Lily’s favorite things

Two years ago, right before Lily was starting preschool and I was in the height of mommy flip-out mode, I wrote a 5 page document about Lily’s favorite things which I gave to all of her teachers and therapists.

Two years on, I find myself in the same place.  Freaking out about her going to a new school – new teachers, new therapists, new friends, a new routine.  And so I revisited the ‘Lily’s favorite things’ list to update it for kindergarten.

I’m not going to lie.  A lot of it was heartbreaking.  I had to remove all of the things Lily was able to do at 3, but can no longer do at 5, like:

  • Shooting hoops: Lily can pick up tiny basketballs and puts them in the basket. She even independently bends down to pick up the ball from the ground so she can put it back in the basket.
  • Turning the pages of the books we are reading. And we often prompt her to use her pointer finger to point to an item on the page (dog, moon, bird, etc..). If you start by asking her ‘are you ready?’, she will most likely reply, ‘I’m ready!’…
  • Approximating the word ‘omelet’
  • Approximating the word ‘berry’

I try not to get mired in the depression of the regressions.  It’s not easy.  But I will continue to be proud of all the other things she can do, like:

  • Dancing: in preschool, she was known as the disco diva as she would always try to start a dance party during class-time.
  • Running: Lily has really gotten into walking fast (almost running) when outside and she gets a huge grin on her face once she gets booking.
  • Walking up steps: she has a lot of determination and likes to challenge herself. Sometimes she will need an extra hand to step up but she’s getting to the point where she can independently walk up a few steps without assistance.
  • Hiking/climbing hills: maybe it’s because she loves the ‘Elmo climbs Mount Biggest Everest’ episode so much, but this kid loves hiking up hills.
  • Climbing on furniture: just the other day, I turned around and ‘poof!’, this kid had figured out how to pull herself up to stand.  On my sofa.

I’m going to work with her new therapists to try to get her back to being able to shoot hoops, turn pages and talk, and more!  We will get there.

But wow, what a difference two years make!  She’s grown into such a sweet kid, who’s almost 4 feet tall.

The true star at the ballet

 

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A few months back, Lily and I were invited by her dad’s family to see a special ballet performance geared towards children with disabilities up in Connecticut.  Lily had a ball.  And as you will see (and hear – yup, that’s her yelping THROUGHOUT the clip), this kid had a GREAT time.

(Hopefully you can view the video.  For some reason, some browsers only show a picture, and not a link to the video.  Ping me if you can’t access it.)

 

A day in the life…

The ever talented Suzanne Fiore came over the other week and beautifully captured a Saturday afternoon of Lily time.

Click here to see more of the beautiful photos Suzanne took and read about a day in the life with Lily.  And please feel free to share with your own social networks.  #CureRett.

 

A different kind of learning

Lily continues to impress both her home-based and school-based teachers and therapists (all 15 of them). This kid is super smart and silly, and most days she’s doing amazing things with communicating on the Tobii. Just the other day she had a conversation with her home teacher Denise to tell her that she was ‘angry’ and ‘greedy’ at school because she couldn’t play with the computer when she wanted to. And Denise explained that Lily can’t always get what she wants when she wants.

Oh, the perils of being an only child, raised in a single-parent home and having special needs on top of it. Creating boundaries and holding to them, reminding her that yelling is not nice, that sharing is important; I’m doing the best I can. But sometimes I’m not sure it’s enough.

She continues to be (mostly) sweet and loving and loud. I’m pretty sure that most parents of 5 year olds question their parenting skills and are driven mad by the noise and the insubordination. This brings me a strange sort of comfort. Makes me feel almost ‘normal’.

But I digress. Learning. It’s different for girls with Rett Syndrome. Some days this kid is on fire – engaged, communicative and creative. But there are those other days, the days when she didn’t get enough sleep or something else Rett related is going on, that she really struggles. I’m grateful that she, and I, have such a great support system who understands her ups and downs and are so creative in their approach.

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Admiring her artwork – and her favorite ‘literary’ characters

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Snapshot of her play/therapy room (PS someone got her first big-girl tooth!)