A Fifth of Beethoven

Josie (sort of) Goes Back to School.

Josie's starts fifth grade

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 great! She loves the socialization. The long days wipe her out in a good way. She sleeps so well! That nurse was only available in the summer and  the agency hasn't found a nurse, so Josie is still home doing remote sessions. 

So I made her sharpie-notepad-Back-to-School sign.  

As I was writing Fifth Grade - insert "Beethoven Symphony No. 5" here -  it hit me hard that she is actually in fifth grade. 

I fell into the string of where-she-should-be-right-now thoughts. 

Fifth grade would be her last year of elementary school if she were at a regular elementary school. She should be at Guggenheim Elementary, the same school Tanner and I both went! Weird, I know. That's what happens when you move back to your home town. She would be with the big kids on the playground. Kindergarteners would look like babies to her. This would be her last year before going to Middle School. We would have a big project or report to work on together.  I'd be signing field trip consents. 

What else would she be doing in fifth grade? 

Maybe flirting with boys. Maybe not yet! Slow down sister. What would her activities be? Ballet? Hop hop dance? I'm pretty sure I'd push that. Would she sing? Would she be in plays? I should be carpooling more. I should have loud silly girls at my house playing dress up.

My dream is to watch Josie have a meltdown over her clothes, pulling out leggings from her drawer and yelling at me that she needs new clothes! Something like that. Or watching her put on a dress and tights. Or watching her do her own hair. I have these vivid images of this most beautiful girl, that she is, with her soft brown hair and those big eyes, dancing around her room, laughing. 

But FOXG1 Reality Bites.

Right now as I'm writing this I hear her in the other room where our nanny, Janice, is assisting her Zoom PT session. This is usually when I leave my desk and pop into the session. I hear the cheering. Josie is lifting her head up nicely. She's sitting up all by herself "like a big big girl" for a few seconds. A few seconds. 


She's still not sitting by herself. 

She's still not pushing herself up. 

She's far from standing or walking.  

The therapies help keep her active. We will never stop trying. She's still physically at the level of a 6 month old. 




She's in fifth grade and physically at the level of a 6 month old.  

It's hard for me to say where her cognitive level is. If tested, it's probably the level of a one year old, but in my heart's test I know she is right on time. I believe she knows what's going on. I believe she is in there, but because of this dang FOXG1 mutation, her brain just can't tell her body what to do. 

So this is where we are. I'm sitting at my desk, taking a break from running the FOXG1 Research Foundation, to write this blog post. I plug away day and night towards this mission to find a cure, therapies, medications, gene editing, some thing that can help Josie's brain tell her body what to do.  

Hopefully the next post will show Josie back in her classroom with her friends. 

The Music Inspiration

It probably needs no explanation. We all know Ludwig van Beethoven's "Symphony No. 5," but "A Fifth of Beethoven" is something else. It's a disco instrumental originally recorded in the 70s by Walter Murphy and was in Saturday Night Fever.  It's come back into my life thanks to my new favorite jamband - with some serious indie flare - Goose.  

Goose was the band that kept live music (more than) alive during the pandemic. While most bands abruptly halted their live performances, Goose found a way to bring it to the next level - at drive ins and socially distanced outdoor venues. Their stock went soaring and they went from playing small venues like New York City's Mercury Lounge to selling out Mohegan Sun (this coming December). The thrill, the chills, the Goosebumps that cover my skin when they rip into this dance party "A Fifth of Beethoven" is just a small example of why I fell in love with these guys.  It's the escape into sound that helps every facet of my being. 

Oh there's more! The editors of the fan-based newsletter called El Goose Times, invitted me to share my story in their second edition.  Here it is...

FOXG1 in the El Goose Times
Our feature in the El Goose Times


Some more recent photos...

For perspective - can you believe how big Josie girl is now?! 



When Josie actually went back to school this summer


Caught cuddling! Tanner and Josie = my heart is full



Modeling our Cure FOXG1 retro tee's ! 


 


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