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Showing posts from 2016

Gotta Let Your Soul Shine..

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...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

Good Morning Little School Girl

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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

Sorry, Not Sorry.

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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

Melt.

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