Author Archives: mommabear0208

Trials and Tribulations

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There is so much promising research happening with Rett Syndrome right now. For this momma, it’s overwhelming to digest. There are currently 3 clinical trials that Lily is eligible to participate in and all three offer the potential to help with some of her symptoms.

Clinical trials are no joke. We participated in one a few years back and it’s a lot of work. Lots of hospital visits and monitoring. And a new medication to remember to give her every day.

I’ve done a lot of poking around, reading medical papers, have consulted with two Rett specialists, a bunch of Rett mommas and have decided that Lily will be only participating in one trial. It should be starting in late fall and I’ll be sure to send updates.

In the meantime, we’ll just be enjoying life in our little oasis on the UWS, trying to get this kiddo to gain some weight. Come and visit if you’re in town!

Love,

C & L

Aloha!!

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Lily’s 8th birthday was such a success. In the lead up to her birthday (and the subsequent week), she was ecstatic. Birthday parties, Valentines Day and Hawaii? All in one month? It was almost too much.

But not really – seeing her so happy and (mostly) healthy – especially at this time of year – is such a relief.

We are day 3 into our Hawaiian adventure and this kid hasn’t stopped beaming. Thank you Make-a-Wish! Here are a few shots… leaving for Honolulu at JFK, getting a tour of the cockpit with the captain of the plane at landing, riding a limo (with Urszula), relaxing at the pool/beach and partying it up at a luau! More photos to come.

Lily’s luau birthday bash

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This kid turned 8 today. Can’t begin to explain how proud I am to be her mom. In anticipation of her upcoming Make-A-Wish trip to Hawaii, we celebrated with a luau!

The party was a success. It started with a ballet class taught by New York City Ballet (check out Lily independently getting her feet into 5th position in the second set of photos) and then the luau at school with pizza, cupcakes, giggles and dancing. Lots of dancing!!! After school we had a play date with her friend Xan, followed by dinner at her favorite restaurant. And then we went home, exhausted, full and happy.

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

Resolutions

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I’m not generally a resolutions type gal, I prefer to use the word ‘guidelines’ when plotting out the year ahead.  For example, some of my guidelines for this year are to practice gratitude more often, learn how to do a handstand and get more sleep.

My child, on the other hand, has created a robust list of resolutions that are truly inspiring.  She’s such a funny, smart, silly kid.  And I hope that 2019 continues to be a great year for her.  And for you all.

Happy New Year!