The best summer ever!

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Maybe it was because Lily slept so well every night, maybe it was because we spent a lot of time at the beach and the pool, and maybe the two are related.  Who knows?  All I know is that this kid (and this momma) had FUN.

We kicked it off with a trip to the north fork in Long Island to visit Lily’s Rett sister Maren and her twin Ben (and their mom Lena!).  We hung out on the beach, watched the sailboat races and witnessed Lily’s advanced flirting skills.  She took quite a liking to Ben and they took turns chasing each other up and down the beach.  It was as adorable as it sounds.

Next up was a family reunion in Boston Corners with Auntie Angela and co. It was a great trip – the weather was nice and cool and the company was fantastic.  Lily loved spending time with her family and going for nature walks.   We even went for a bike ride (she barely fit into the kiddie seat in the back)!

A few weeks later, Teetee Angela and her big belly came up to visit us! We went swimming, read books at the library and ate at some super cool restaurants.

We then had a flyby visit from our cousins Laurene and Steve who live in Indiana and that was super fun for the mommy.

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Lily then went off and spent a week with her dad up in Connecticut.  She LOVES the water (and dressing up like a fairy).  I’m pretty sure she thinks she’s a mix between a mermaid and a fairy.  You should see this kid in the water!

 

A few weeks later we were both up in Connecticut as Lily was a flower girl at her Aunt Kathleen’s wedding.  This kid looked so pretty and she loved wearing her flower girl dress.  She and I had a lot of fun playing around at the farm where the wedding pictures were being taken.

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Next up was another visit to the north fork where not only did we catch up with her Rett sister Maren, but her other Rett sister Ella (in purple below right – it was impossible to get these two girls together for a photo!).  This day (for both Lily and mommy) was probably one of the very best days we had all summer.  Lily was reunited with Ben and mommy got to spend time with adults who are also raising girls with Rett Syndrome (and happen to be absolutely awesome people).

And I’m not even done yet… so many more amazing things happened this summer.  Uncle Viraj came in for a quick visit, Lily spent another week with her dad at a water park, she and I spent a few days with our friends Bonnie, Stefanie and their beautiful family on Shelter Island and then we caught a plane to Florida to spend time with our family down there.  Lily sure loves her Grandma and cousins.

Holy cow, no wonder I’m so exhausted.  We were busy girls this summer and we were both so very loved everywhere we went.   I’m feeling really grateful that we were able to make such beautiful memories with the most amazing people.

Love to you all.

C and L

 

 

 

 

Lily’s favorite things

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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

The to-do lists are endless

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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. 

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A visit to the library, with Teetee!

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I didn’t mean to keep you all hanging from my last entry. I did take Lily to the library as she requested. But we had an extra special guest with us – Teetee Angela from Florida!!!

Initially Lily was enthralled with the library. We read a few books, tried to find a few new ones (Teetee and I thought the book Chicken Cheeks was hilarious; Lily was ambivalent) and flirted with the idea of taking her to the ‘get ready for kindergarten’ program that was serendipitously starting while we were there. However, at that point she had enough and we left.

We had such a great weekend with Teetee.  Not only did we go to the library, but we went to Brooklyn Crab for lunch and went swimming at a friend’s pool where Lily had the time of her life.  We were so sad when it came time for Teets to head back to Florida.  Good thing we get to see her again in a few weeks!!

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Don’t go Teetee Angela!