Josie's Journey

Josie didn't get into the school I gushed about in my last post, the Henry Viscardi School. I'm not going to lie. It was disappointing. They had us go there for two days of evaluations and really sold us on the school. We spoke at length to the medical team about what to do in the case of a seizure. They wanted every detail of her medicines, and so much more. I really think they should consider changing their process. Why not just evaluate the child first? Don't give parents false hope. And then, if you accept the child, bring the parents in to discuss everything the school needs to know about that child. There was more that disappointed me in the way they handled it, but no point in writing about it. Their reason for not accepting Josie was, "We don't feel this is the right program for her." Ok, so why did you spend so much time telling me how the school has expanded its program to meet the needs for "kids like Josie." We saw a boy we knew fro...

It's been too long since I've posted and I have so much to share! 1. So, after I wrote the last post saying that Josie hadn't had a seizure since Dec. 30th, she had one the next day. Go figure. That was in early February. She had another in early March. That's two seizures in the past three months! And to be honest, the second one is questionable whether it was a seizure or not. Two mild seizure in three months is an incredible thing to report. Since her seizures started in April of 2014, she averaged four a week. For the first six months, they were often grand mal seizures. As anyone who has been following this blog knows, we had been continuously adding and changing her meds to find the right cocktail to stop them. As I said in the last post, I'm crediting this to good 'ol marijuana! Who would've thought the one thing that saves my child's brain is the very thing kids grow up being told to stay away from. I swear I may go to Jamaica and pray to...

I'm afraid to write this, but I'm going to put superstition aside and share the good news that Josie has not had a seizure since December 30th, 2015. Yup! This is her longest seizure-free stretch since they started in April of 2014. It could be due to the CBD oil. She's still on a pretty heavy arsenal of meds on top of the CBD oil, but I do believe it's the CBD oil that's helping the most. Ain't that kind of funny, Mom? Soon, we may try dosing down on some of the other meds to see if we can reduce them. That would be fantastic. It gives me such a "peaceful easy feeling" to think of Josie being seizure-free. Her brain is calm and she can move forward cognitively without being set back over and over again. Of course, that post title is a tribute to Glen Frey. May you rest in peace. And may the great David Bowie and Maurice White also rest in peace. Sigh. No more for a while, please! Some recent photos for your cuteness pleasure... Oh those pigt...

"What a retard." "Are you retarded?" I hear the word used all the time. Many of my friends say it. People I'm related to say it. I've even heard another special needs mom say it. Yes, I hate it. But, no, I don't blame the people who use it so freely. It's just the way they (we) grew up. I've said it my fair share in the past. It was probably part of my regular vernacular for a while. It's always been a commonly used word and some people just use it more than others. I cringe. I want to tell the person not to say it around me. And if you're close enough to me, I will tell you not to say it. The real reason I'll tell you is not just because I find it offensive, but when you say it, it's clear that you really don't know any better. And as an adult, or even a kid, in 2016, you should know better. Look around and see the rise of children with autism and other conditions and disabilities. Chances are, your family member, ...

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...

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....

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. **