexplained Death in Epilepsy (SUDEP), I never really thought it would take Cyndimae. But it seems the ravaging that years of seizures and powerful antiepileptic drugs may have been too much for her little heart to bear, and it makes me wonder how much more of that same stress Calvin can endure.
Throughout the day I thought of Mae and of the palpable adoration between her and her mother. After hearing of Cyndimae's death, everything Calvin did took on a new quality and meaning; my frustration with his antics was tempered and my patience lengthened because Mae's death hit so close to home. I tried harder than ever to live in the moment because, really, that's all we've got.
Yesterday, in Michael's absence, a string of friends showed up to keep me company and help out. Sarah stopped by with her son Jacob, Anne came to chat and stroll with me and Calvin, Lauren swung by to return my movie, Heather took Nellie for a run in the fields, then Matt and Connie showed up with their kids, plus chips and pita and a bowl of hummus. The stream of friends appearing throughout the day felt like a kind of celebration, and I was consciously aware that Susan and her family were being embraced by friends, family, and even relative strangers in the pediatric epilepsy community and the medicinal cannabis world. The outpouring of support for them has been tremendous, but no more so than the love and concern they've shown toward others all these years. Like a spark, it started with them.
Thank you, Susan, for being the indefatigable warrior mom you are. Thank you, Cyndimae, for being the bright star that you were and still are. You'll forever shine in our hearts and minds and remind us how to be our very best selves.
 |
| Cyndimae Meehan and her super mom, Susan |
(sobbing) <3
ReplyDeleteWonderful writing as always. My heart goes out to this family. They are experiencing now what we dread every moment of every day.
ReplyDeleteShe's the fourth death this month -- it's just so shocking and horrible. This is a beautiful post, Christy. We will miss her.
ReplyDeleteThanks Christy for putting to words what many of us are feeling....Cyndimae is truly a bright star in our sky, and Susan is a star here on earth. I am always so amazed by the strength and kindness of our small tight community. Love to you all.
ReplyDeleteThank Heavens for you, Cyndimae. Your light is far and wide and transcends your time here with us. Your sword was a heavy one, sweet girl, but humbled and heartbroken, and with greatest reverence, we'll take it up and swash-buckle like mad until SUDEP walks the plank and begs for mercy. Play now. Rest now. Relax. I may never have the joy in knowing you, but i'm so proud of you. Shine on, Cyndimae.
ReplyDelete