Josie's Journey

What would inspire me to come back to this blog after nearly four years since my last post? A Facebook comment of course. A friend from elementary school commented on a Facebook photo of me and Josie, "I miss your blog." Those four words really hit me. I needed them. I loved keeping this blog. I wish I hadn't stopped because this journey sure could use some real-time journaling! So, I'm back. Anyway, remember when I was just searching for Josie's diagnosis? Remember when there were only 93 people known in the world with FOXG1 syndrome? Remember when the geneticist didn't really know what FOXG1 was? Well, fast forward to today and it's a different story. There are now about 900 people known with FOXG1 syndrome.  Introducing the FOXG1 Research Foundation. I did mention in my last post in 2017 that I launched the FOXG1 Research Foundation     along with the yin to my yang, Nasha Fitter and a team of amazing FOXG1 parents. Four years later and we are the gl

"When you're lost, you can look and you will find me... time after time." It's been a long time since I've written here. Over a year. I haven't abandoned Josie's Journey blog. Maybe I've just been too busy living Josie's journey that I haven't stopped to write about it. Or maybe every time I sat down to, I just didn't know where to start. To use the cliche that we were forbidden to use when I worked at CNN: what a difference a year makes! Cliche or not, it's so damn true. Or is it? If you think I'm going to say Josie is now walking and talking and completing the Sunday New York Times crossword, well.. a year didn't make that much difference, but here's a brief recap of what we've missed in this lil 'ol blog: - Josie is in her second year of school! First grade, baby! She loves it. - Josie got a g-tube (feeding tube) in June. I was holding off with this for as long as I could, but it has been the greatest t

...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