When I put on Sophie's socks in the morning, she doesn't startle when I touch her foot and then go into a seizure.
When I put on Sophie's pants in the morning, she doesn't flex her foot so rigidly that I can't get her pants leg over it.
The Los Angeles Times newspaper reports that the case against the archdiocese of Los Angeles regarding pedophile priests and Cardinal Mahoney's specific participation in shielding these men, shuffling them around the church and then hiring legions of fancy lawyers to defend him is now settled. Many of the abused will receive monetary damages, the Catholic church had to borrow from cemetary funds to pay the damages and Cardinal Mahoney never went to jail.
When she wakes up in the morning, Sophie doesn't spend forty-five minutes having myoclonic seizures.
Sophie has no body odor or clammy hands and feet.
Not a day goes by that some article or another appears about medical marijuana and its effects on epilepsy. I'm noticing that The Powers That Be are rattling their sabers, bemoaning the lack of evidence, rattling on about double-blind placebo studies blah blah blah and never once mentioning that our children have been subjected to dozens of drugs in what surely must be an experimental fashion as the combinations are near endless and no one seems to know apparently what these drugs do and have done to our children's precious bodies.
The boys and I have eaten dinner with her for weeks and weeks, and we haven't had to go into rescue mode when Sophie has a seizure at the table.
Red plants produce green conical blossoms that break into yellow flowers all on their own.
My favorite medical expression on the inserts of anti-epileptic drugs: Mechanism of action unknown.
You should read these two beautiful posts before the month of February is out:
American Promise
I Just Looked Around and He's Gone
Reader, what have you noticed today?
I'm wearing the top part of some pink pajamas with black polka dots that I bought at Walmart for $6.00. I'm going out to breakfast with Alice in them Alice who is very fashionable. It was my second time at Walmart and I felt ashamed to be in there even though that's where poor people go. My son told me you look good which is a miracle. I posted a HD poem and took it down after five minutes because it made me so uncomfortable to see it. The sky is blue in Seattle and I missed green so much when I was in New England that it made my heart break open.
ReplyDeletelove,
Rebecca
I have noticed and read and internalized those two posts you linked and they are the continuation of a conversation I have been having with myself and others here in the state of Florida where the lives of young Black men are threatened by their very being young and Black. I have been brought to my knees with humbleness over what it must be like to be the parents of those men and others who live in this country (not just Florida!) who are in such constant peril because of their skin color.
ReplyDeleteI have noticed the azaleas in full bloom, purple against the green leaves. I have noticed the way water feels on my body in the tub. I have noticed the way the light changes moment by moment in my yard, the birds at the feeder, greedy for seeds.
I have noticed and noted much with pleasure today. You being part of that. And Sophie. The mermaid and her mermaid mother.
I noticed that the grey air and icy snow in our small valley signals some of the worst air in the nation and tends to make me feel trapped in the house.
ReplyDeleteI also browsed the links you shared and thought of another Sundance film you might be interested in. The HBO documentary ‘The Crash Reel’ A powerful story which is ultimately about family along with many other themes… disability, health care, friendship, risk, trust…
So happy to hear about this! Gary sent me an email yesterday titled "Elizabeth," inquiring about you, if you had heard about this-
ReplyDelete"Dozens of families are moving to Colorado in search of an oil made from a special strain of marijuana called Charlotte's web. They hope it will help children suffering from multiple seizures.
Growers say the oil contains "low" levels of the chemical THC, which gets users high. But it's "full" of cannabidiols, CBDs, which are used to treat some medical conditions."
Sophie, darling, precious, beloved Sophie. What must it feel like to have this inner calm at last, to be in the world not seizing? I am so happy to read the parts of this post that are about Sophie. And I am so glad, Elizabeth, that you are here to give this testimony. You and Sophie and your three men. Thank you.
ReplyDeleteI love this post. The line about red plants and yellow flowers touches a deep part of me, probably beyond what you intended.
ReplyDeleteMedicine has a long history of ignoring the wisdom of women and mothers. Midwifes are called witches, marijuana is called dangerous. Well we know better and we won't forget.
I could not be happier for you all. Most especially your beautiful Sophie.
ReplyDeleteI have noticed that despite life circumstance, even the most dire and difficult, if hope can be clung to, and a light, even a glimmer in the darkness can be seen, we can endure.
Sophie's ease and relief... So wonderful.
ReplyDeletewv: entrusted
So happy for you and for Sophie. And for your boys: may they not have to helplessly watch their sister seize ever again.
ReplyDeleteWhat have I noticed today? Blue sky and sun and warmth (warmth!) after an icy rain, a feeling of bleak emptiness after learning of the death of a friend, and the sweetness of peaches.
I'm so thankful that the marijuana is helping Sophie. What a relief it must be. Katie's never had a seizure but I'm thinking it would make me tense, ALL THE TIME, if she did.
ReplyDeleteWhat have I noticed today? It's snowing lightly and the days are getting longer. Last night I looked up my antidepressant and noticed one of the side effects is failing memory. How could I have forgotten that?
My sense of humor remains intact, even though my memory is shot:)
I am noiticing that your job as a mother and Sophie's life has improved dramatically since CBD has begun. I am stuck in a school science drama w/ my son that probably has no implications but I imagine it will effect his entire future. The snow is higher than the mailbox and spring can't come too soon on the east coast .. and yes, i need to excercise so I can become "unstuck".
ReplyDeleteI noticed the power of hope, a brilliant mother who does not stop fighting for what is best for her beautiful daughter and her sons and what that leads to. I noticed that a big part of me distrusts drs and a bigger part hates insurance companies. I know racism is far from gone. I noticed that I like to sleep. Sweet Jo
ReplyDeleteElizabeth, every time I read these posts about how well Sophie is doing I am just so glad. The very air in your home must feel lighter for all of you.
ReplyDeleteI noticed how beautiful you look on your profile picture. I noticed that you look healthy and vibrant. I noticed that today and every time I see your little profile pic appear on my blog.
ReplyDeleteThank you for the kind link. You are so wise and so smart. Every time I think about people like you and Ms. Moon and Angella reading what I write I feel deeply moved. I am glad for this community. Our community.
One more thing: I noticed that comments post on PST for the time stamp. I want you to know that I don't wake up at 3am to comment. It's usually six a.m. here in Atlanta when I'm commenting. Didn't want you thinking I had terrible insomnia!
As a reader, I notice I look forward to your every post.
ReplyDeleteMechanism of Action Unknown has book title written all over it.
ReplyDeleteThe best news in weeks and weeks. xoxoxox
ReplyDeleteYou must be in freaking heaven! Such good news following the sad news about Maggie.....
ReplyDeleteDr Devinsky gave a webinar the other night on SUDEP. Will look into seizure monitors (aside from our dogs) and ask
ReplyDeleteEvie's doctors about a nasal spray--whether it can replace rectal Diastat. Do you know? How can I ever go out of town for respite? How many people will it take to replace me? How can I leave Evie with virtual strangers? The first questions to Dr Devil-insky were about medical marijuana. Instructed by Writer's Almanac this morning I am now watching Kirov Ballet perform Swan Lake: http://www.youtube.com/watch?v=9rJoB7y6Ncs
I am so happy to hear that Sophie is thriving, that you all are thriving….and that, dear friend, sounds like good medicine to me. I am noticing how your words here have a powerful relevance to me.
ReplyDeleteI am so happy for you and for Sophie and for the boys and for the chef. You have a hopeful tale to tell - your voice will help to move this mountain.
ReplyDeleteToday I noticed the way a friend closed her eyes just before saying something very important and from her heart.