Tag Archives: Rett Syndrome

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!

Outrun Rett

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One of my Rett momma friends is organizing a charity run this coming weekend that Lily and I will be participating in.  I’ve been so busy that the event has just crept up upon me and I’ve had no time to help promote, or to fundraise.  Until now!

For those of you in the New York area, consider joining us.  For those of you afar, consider donating.  All proceeds go to Rett Syndrome Research Trust.  And every single dollar raised moves us closer (and faster) to a cure.

Lily and I will be run/walking this 5k, and I’ll have the stroller as a back-up.   I dream of the day that we will be able to go for runs and hikes without any equipment needed.

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The Beauty of Technology

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A friend posted the below link on his Facebook page yesterday.  I began to open the link knowing that I was opening myself up to an avalanche of self-pity and ‘what-if’s’. So I closed it down.  But the title of the article, well, it stayed with me.  I woke up this morning and had to add my take to his somewhat smug post (which, by the way, I totally get and likely would have posted similarly had I not found myself in my unique parenting situation).

Here is the link: ‘Stunning photo series shows what it’s like to grow up without technology’.  

Here’s my comment:

Just reading the title of this article fills me with a level of jealousy I never knew existed. I have two iPhones, two IPads, a tablet and a $20,000 eye gaze device that I rely on to not only speak to, but also educate and comfort my child with Rett Syndrome. And because of this technology, my 5 year old nonverbal child told me (through technology) last night that she wanted a jacket because she was cold. I don’t think anyone could truly understand how amazing that moment was – to hear her express her basic needs – unless they have to live through it. Not all technology is bad and not everyone can follow the ‘ideal life’.

I dream of the day when Rett Syndrome will no longer be our reality.

 

Lily, Lily legs

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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!