Monday, October 5, 2015
The Anecdotal Present
Who cares whether the new toys from Ikea are meant for young children? I felt only a twinge of sadness today when I roamed the aisles and wondered whether Sophie would still like these things. She had something similar years ago, but I had to give them away when her seizures got so bad. I was always afraid that she'd have an atonic drop and slam down into them or otherwise hurt herself. Over a period of about ten or twelve years, Sophie cut her head open at least five times, needing stitches, knocked out a couple of teeth, one permanent, broke a tibia, cracked a wrist, cracked her nose and had countless bruises, black eyes and contusions. It's the little things, the small improvements, that mean the world, and these aren't the things that generally impress the neurologists. That Sophie's seizures have been reduced to where she can safely play with some toys is probably proportionate to our successful CBD story being reduced to anecdote, at least with the neurology community and the ridiculous marijuana naysayers. Hell, the small improvements might not impress those of you who are terrified of disability, who can't imagine either being so or caring for someone and still having a fulfilling life. We live in a culture that often doesn't prize difference, particularly the cognitive kind. How many times have you heard or thought At least I don't need a wheelchair! or I could never handle a child with a disability. I realize that there's a learning curve, and I'm grateful to be at the end of it. I probably would have wanted to kill myself twenty years ago -- well, maybe that's a bit harsh and insensitive -- if I knew I'd be picking out baby toys for my young adult daughter. I'm not sure I would have been able to keep on keeping on, which is probably a testament for all of us, no matter our situations, that living in the present is all we can do. If you pile on some gratitude as you're basking in it, all the better. And if your present isn't so great, be grateful that it's just for now and will pass.
Update on Vimpat Withdrawal: So far so good, although Sophie seems really tired and even depressed. She has a lot of weakness in her right leg and doesn't want to walk on it very much. She isn't having seizures, though, which I will attribute to the emergency THC and CBD. Otherwise, I'd have to blame the Vimpat and then I might really off myself as we kept her on that damn drug for more than seven years.
Posted by Elizabeth at 7:48 PM
Labels: musings, neurologists, seizures, Sophie, Vimpat, withdrawal
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I am grateful for your last sentence of this post, that if your present isn't so great, just be grateful that it will pass... And your words about living in the present because who knows who would have made it through their trials. I'm glad you've made it. You have been an inspiration, a teacher and am amazing mother to your children. As usual, Sophie looks beautiful.ReplyDelete
From what you've described of how she uses beads, I'm glad she has these new meditative distractions; may theyReplyDelete
soothe her nervous system, like knitting or a worry stone.
I love that interpretation -- a nice change from the "stimming" one --Delete
I feel a sadness weaving through this. The small gains are huge. Anecdote is truth.ReplyDelete
Yes. Sadness can accompany so much -- and its eradication so elusive.Delete
All I know is that the look on her face, of interest and fun, is priceless!ReplyDelete
Exactly! She was really happy to see these simple new toys!Delete
There is a look of pleasure on Sophie's beautiful face that was a joy to see this morning.ReplyDelete
Sophie looks happy and interested, both good things.ReplyDelete
I often forget that things pass. Thank you.
I think we all forget and must remind ourselves to remember, lily cedar.Delete
She looks happy and content. I am grateful for your writing.ReplyDelete
I like what A said. That the toys can be meditative for her like knitting is for some of us.ReplyDelete
I'm also so glad that the worst of the Vimpat withdrawal seems to be over.
I am glad I know you, mostly.
And I, you.Delete
She looks so pleased and happy!ReplyDelete
Vimpat has been our saving grace, at least for the moment (I think it was actually you who recommended it to us), but as they always say "your mileage may vary." I"m glad that it seems that the worst is over!
I'm glad to hear that it's helping your daughter, Kira. I think long-term use is probably problematic, so it's good to be off of it, AND we do have the CBD on board which makes it all manageable!Delete
It's great to hear that Sophie has weathered the Vimpat weaning, her hives have gone and she is again seizure- free. She looks great in the photo: Regal, calm and focused on the toys.ReplyDelete
I too am so accustomed to buying C. babies/children's toys that I don't even think twice about it. Her chronological age doesn't really feature in my thoughts.
That's not to say I don't still harbor hopes for an improvement that will blow the neurologists' minds. Sometimes I vividly dream she's walking or speaking.
Do you have those dreams?
I can't wait to see that documentary featuring you. When is it expected to be released?
I don't really dream that much about Sophie, but I do hear from other people all the time that they've dreamed she's walking and talking! Isn't that strange? It's like others carry that hope for me? Maybe the subject of a blog post...Delete
The documentary is actually not featuring me. My "interview," as well as those of a couple other caregivers is being aired as a fill-in -- the doc Mimi and Dora is being featured, but it's shorter than the PBS airing time, so they're complementing it with other stuff. I look forward to seeing it, too!
Honey, I just love you this morning. For all of it. And because you talked about your 'jowls' for the PBS thang. That is not me in the mirror, it's my damn mother.ReplyDelete
You make me smile, snort and laugh.Delete
i thought of you today, as i was driving, the radio playing the usual italian station, a current hit (in Italy) on ... my listening to the music on the radio is usually very 'shallow', I sort of register a background sound, but don't really pay any attention to words. but then for a split second I tuned in to the refrain, as it was singing "we're the new americana, high on legal marijuana', and before I could determine whether it was annoying content my mind had already drifted away. 'Living in the present is all we can do.'ReplyDelete
I'm glad to hear the withdrawal is proceeding better with the help of the CBD and THC. And I'm glad Sophie is digging the toys, as she certainly seems to be!ReplyDelete
Such a beautiful photo. I see joy.ReplyDelete