Posts

Showing posts from 2015

Four!

Image
We just celebrated Josie's fourth birthday! Our Thanksgiving gift. Josie loves to celebrate her birthday, kind of like her mama. We celebrate all month. And why not? On November 23rd, we joined my beautiful friend and spiritual angel, Macha Einbender , for her weekly meditation held at the historic, Sands Point Preserves castle. Macha led the small group through a guided mediation and centered it on Josie. We visualized Josie running around the most beautiful field next to a body of water, where dolphins swam. I love to visualize what Josie will do one day. I believe in it. My sister had a poster on her bedroom wall growing up with a picture of two feet, pointed in worn out ballet slippers. It said, "If you can imagine it, you can achieve it, if you can achieve it, you can become it." That was the one quote I saw every day, not to be diluted with the millions of quotes we see every day on Instagram and Facebook. I feel like the quotes on social media walk me thr

Did you give her the Marijuana?

Image
That time a new friend overheard me talking to Josie's nanny on the phone and was like, "huh?" I said, "Oh did you just hear me ask if Josie had her marijuana today? I'll explain." It's been more than two months since we started Josie on CBD oil, the marijuana-derived oil that has been called the "Miracle Cure for Children with Severe Epilepsy." I've read the stories and watched every local and national news report on Charlotte's Web. I was hoping this was going to be the answer. I even thought about moving us to Colorado until it became legal in New York. We'd have the magic bullet. The idea was that we'd see drastic improvements from the CBD oil and then we could start to ween her off the other three heavy-duty anti-seizure meds she is on. Well, I can't say it's the magic bullet for Josie. And I can't say it isn't helping at all. The one thing I do know is that I don't know what is helping or not.

I Say Hello!

Image
When the doctor told us, "she'll probably never speak," my only thought was, You don't know that. Not even four years old and Josie is all about greeting people with a great big "hi." Of course, it happened while I was away! Janice, our nanny (our Janny), sent me a video of Josie's first word. It's not perfected yet, but she is rounding her mouth and repeating the sound with absolute purpose. I was at a music festival in Virginia that our company was a sponsor of when Janice sent me this video, and it was hands down the greatest thing I heard all weekend. Sorry Robert Plant and John Bell, but this was better. Note: This was just the first time she said it, it's gotten clearer every day! New video coming soon. ** The song title of this blog is none other than the Beatles "You Say Goodbye, I Say Hello." Or "Hi," rather. **

Believe

It's the end of August now and things are still getting better in the sweet world of Miss Josie girl. She's getting stronger. No "milestones" reached yet, but she is absolutely stronger. She is more connected to everyone around her. And the seizures are mild. We're heading in the right direction. "Believe" is a song from My Morning Jacket's latest album The Waterfall . I've become obsessed with this band, and can't believe (no pun) it took me so long to pay attention to them. Jim James is from another planet. The band is just amazing. "Believe" is actually my least favorite song on the album, but the word is among my top favorite words in the English language. Yo creo - it's pretty nice in Spanish too. So, the big news is.... (drumroll, please).. We got the medicinal hemp oil (CBD) for Josie to try as an anti-seizure medicine. I've written about it before, the marijuana-derived cannabidiol (CBD), which is stripped