Outrun Rett

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.




The Beauty of Technology

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.


Ladies who lunch

I am so proud of this kid!! She had a  dentist appointment today and was so brave. So I’m taking her out to lunch to celebrate her bravery. And my relief that she doesn’t have cavities (which is what the dentist who visited her at the school told me). When in doubt, always get a second opinion.


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?!


Those piggies are flat on the ground!



She’s yelling when she’s happy, when she’s sad, when she’s anxious, when she’s bored. Basically all the time. For the past month. And I thought teeth grinding was annoying. Ha!

One of her therapists thinks that it’s just another manifestation of her breathing issues. She’s not been hyperventilating or breath holding as much lately. (Yelling, teeth grinding and breath-holding are all unfortunately typical symptoms of Rett, among many others). I know of one Rett mama who got herself noise canceling headphones because her daughter wouldn’t stop screaming. I’m considering getting a pair.

It’s a good thing she’s so stinking cute!