This kid turned 8 today. Can’t begin to explain how proud I am to be her mom. We had Lily’s luau birthday bash took at school this afternoon in anticipation of her upcoming Make-A-Wish trip to Hawaii!
Her 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) and then the luau with pizza, cupcakes, giggles and dancing. Lots of dancing!!! After school we had a play date with her friend Xan. And then we had dinner at Playa Betty – her favorite restaurant. Afterwards we walked/ran home with excitement to have some more singing of ‘happy birthday’ and blowing out candles.
In lieu of presents we are asking for donations to the Rett Syndrome Research Trust if you so wish: https://rettgive.org/projects/a-cure-for-lily/
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!
Even though our mornings start with me saying “Lily – breathe” “Scoot forward angel face” “Stand up – you can do it!” “Keep your feet under you baby girl” “Walk forward” “Lily relax your muscles” “Lily open your mouth sweetie” “Swallow your food honey” “Lily you need to eat something before going to school”, they are also filled with so much love and many giggles.
Her struggles continue. Some of her symptoms are getting worse. Some are easing up. But she still manages to put a smile on her face and bravely move forward with her day. I do my best to follow suit.
I’m grateful that this girl continues to persevere in the face of so much adversity. A lesser person would crumble. I’ve crumbled. But I dust myself off and remember that Lily needs me. I do not have the luxury of losing my shit completely. Though I do lose it momentarily, and preferably when she’s not around.
I am her voice (though she’s getting quite fluent with the Tobii), I am her arms, sometimes her legs, oftentimes her nurse, her doctor and always her advocate. Oh yes, and I’m her mommy. So we do our best to have as much fun as possible in between (and sometimes during) all those doctors and hospital appointments.
It’s the season of giving. And my ask to you is this: if you are considering making a charitable donation in the coming weeks, please consider giving to the Rett Syndrome Research Trust. We are SO very close to a cure; every dollar raised inches us to our goal. And all of our Rett sweeties and their families could use a miracle right about now.
C & L
My heart is bursting with pride. Sharing a note Lily’s teacher wrote today along with some pictures…
This kiddo had an amazing day! She’s been very interested in notes and letters (wanting to keep re-reading the notes you send in her lunchbox, very proud of the card she wrote for Christine’s birthday, etc). So yesterday and today we started talking more about letters. We talked about parts of a letter (greeting, body, closing) and Lily helped me sequence a letter that I wrote to Ms. Ariel. She was very into the activity (wanted it to be a secret and a surprise, and asked for “more” when the activity was complete). Then, she worked on her own letter. Christine, we sent it home in her backpack. We were blown away… she wrote it almost completely by herself, with nothing but some verbal prompts (e.g. “don’t forget, a greeting is like a hello…”). She chose who the letter was for, what she wanted to say, and how she wanted to close out the letter. It was really great practice (writing work and using the Tobii), so I’m sure you’ll be seeing more letters in the upcoming weeks.
Today we also read a few more chapters of Junie B Jones and she was laughing hysterically at the silly parts. In one of the chapters, Junie is sharpening pencils (and attempts to sharpen a crayon in a pencil sharpener, which doesn’t go so well). Lily requested, “my turn,” so I took her to the office to sharpen a pencil. She seemed to think it was great fun! She once again did a fabulous job asking comprehension questions during the read aloud, and seemed very engaged. Once again, she was a total cuddle bunny today. At the end of the day, she kept going back and forth between me and Ariel, squealing, and leaning in for hugs. She also put her arm around each of us at least once, which was so exciting! She was very, very happy this afternoon.
See you soon,
P.S. Lily and I had matching shirts on today, which she seemed to think was pretty funny!
What a day we had today! It started at Central Park where we were meeting my grad school friends to celebrate our 15 year SAIS Bologna anniversary (for those of us who live in NYC and who couldn’t make it to Bologna). It was a hot and muggy morning. But Lily and I had a great time catching up with old friends.
We spent hours in the park – eating, dancing, singing, crashing other people’s parties and listening to live jazz. On the way home I took Lily for a late lunch to Playa Betty’s (her favorite restaurant on the UWS) and then we walked over to Riverside park. You see, we were on a quest to feed the birds. This is something she requested to do earlier in the week. Alas, no birds were to be found. But we will try again tomorrow. I hear we may have another day of summer weather.
In my quest to find an answer for whether or not to do the neuropsych, I came across this recent article. Here is a relevant excerpt:
It is extremely difficult to evaluate the cognitive abilities of individuals with RTT as these are masked by their motor, apractic and atactic difficulties, which limit normative evaluation. On the other hand, many research projects have suggested that individuals with RTT are able to learn [18-21], and that the learning skills can be enhanced with appropriate motivational factors  as well as that learning is sustained after a ‘washout’ period of the learning program has ended . It is also clear today that individuals with RTT can learn new skills [22,23], including literacy [20,21,24], and that learning ability is sustained in individuals with RTT at all ages.
The article is insightful in many levels and the premise is basically that girls and women with Rett Syndrome need intensive and constant therapy/intervention throughout their lifetime to maximize their quality of life.
I’ve seen the positive effects of intensive intervention firsthand. And there is now some data to demonstrate that Lily is progressing both motorically and cognitively. For example, her first progress report for the year has come in and it is the FIRST TIME that the teacher at school has indicated that Lily has made significant progress in a few areas. It is most definitely because she has a Tobii at school now, and that her teachers and therapists are committed to engaging with her through it.