Josie's Journey

...Shine 'til the break of day. An update from Josie's school Josie's teacher has been sending me some photos of our little school girl. She writes, "Josie brings so much joy to our classroom. From the minute she arrives, she's got us all laughing." That's my girl. Life isn't what we planned, right? We sure didn't plan that Josie wouldn't be able to walk into her kindergarten classroom by herself or talk to her friends, but if she can laugh every day and be someone who brings joy to those around her, well, she's doing just fine. The soundtrack of Josie's Journey: "Soulshine" by The Allman Brother's Band So why the title of this post? Soulshine is one of my all-time favorite songs. It's originally an Allman Brothers tune, written by Warren Haynes with vocals by Gregg Allman. Warren's kept it strong with his Gov't Mule version. So get this... in two nights in NYC, there will be a benefit concert celebratin...

Today is momentous. I am writing this from the second floor, in the boardroom aka "the parents waiting room," of the Little Village School while Josie is downstairs in her Kindergarten classroom. Josie's first day of school. Josie's first day away from home. Throughout 2014, when Josie's seizures were bad, really bad, and we were in and out of the hospital, it was hard for me to envision this day. The idea of handing her over to spend the day without us nearby, or without her Janny (Janice/nanny) was unfathomable. And here we are. I'm sitting in this boardroom alone, surprisingly. I guess it's not every child's very first day away from home. Yup, this is my first rodeo. People from the school, including the school director, have been coming in to give me reports. "Josie is doing great, she's laughing hysterically at animals noises." Obviously, who doesn't laugh when adults make animal noises? Josie's new PT just came b...

I'm officially a published writer for The Mighty! It's an incredible site with the tagline: We face disability, disease and mental illness together. It's user generated content, generated by people who are faced with the aforementioned challenges. I feel very lucky to have a platform to talk about Josie and Foxg1, all while raising awareness and potentially spreading some positivity to other parents of special needs children. CLICK TO READ THE STORY HERE Or read the text here: When I Hear These 3 Words as a Special Needs Parent Is it possible, for what kids with FoxG1 lack in terms of cognitive and physical ability, they make up for in cuteness and sweetness? You might be reading this and thinking, how is there anything cute about a severe, rare, neurological condition that hinders the ability for children to do most things? Well, let me tell you about my FoxG1 girl, Josie. She was born with this doozy of a genetic disorder. She is four-and-a-half-years ol...

Maybe when things are going great, I feel less inclined to blog. No news is good news, as they say. But, there is so much good news to report. Where do I begin? These are all the things I want to share: 1. Josie is going to school in September! 2. She has been seizure-free for three months now! 3. She's so much more alert and present and just happier than ever! 4. Tanner has melted my heart with the things he's been saying lately. 5. A music group I'm a member of held an event and raised money for Foxg1! All of the above deserve a separate post, but I'm going to cover as much ground as possible while I'm here. 1. School. It's happening. Josie will be going to the Little Village School in September. Oh the range of emotions I've been experiencing lately. It really hit me hard when her therapies at home came to an end. All these amazing therapists that have been coming over three times a week for the past three years will no longer be coming over ...

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, ...