Tag Archives: summer vacation

Swimming like a mermaid

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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!

Love,

C & L

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Today

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It’s 5:30pm on the 24th of January. And it just hit me. Today marks 5 years since d-day–Lily’s Rett diagnosis day.

What a 5 years it’s been. What a roller-coaster. But I wouldn’t give it up for anything. I’ve got the sweetest, coolest almost 8 year old I know. She is my joy, my inspiration.

Don’t get me wrong, it’s not easy. Every day I say to her when she’s having a tough moment–like trying to walk in the morning or crying uncontrollably in the middle of the night–that I can’t fix things. But that I can make them better. With love and comfort and compassion. But I can’t fix it. I can’t fix it.

That sucks. No one should ever have to see their child suffer so much. Every day. Every day. I’ll say it again: every day.

And we are so fortunate right now as Lily is going through a relatively stable period. And the ‘relatively’ is truly that. I am not trying to sugarcoat any of it: our ‘normal’ is anything but that.

So it’s been 5 years. And we’re getting closer to the ‘cure’ but it’s still not here. And every day as Lily grows and Rett continues to ravage her body, that ‘cure’ looks less and less like a cure for her. At this point I’ll take whatever it is we can get. Just to let her have the ability to breathe with ease, to wake up and not be in pain… I’ll take it.

I can’t believe she’s going to be 8 in a few weeks. I can’t believe how much she’s grown and changed. I can’t believe how much I’ve transformed because of her. And for that, I am grateful.

In so many ways, she’s such a ‘normal’ kid. She’s been putting together weekly hair menus letting me know how she wants her hair done every day. How freaking cute is that? Currently she’s all about pigtails. As you can see from the menu and hairstyle:

Her birthday is on the 8th of February. And I wish I could give you a list of things she wants as presents. But I don’t have one because she cannot tell me outright. So if you want to do something for her, consider making a donation to Rett Syndrome research. Not only will it go to her future, but the future of all her other Rett sisters and brothers.

With love,

C & L

Let the holidays begin!

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Lily goes to a 12 month program which is super important for girls with Rett – consistent therapy (physical, occupational and speech) helps Lily maintain her skills, and learn new ones.  Yesterday was her last day of summer school and tomorrow begins her whirlwind travels.

I was initially overwhelmed about trying to plan out Lily’s four week hiatus – will she be well enough to travel?  Will I be strong enough (emotionally and physically) to handle traveling with her (even if she is well enough)???  Where will we go and what will we do?

There were so many questions and concerns ravaging my brain.  I was frozen.  I couldn’t make any decisions.  And as many of you know, this is not characteristic of me.  I’m (very) action-oriented.  According to Stephen, I’m hyper-productive.  I never stop strategizing and planning and executing on plans.

But first, I had to make peace with a few things before I could even begin mapping out our plans.  The main issue was this: if I wanted to truly enjoy my vacation with Lily, I needed to bring a caregiver along.  Could I take care of Lily on my own?  Sure.  Would I be completely exhausted and malnourished in the process?  Yes.

Needing help was feeling like defeat to me.  Especially when it comes to caring for my own kid.  I’m not going to say I’m entirely over that feeling of defeat BUT I can now look at the upcoming few weeks with the knowledge that both Lily and I will have a fun, safe and restful time.

 

 

Scenes from a beach vacation

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Holy cow have we been having fun! From the Cape to Shelter Island, Lily and I have been surrounded by laughter and love – from old friends to new.

Here are a few photos which capture some of our adventures. If you want to see more, let me know. As usual, I took too many pictures of this sweet kiddo.

Our first full day in the Cape (with the Bernsteins!) was your typical romantic New England weather: chilly and gray! We spent the day reading books at the beach house and in the library. Hint: the Wellfleet library has an amazing kids section that rivals the old FAO Schwartz on 5th Ave – complete with costumes and stuffed animals.

We also had a lot of fun using the Snapchat filters once all the books were read.

The next day, the clouds parted and we went to the beach. While we didn’t find any mermaids, we did see some seals!

And the following day was more of the same: perfect company, perfect weather and perfect waves! The ocean was too cold for Lily to go in and it was almost too cold for me. But I braved it and jumped in.

The next day, we embarked on the second part of our beach vacation: Shelter Island!! Lily and I had the most fun time riding the Cross Island Ferry on our journey. I think we ran around that big boat at least 3 times. And of course, Lily made a bunch of new friends on the ferry.

We spent a week in total at Shelter (thanks to the Nelsons!!!). The weather was beautiful and the beaches were lovely.

Our first day out there we met up with the Rogers family in New Suffolk to watch the boat races, which has become an annual tradition. This year we had the addition of Elaine, Lily’s SLP and our family friend.

Lily and I took a much needed break from the sun on Friday and met up with Stephen (who came out for the weekend) to ride the carousel in Greenport. We also had the opportunity to see our friends Maren and Ben DeSantis too.

On Saturday and Sunday we hit the beach with the Nelson-Dollar clan. We spent both days searching for mermaids but only found mermaid toenails (i.e. magical looking shells that come in all colors of the rainbow).

And on Monday, Lily and I watched the eclipse, borrowing eclipse sunglasses from our newfound friends. I’m telling you – this kid is super social.

Lily is now on the second part of her vacation – the Poconos with her dad. I’m also on the second part of my time-off – the Sivananda yoga ranch upstate. I’m going to miss my sweetie so much but I’m looking forward to getting some down-time. I’ve got some big decisions to make about Lily and need to process it. Though we had a great trip, her appetite was a big struggle. And even when she was hungry and wanting to eat, it would take upwards of an hour for her to have a meal. It’s not been heartening. But I’m grateful to have had the time to get to learn as much as I can about my kids struggles, and her abilities.

Om Namah Sivaya.

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