Josie's Journey

  Josie was born the day before Thanksgiving 11 years ago and truly defined the meaning of giving thanks. Allow me to rattle the reasons why I am thankful. I am thankful for her pure joy. Her resilience. Her love. Her strength. Her energy. Her silliness.  I am so thankful that she gave me a purpose that I would have never known.  I am thankful that she gives me the courage to live my purpose, not only for her but for every child and adult in the world with FOXG1 syndrome , and more.  As a parent-led organization, we are actually improving the landscape for rare disease drug development. Why? Because we have no time to waste. We are helping contribute massively to science for major neurological diseases like autism, Alzheimer's, brain cancers, and more. No joke. Our work has the potential to solve major disorders that affect millions of people and knowing that fills me with even more motivation and inspiration - and gratitude.  I was able to dive in because of ...

Josie (sort of) Goes Back to School. The beginning of September and our social media feeds are covered with those adorable back to school photos. I do it too - every year. I stick to my non-crafty-mom schtick - a simple piece of note pad paper with a sharpie drawn - First Grade! Second Grade!  You get it. I got Tanner to hold it up this year despite his 14-year-old, stop-taking-pictures-of-me attitude.  He did it with a fake smile and his breakfast in hand and oh how that warmed my heart. For Josie, this year gave me incredible pause.  Well, first of all, she's not even going back to actual school yet. Since the pandemic started in March 2020, she has been home.  The school nurse she had for many years found another job and now isn't available.  Josie requires a nurse to come to our house, ride the bus with her, and stay with her all day until they return back to our home around 4pm. The agency found a nurse for Josie to return to school for a few weeks this sum...

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...