This kiddo was super excited to start her summer program today. Did you know that kids with Rett Syndrome, or mostly any disability for that matter, need year-round therapies so they don’t regress? So it will be a busy summer of physical therapy, occupational therapy, speech therapy, reading, spelling, math and her favorite: hydrotherapy.
And it will most definitely be a summer filled with blueberries and giggles, and lots of wonderful memories.
First day of second grade v last day of second grade
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.
Last Friday was a pretty big day for us girls. You already caught a glimpse of Wonder Woman and heard that she was having a tough morning. But so many other things happened on Friday. Even though this kid was feeling like crap in the a.m., she still made it to a dentist appointment. She was brave, but man she hates going to the dentist. Who doesn’t?
Then it was to school for super hero day, then PT and afterwards, I took her for a haircut.
She’s been wanting, and needing one for some time. And a few weeks back we had an appointment, but that was the day Lily fell at school and had to get 4 staples to hold her scalp together. Oh, that was a fun day indeed. However, I digress…
As many of you may know her hair is quite a topic of interest. We have had many conversations and even more debates about what she wants to do with it. For a while we were creating a weekly hair menu where she would plot out every hairstyle for each day of the week (see below).
But the debates about her haircut were always the most interesting. She would tell me, incessantly, that she wants bangs and short hair. To which I would reply, ‘short hair in the summer isn’t a great idea’ and wax on as to why. Her response was always quite diplomatic, ‘I can see your point’ she would navigate to on her Tobii (completely independently I must add); not that she agreed with me, but that she understood my reasons why.
In the end, she won. Mainly because the person cutting her hair cut it much shorter than was discussed. But Lily has been so pleased with the result. She told her teacher yesterday that her hair is ‘better and different’. Why yes it is, smart, sweet, stylish child of mine.
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.
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.
Here are a few photos from her birthday… which included a ballet class with the NY City ballet (serendipitously scheduled on her birthday), a party at school, a play date and then dinner at her favorite restaurant Playa Betty’s.
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. 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.
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.