No sooner had those photos of Sophie gone up and out, curls flying (scroll down to see), than she had three big ones, back to back, on this rainy Los Angeles morning. But, you know what? I'm not going to be like my paternal grandmother, dressed in black and praying that I die, convinced that anything good, uttered, will turn to bad. I'm going to defy the jinx, stomp the ego that believes it can control every little thing. I'm going to exult in the fact that Sophie has had many good days, a number of good days, where she has had no seizures to speak of other than an occasional jerk. That's nearly a week of dinners free of tonic-clonic episodes, of mornings without clammy hands and days without clusters. Yes, nearly a week, the longest she's been seizure free in as long as we can remember. Sophie has NEVER had a honeymoon period on any drug, ever. Remember that she is taking a tincture that is not even the ideal proportion of CBD to THC, that we are waiting for Charlotte's Web, and that given this promising start, we have every reason to believe that she will continue to find relief, maybe even more relief.
Thank you for all your happiness, for sharing in ours.
OK and I will rationalize even further and say that after so many years of that short circuit (or however we can describe a seizure) it makes sense that it might take a while for her system to reprogram itself. I have no idea if that makes any sense but that's what I think.
ReplyDeleteI was thinking the same thing Lisa wrote.
ReplyDelete{{{{{{{{{{{{{{{Elizabeth}}}}}}}}}}}}}}}
YES. YES. YES. xxoxoox, christy
ReplyDeleteOnward and upward. Can't wait for you all to get the correct tincture. I predict magnificent things!
ReplyDeleteFuck the jinx.
ReplyDeleteDear Charlotte, Spin faster.
Yes. It's working. One day out of seven. Keep faith. Write it all. There is no jinx. Only what is. And feathers.
ReplyDeleteSo happy for all of you...such good is coming your way!
ReplyDeleteI am trembling with a sort of joy. I'm not even kidding you.
ReplyDeleteI second Denise above and say Fuck the Jinx. In fact, I am chanting it as I type.
ReplyDeleteNo superstition, no magical ways to have to guess at. There will be good days and bad days. Her longest stretch without seizures--absolutely incredible. It's happening. It's working. I am so grateful.
ReplyDeleteAre you still seeing increased alertness and smiling on her good days? Such wonderful news...
ReplyDeleteThings are headed in the right direction and like any medication it takes some tweaking. I have been reading your blog for awhile now and this is the best news I have read so far.
ReplyDeleteI don't believe in jinxes. Hoping you get the tincture she needs.
ReplyDeleteI hope that Sophie continues to have fewer and fewer seizures. As you said, this is not even a big dose, and not even the "big guns" formulation. There is lots of room for improvement.
ReplyDeleteYour day in Malibu Canyon looked luminous on many levels. I'm so glad that you and Oliver got to experience this together. It sounds as if your decision about his schooling is already confirming itself.
Loved picturing Michael in the Swiss Cavalry - the bicycle aspect conjures up so many fun mental images!
xoxo
Wishing Sophie a peaceful weekend. So happy that overall, you are seeing success and a respite from the seizures. As a mom of a daughter with autism, who has also been failed by medicine, these posts give me great hope. Thank you, Elizabeth.
ReplyDeleteI'm hoping for you and for Sophie. For the sea-change.
ReplyDelete