she’s improving every day and the doctors think I’m crazy


Lydia continues to be increasingly alert. She looks around and seems to notice things like never before. Yesterday she stared intently at our Giant Christmas Tree for at least 20 minutes. Granted, I really loaded the thing up with a lot of lights to tempt her attention and it is so big it’s hard to see anything else when you are near it.

She was also very smiley and interactive last night. She thought Mark had a pretty funny trick, giving a full ear-to-ear smile, when he cooed and loudly clicked his tongue. Mark says this moment was his first real exchange with his daughter, and it was a long wait. Totally amazing. I am floored with each tiny gain.


I told one of her neurologists today about the marijuana oil. I really like this doctor but he didn’t ask how much of a reduction in seizures we were seeing, he didn’t ask how much we give her or what kind, or if there are any side-effects. He didn’t ask how we felt about it all or say, “so happy for you!”. Instead he said there was no FDA approved testing for that kind of stuff, that we couldn’t ever know what we were really giving her, or know where it comes from, that it could be full of toxic chemicals and for all we know it could be “moose poop.” I just nodded ruefully. But I wish I’d said, “Dude. Does moose poop work? Hook me up.”

Then the strangest thing happened after the appointment. We were sitting alone in the room, waiting for our visit summary, when a woman I’d never seen before walks in the room and closes the door. I just sort of raised my eyebrows as she studied me for a moment and only then introduced herself as the neurology department psychologist. Wha?!

Do they think I’ve lost my mind because I’m giving my daughter marijuana oil?

She asked if there was anything she could do for me. I asked her to explain what she meant. Dangerous waters here. I already feel I am taking a big risk by telling everyone and letting it be part of her medical record. I just think other parents-with-hearts-that-are-breaking-because-nothing-has-stopped-the-seizures-in-their-babies should know our story. Right? Is that so crazy?

Anyway she said she just wanted to see how we were adjusting and other such pleasantries that would been much more useful a year ago. I gave pleasant responses in return and she left. But my mind was spinning. What were they going to put on MY medical record? Yeesh. I was afraid to even ask or they might put me down for paranoia.

But I just can’t keep a secret, so when the gal when brought the visit summary notes a minute later I said, “who was that lady – do you guys think I’m crazy?” She laughed and reassured me that the psychologist visit was totally random and that she just happened to be making patient visits today. Riiiiight. She also said that actually they felt we were one of the more well-adjusted families they’d seen. Oh good. So there aren’t any guys in lab coats right outside the door? I mean besides the regular hospital ones I guess.

Still, I couldn’t help but exit the room only after glancing down the hallway, just to make sure.

Here are some other clearly crazy mamas who have participated in the program that we are doing. They are the reason we got involved and we have every reason to thank them for being brave and sharing their stories. Please follow the link: