Swimming like a mermaid

This week we’ve been down in South Florida visiting family and friends. We’ve been able to accomplish so much in such little time… like mommy getting to see not one, but THREE of her high school friends. And of course spending as much time with our family as we can. And swimming. And eating. And having dance parties. And swimming some more.

The weather has mostly been sweltering. But it hasn’t stopped this kid from picking up new skills in the water. She is doing all sorts of amazing things independently in the pool. And the ocean (with the courtesy of her swimmies). Here are a few shots from our visit.

Happy summer!


C & L


As time goes by

Lily and I just got back from a week in Florida visiting our family. It was a good trip. But a tough one. It’s not as easy to travel with her now. She’s bigger. Her symptoms have evolved. And caring for her has gotten more complex.

I’m exhausted. Lily is too. But damned if we’re going to let Rett Syndrome keep us away from our family.

Here are a few photos of our vacation. There were a lot of smiles. But there were definitely a lot of tears and frustration and really hard days and very scary moments too. They just don’t make for good pictures. So I’m only going to share the happy ones.

I’m also going to share an article from another special needs mom who writes about the isolation and exhaustion that comes with being on this path. Thank you Amy from Raising the Extraordinary for so beautifully and eloquently explaining what this journey is like for us moms.

And thank you Florida family for loving and supporting me and my girl so very much.

Scenes from a snow day

As you know, the east coast was hit with quite the storm. Lily and I hunkered down and did our best to enjoy her day off from school.

We played dress-up, read books, watched movies and even went outside for a nanosecond. She doesn’t like the cold or the snow. She too must be a Floridian at heart like her momma.

Winters are not easy for Rett girls. Not only is it more isolating than usual, but also they struggle more with their health. Peeing, sleeping, breathing and eating have become concerns again in this house. For the most part, she’s staying positive. But she’s had more than a few moments of feeling miserable and sad. I’ve seen many more tears than usual these past few weeks.

We are both trying to keep our spirits up. It’s not so difficult to do as we are heading to Florida to visit our family next week. We are both excited to feel sun on our skin and sand under our feet. And of course see our relatives!!!

Stay warm.

The best summer ever!

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.


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.


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