Lily needs time to be Lily

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Almost daily, that phrase pops into my head – Lily needs time to be Lily. Her very first ABA therapist, Ann, said this when Lily was only 18 months old and it struck me – even then. This kid spends most of her days working – trying to do things that you and I take for granted. Like picking up a fork and putting it to your mouth, walking a straight line, talking. And you know what? Sometimes all the work has to just stop. Lily needs time to do the things she wants. So every day, I try to give her that opportunity. This evening, I took her out to dinner to celebrate the end of a busy week. She chose the restaurant. And then afterwards, she chose where we walked and what we did. Tonight we crashed a jazz concert. Who knew this kid liked jazz??? She won the hearts of everyone in the crowd, including the musicians. She has a way with people. So what else does this kid like to do?

  • Making friends with fellow diners, and trying to get some of their food
  • Cuddling up to cute guys with iPads
  • Running down the street while listening to her favorite tunes
  • Practicing stair-climbing
  • Admiring every shiny car wheel she sees
  • Looking at flowers in bloom
  • Sometimes wanting to hold my hand
  • Sometimes giving me cuddles and kisses
  • Giggling
  • Yelling
  • Tummy patting
  • Wading through puddles
  • Looking up at the trees
  • Smiling
  • Dancing

Watching her – completely content in activities of her choosing – makes me so very happy. Sometimes I feel like the luckiest mommy in the world.

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Earlier today, excited about the school dance she was about to attend!

Lily, Lily legs

The other day I posted the below message in Facebook. I thought it went up on the ‘My daughter has Rett Syndrome’ family group. But it was posted to the greater FB community as well. And I’m grateful for my error. I got so many fantastic recommendations from both groups. Now to choose which chair support to buy….

Here is the post:

So Lily is getting REALLY long. Which is not surprising as I’m 5’11” and her dad is 6’5″. But it’s starting to cause an issue for when we go out to dinner. Or go grocery shopping. Those Caroline’s carts have not made their way to Whole Foods in NYC (or any other grocery store for that matter). And when eating out, she can still fit in a highchair (she’s skinny) but she’s literally got both feet on the ground! If I don’t have her in the highchair, she will roam the restaurant looking for cute boys to steal food from. What do you do when you take your girls out to eat, who are roamers, and don’t fit into highchairs anymore?!

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Those piggies are flat on the ground!

 

Happy Spring

Strolling in the springtime

Strolling in the springtime

Lily and I are so excited that the flowers are starting to bloom!  It fills us both with so much excitement and hope.

Here are a few Rett related things that have also been inspirational to me over the past few months that I wanted to share:

  •  Moving video about living with a child with Rett Syndrome
  • The Today Show piece on Rett Syndrome
  • The scientist who discovered the genetic marker for Rett Syndrome is coming to NYC (and I’m already signed up to see her speak)
  • An upcoming Rett fundraiser in NYC where I’ll get a chance to catch up with some of my awesome Rett momma friends (and for those of you in the NY area – would love for you to join me!)
  • An announcement from RSRT about the $9mm that was awarded last year to research (psst some Rett momma friends and I are getting together to brainstorm on how we can double that number for 2016)

I hope to see some of you at the fundraising event next month!

Love,

C and L

5 years old!!

imageLily is so excited about her birthday. We had nice, small celebrations with some family over the weekend. They spoiled the both of us. Today  I’m heading to school for a pizza party with her classmates. So! Much! Fun!

It’s going to be quite the week for us girls. Party at school today then I have to rush to midtown to do a presentation for an important constituent group. Tomorrow night I’m going to a talk on the kindergarten process. Wednesday I’m taking Lily to the endocrinologist (the latest specialist we need to see). Then Thursday is the meeting with the DOE to talk about kindergarten placement. Somehow I will manage to squeeze in a full work week on top of this.

Lots going on. Most of it good. All of it for my sweet Lily. Who is now 5! No way Josè!