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!!!
Yeah… we bad. We bad.
Actually, we bored!
Lily is ready to get back to school. She’s been sobbing intermittently for the past few days. Likely because she’s been cooped up and is missing her friends. Or maybe today it’s because she’s not peed in over 18 hours. There’s a lot of calculated guessing when it comes to figuring out what’s going on with her.
Anyway, it was pretty apparent when she came home to me yesterday evening that she wanted to go outside.
This is how she tells me she wants to go out… she stares at the doorknob wishing it to open
But as it’s currently hovering around 15 degrees Fahrenheit and she has zero body fat, there was no chance that we were going to venture out in the dark last night.
So today I planned a day of activity and fun! The American Museum of Natural History followed by lunch at her favorite restaurant Playa Betty’s.
Our first 20 or so minutes at the museum were tense. She was not pleased. But we finally made our way to the Native American section which she loves; she eventually perked up – her favorite music, Snapchat filters and bead displays helped. Lily spent about an hour roaming about looking at furs and feathers while I played bodyguard, blocking her from other museum patrons.
So the museum was mostly good, though exhausting as I had to carry her for much of it. And the other half was spent chasing after her.
Next on our agenda – lunch! The restaurant was 4 short blocks from the museum so I decided that we should walk. I mean… she was busting to get outside last night, right? Well it turns out that Lily likes the cold and snow even less than me. After about a half a block of walking/carrying, she burst into tears. Thankfully a taxi driver took pity on us and took us three(!) blocks to our restaurant. He was very kind and laughed along with me at my kids over-reaction to the snow.
Thankfully she ate her lunch – in between sobs – and I got mine packed to go. We braved the short block and a half to our home – amidst the sobs – and now we are home. And it’s only 2pm. And she’s still not peed.
Wish us luck.
This is what she currently thinks of winter break.
Lily was so excited about Christmas Eve that I couldn’t keep her still for a photo. She was literally squealing with joy. I was pretty excited too as we got to spend it with the Darlings, our beloved cousins.
I had forgotten how fast Lily can be. It’s been so long since I’ve seen her move like this. And she’s gotten taller. So it now takes about two steps for her to dart out of a room and down the hall. I got a lot of exercise chasing after her that night. And I was so grateful. Watching her run around giggling felt like a Christmas miracle given how she was doing last year at this time.
She was adamant about having her hair up in a bun with a silver hair tie.
Christmas Day she was feeling a little hungover from the previous evenings excitement. So we took it easy. Opened presents. Ate pancakes (courtesy of Stephen). And opened more presents. For lunch we went to Benihana. I think Stephen and I were more excited about it than Lily. We didn’t even realize that there was a Benihana restaurant in Manhattan until we started researching places to eat. Lily enjoyed the flying shrimp and the onion volcano, but not as much as the adults did!
Christmas day: Hibachi fun!
The rest of the day we chilled out at home – playing with our toys, reading our new books, wearing our fabulous new jewelry and feeling very loved.
Wearing her favorite bracelets (courtesy of Auntie Angela) while chatting with Grandma on Christmas Day.
For New Year’s Eve, we will likely have a crazy fun party. In mommy talk this means popping popcorn, watching High School Musical and in bed by 9. A pretty perfect sounding evening for me and my girl.
To everyone who showered my girl with love this holiday season: thank you! Lily felt so very special. And so did I!
C & L
Dreaming of having a pet bird
Yesterday morning while having breakfast, Lily told me that she wanted to look at baby animals – birds, cats, guinea pigs and dogs. So I pulled up some YouTube videos and we had fun watching these furry little creatures move around. She was especially fond of the kittens and birds. She eventually told me that she wants a pet kitten and a pet bird. I wasn’t surprised to hear that she wanted a bird. Last week, she fell asleep in school and was giggling in her sleep. When her teacher asked what it was she was giggling about, she said she was dreaming of having a pet bird!!!
Some of you may remember that we experimented with a pet cat back when we lived in Greenpoint, Brooklyn. Quelle disastre.
This mommy can’t take on any more responsibilities so instead of getting her a pet bird or pet cat, we will be taking her (often) to the pet store to visit her animal friends there.
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
Hello everyone who wants to Reverse Rett,
On Wednesday 10/25 a celebrity campaign launches to invite the world to help Reverse Rett. A long list of stars including Sofia Vergara, Matt Lauer, Sarah Silverman and Nick Offerman participated in a PSA video and many more will be part of a social media campaign. Several celebrities turned their clothes inside out and backwards to commemorate Rett’s reversibility.
The PSA video is scheduled to be published on AccessHollywood.com which is amazing but it’s up to all of us make sure this campaign makes waves. For a preview of the video, check it out here: rettgive.org/reverserett.
There are 3 things we are asking everyone who wants to cure Rett to do on Wednesday.
- Share the celebrity video on every social channel you use. Include this link rettgive.org/reverserett and #ReverseRett in your post.
- Post a photo or video of yourself, your family and/or your loved one with Rett wearing clothing backwards on every social channel you use. Suggested copy to accompany your photo or video: “I/we want to #ReverseRett so Lily can [insert a goal – talk/do cartwheels/breathe normally/etc.]. Join me? Here’s how: rettgive.org/reverserett.”
- Ask everyone you know who has supported Rett to join in.
I will also email a link to the video to all of you once it’s live.
If you cannot do these things on Wednesday, then do it on Thursday. Better to post late than not at all.
Let’s Make Rett History!
C & L
Eat. Sleep. Cure Rett. Will be sure to wear our shirts backwards on October 25!
The other day I rushed home from work because I was so curious as to WHO she wrote her first independent letter to. And then my heart just melted.
How cool is this kid? She navigated through her pages completely independently and not only did she tell me a silly joke, but she told me she was happy! Goodness I love her so much.
The next day, she wasn’t feeling so well. She had a stomachache (which is unfortunately a frequent occurrence even though I do my best to stay on top of her digestive issues) and didn’t have a lot of energy at school. But still. This kid wanted to write another letter. And this one was addressed to…