August | 2016 | blueberriesandgiggles

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.

Summer 2014

Summer 2016

My soul is hurting this week.

I’m still fighting for basic Medicaid services (like diapers, overnight respite, daytime respite) while trying to prepare (and not completely flip out) for Lily starting kindergarten next month.

I’ve had to postpone our move to the Upper West Side which means she will be in for quite a bus ride to and from school. So I need to make sure it’s as comfortable, and as safe, as possible. I’ve already gotten a doctors note requesting what must happen but trying to find the right person within the DOE to make this a reality is proving impossible.

Good news is that I’ve averted the ‘adaptive stroller’ issue for the bus but that was a research project and fight in its own right. And the fight is only half over.

There’s always so much to do. The lists I have written down, and in my head, are endless. So the idea of moving while all this is going on (and I’m not even adding the to-do’s from my job) makes my head reel.

At the top of these lists (other than bussing and Medicaid) is to get her new school up to speed with her abilities, and needs (they’ve never had a Rett sweetie nor do they have experience with the Tobii), get Lily acclimated to a new school with new kids and new teachers, find a few new home-based therapists to replace those that fall off after pre-k (hint: this is not easy), and remind myself that it is all going to work out. Deep breaths.

I wish I could say that Lily’s sleep has stabilized but that would be a lie. And the panic attacks, though less frequent for now, are still happening.

The upside? Lily is keeping me laughing with her silly antics. Yesterday she kept pulling down her Peppa Pig artwork from the wall. Shamekia the nanny initially thought it was an accident so kept pinning it back up. But after the third time she found it on the floor, she asked Lily ‘you don’t like Peppa Pig today?’ And Lily scrunched up her face in a recognizable look of disgust, which means ‘no.’ And then she giggled about it.

Why my child doesn’t like Peppa Pig all of a sudden is still unknown to us. But I love that she is always finding new ways to let us know what she likes, and doesn’t like.

If we (meaning me, Shamekia and/or her therapists) figure out why Peppa has turned into persona non grata, I will let you know. But for now, I will leave you with a visual of my kid admiring her art wall sans Peppa from earlier today.

Peppa pig in the doghouse.jpg