Thursday, September 11, 2014

Our little messenger


It's been a good and busy month! An EEG, first week of school, a family vacation and then back to school.  Lucia's 24 hour EEG results continued to show abnormal activity (which was expected for her development) but NO seizures were seen.  So happy. Yay bird!  So very grateful seizures have not become a part of her daily or weekly struggles.   Next on the agenda....our little bird has taken flight for school!
As I was preparing the week before for Lucia to go, mostly just mentally, someone asked me if I had gotten her a backpack.  I had not nor had I even thought of that-doh!  Excitedly, I started looking online with Lu by my side- I googled "bird backpacks, girl backpacks, flower backpacks, monogrammed" and more and there were endless options to choose from-but none that seemed quite right.  Then I came across a page with all different types of packs and I saw it...messenger bags.  It was moment like you're listening to a fun song and someone suddenly stops the music, they scratched the record.  I pictured a little girl walking to school, maybe skipping, with her school backpack on her back.  But that is not our Lu and I don't know if it ever will be.  A backpack was not the right purchase, a messenger bag was.  A fold over, one strap bag that would fit the best on the back of her adapted stroller.  Our sweet sweet bird.  Oh I love her so.  I texted my mom (as she had eagerly offered to help with the backpack search) saying how she needed a messenger bag not a backpack.  My mom quickly came back with a "she will be a wonderful messenger".  Duh!! -That was it!  Our Lucia has taught us to not take anything for granted, celebrate small and big achievements, slow down and enjoy the love and company of each other and soooo much more... And she has no doubt made us better people.  She is here to deliver her wonderful message. She IS a messenger and she will have a messenger bag!  Perfection.  So proud of my little girl. Thanks mom!  So two weeks ago off she went to her first day of preschool or ECE.  I arranged a sitter for Scout and stayed with Lu the first day to orient the teachers and assistants.  Right now she has a small class of just 4 other students.  5 little 3 year old students- so cute.  I really like the staff from Mr. Gerri the teacher to the assistants/para's Ms Nella and Mrs Bobbi to the admin and principle Dr B.  
how cute are these kids?! 

The RED CARPET!  
Taking an idea from another mom with a special needs son, Benjamin Roberts, I made a book for Lucia, one to keep at school. The staff say it's been helpful and I feel better knowing it is there as a reference if anyone needs it.   She can't share her likes, dislikes, talents, goals, and history so I wanted to help her do that. I'm her voice.  Here's your book Lu..








Thanks Amber Babb for passing along a template for this.  Amber's little girl Lillie is Lu's age and also has PKS, I even kept some of the wording as our girls are so similar!
So our messenger had a pretty good first week of school.  I ended up going in a couple more days to meet therapists and make sure everyone felt comfortable working with her..  We also had to incorporate some daily floor time as Lu was SO tired the second day she gave me a scare!   When I went to pick her up she was sitting in her seat fully asleep, unable to awake, and was a bit pale.  I think it was just all too much excitement and 'up' time.  I know Lu likes being around her classmates and exploring a new environment but I would be lying to say it doesn't really scare me.
Meanwhile, I'm going to line up some one on one activities for me and the little busy body, funny and usually sweet soldier Scout while Lu is in school.
such a "helper"?! 

Sceets!

pilates?! no just one of lu's special seats 

Our Sceets is getting more personality every day..I would be lying to say that doesn't scare me too!  I guess being scared is just part of being a parent.
Thank you Mario and Linda for a WONDERFUL family vacation to Maui this past week.  Lu had a week of school, then off to paradise for a week and now back to school- not bad for the Lady of Leisure!  The trip could not have been better.



Praying for many of Lucia's friends that are sick in the hospital right now, and praying to God for peace around the world.  One last thought, what is your message in this life?