I can’t stand the cuteness!! Today was Superhero Day at school and Lily was Wonder Woman (costume courtesy of Uncle Carl and Auntie Alina). She loved her outfit so much she didn’t want to take it off, even for her after school physical therapy session (see bottom right photo of her rocking out on the stairs with her PT).
You wouldn’t believe it by these pictures but she was barely able to walk and was feeling emotional and uncomfortable earlier. She’s been extra lethargic these past few weeks, especially in the mornings. And this morning, the damned rash on her face came back with a vengeance. We have no idea what is causing it and it seems to come and go with no correlation to anything. And it’s super painful and itchy for her. Cortisone, bacitracin, even anti-fungal cream doesn’t do much to alleviate it. So far, what works best is a cold compress.
It seems like every day brings about some new, weird and random Rett symptom. It is a relentless and ruthless disorder. And through it all, my kid handles it with such grace and determination. She’s truly a Wonder Woman.
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!
C & L
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.
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.
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.
C & L
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!
It has been too long since I’ve written. Life has taken over lately and putting my thought to words has taken a bit of a backseat. Mainly it’s because I’m struggling with the reality of Lily getting older (she’ll be eight in February) and of what Rett Syndrome can continue to take away from her. And not having any way to stop this.
Don’t get me wrong, our lives are full of so much beauty and love and laughter. Lily is in ‘good’ health. Stephen and I are also. And we both have great jobs and live in a beautiful home and can afford to live a comfortable life. Lily goes to a nurturing school down the street where she’s got wonderful teachers and therapists. At home she’s got amazing caregivers and therapists. We’ve got a fantastic house cleaner (who Stephen thinks is one of the most important people in my life – he’s probably right!). But there is always this nagging feeling tugging at me. Worrying about Lily and her future and her health.
‘They’ are saying that in 3-5 years there will be a cure. In just a few short months, the first brave Rett girls (and their families) will be participating in the first human gene therapy trial to try to reverse Rett.
Best case scenario is that Lily will be 10 by the time a cure may be available to her. But as every day goes by, and Rett continues to do its horrific thing, what that ‘cure’ can look like becomes less and less optimistic. I try not to think about it too much.
But we just saw the Rett specialist a few weeks back and earlier this week was the Reverse Rett Gala here in NYC. And there’s been some big press about it recently. So it’s top of mind. How could it not be?
I need to find a way to push this all away and focus again on all the good that we have right here and right now.
Wish me luck.
A few random photos from the past few months (from top to bottom): Lily on her first day of 2nd grade, hiking with the mom in the Catskills, Sunday dinner at Grandma’s in Florida, Halloween (Lily is wearing my Halloween costume made by my dad almost 40 years ago, Stephen and I on a weekend getaway, making pesto with Grandma at our new apartment