Josie's Journey

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 summer.  That was g

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